Hope for Maggie Agnew

4/11/2011

2011-04-11T08:34:00.000-07:00

A week and a half left until we leave for Atlanta. I'm getting anxious. I really don't want to have to put another of my kids through this. It makes me sick to think about it.

Taveon has been having a little more trouble with liquids lately and we are hoping its temporary. He has been choking a lot more and we can clearly tell things are going down the wrong tube. Hopefully this will get better soon. Still no luck in the bowel department either along with the rashes. His skin is only getting worse. We still need to get that appt with the allergist scheduled.

Its been 6 weeks now since Maggie's passing and I just don't even know what to say about it. Still so many raging emotions with everything. I know there are a lot of stages you go through with grief but it seems like I go in and out of stages so quickly and just keep going in circles. I can't really explain it except that its a completely scary rollercoaster feeling. We do try to just focus on all of the fun things we got to do with Maggie and everything she enjoyed. I know in Maggie's short life she struggled more than she had good times, but we hang on to those times and try so hard to remember them all. I seem to have a harder time with this because I just get in a bad mood, probably because I can't enjoy these moments with her still. So I feel bad because the kids really want to talk about all of the things that they had fun doing with her. I'm working on this though because I really want them to feel comfortable talking about her and their feelings. This all just really sucks and I'm tired of it. Sadly it is what it is and we have got to find more ways to keep busy and stay positive. I hope with the weather getting better we can find more things to keep us busy.

We appreciate the prayers so much and I know Taveon will need them during our time in Atlanta.

Missing you so much Mags!! Love you more than ever! xxooxxo

4/1/11

2011-04-01T10:35:00.000-07:00

Well we have the date for taking Taveon to Atlanta for his biopsy. It will be almost exactly one year that we took Maggie to get her biopsy in Atlanta. So it’s definitely really hard for us to be going back there. I guess we know we will probably get results in July now also. This has all been really frustrating for Sean and me because not only is it so scary that Taveon could have a milder form of mito but we had planned to take Hailey and Taveon on a trip to San Diego during this exact time we will now be going to Atlanta. These two needed to get away so badly and now we will need to wait. Sean and I have been trying to come up with another plan and time on getting away to do something fun with the kids. Hopefully we can put something together by at least June.

So a couple of things to update on with Taveon, he is still having major bowel issues. Still can’t go no matter what. Also this past week he has been breaking out in rashes all over his body. It looks like it is something he is eating or drinking that is causing this but we can’t seem to figure out what exactly it is. I just think it’s weird that he has just started doing this in the past week. Although all of my kids have always had some pretty bad skin problems. So our ped wants us to take him back to an allergist and redo the skin test that he had done back when he had just turned two. That test didn’t show he was allergic to anything back then but they said that because he was so young that it may have been inaccurate. So back to the allergist we go.

Hailey has been doing well. She is a reading machine and continues to do very very well in school. She has been struggling a lot with Maggie being gone and the need to take Taveon to get a muscle biopsy. She is a very smart little girl and she has put everything together. She will also be getting a little bit of testing done while in Atlanta as well. Not a biopsy thank goodness, just some other things.

As for how we are all coping, things aren’t getting any easier at all. In fact they are getting much much harder with each passing day. I feel like I really don’t know how much longer I am going to be able to keep going on without her. I spend most of my nights crying all night. I still cannot look at pictures of her and I have not been able to step one foot in her room, just the thought of it brings me to my knees hurting and missing her so badly. I honestly don’t know how I am going to keep going. I know I have two other children and I love them more than anything but the pain I have from losing my baby girl is taking over my life. If it weren’t for the women I go walking with every morning I don’t think I would ever get out of bed. But I asked them if they would go walking/jogging with me and so it forces me to get up every morning and meet up with them even if I don’t want to because I have made plans with them and I don’t want to let them down. I am very grateful for them. Overall I think I’ve been keeping pretty busy and I don’t think a lot of people really know how extremely hard it is to do anything unless I have told them. Sean and the kids have been struggling a lot as well and each day we make it through we are so grateful for.

I had a dream a couple of weeks ago of Maggie and it was a great dream. I have mixed emotions about it though because I really want so much for it to be reality. I couldn’t believe how real it was. I had only told a few people about this dream and they all said that it was Maggie coming to me to tell me that she is okay now. Why couldn’t she have been okay here with me? Unfortunately my attitude kind of stinks lately and I’ve been getting jealous of other people. I try not too but it just doesn’t seem fair to me. I’m sure it never will. I see other people with their kids with medical problems and I just so badly wish that Maggie was still here so I could be doing all of these things for her. I would most definitely give anything to be able to do all of the medical stuff again if it meant she could be here. I would much prefer her healthy and without medical problems so I could watch her run around with her brother and sister but I would definitely take the medical stuff if I could just see her and hold her again. I watched Rapunzel and all I could think of, is where is the magic hair or tears that will heal my baby? I wish so badly that there was something like that to heal my baby and bring her back. Well……….day by day, hour by hour, minute by minute, is how we are going to get through this, I guess.

Thank you so much for continuing to keep our family in your thoughts and prayers! Please pray that Taveons muscle biopsy, spinal tap and other testing will go smoothly. Please also keep the families of other mito children that have passed away in your prayers. There have been quite a few in the past few weeks that have gone to heaven and I’m sure all of the families could use some prayers. Along with the families watching their children fighting for their lives right now.

We miss you so much Mags! Sending lots of love, hugs and kisses up to you!!

3/25/2011

2011-03-26T23:58:00.000-07:00

Well a lot of decisions have been made in the past week. We are right now in the works for hopefully getting to Atlanta in the next month. Our doctors here have been talking with the doctors in Atlanta and they all agree that Taveon needs to have a muscle biopsy and a bunch of other testing done. So we are trying to get all the paperwork and arrangements ready to go out there. Apparently Atlanta is ready for us when we are ready, and as soon as the paperwork is filled out, which should be done this weekend and faxed over on Monday. There are a lot of emotions that come with this decision to get the biopsy. Although we know at this point that Taveons health is nowhere near where Maggie was, it is still very scary and concerning because if he does have a Mitochondrial disease then it is still a progressive disease. Everyone who has followed blogs with children with mito or has read up on mito knows that there are a lot of things that can happen that can speed up the progression at any time. Just the thought of him possibly having this makes me sick to my stomach. We will try to remain calm and get this done for Taveon. One thing that could be a possibility if he does have this, would be the mito cocktail. The mito cocktail is given to possibly slow down the progression of this disease, however, it is not guaranteed. This was something that Maggie was too severe to do and because of all of her complications with all of her organs Atlanta suggested that we not do the mito cocktail with her. We are just going to be praying everyday that Taveon does not have this awful disease.

I have talked with a few other doctors this week as well and we have started to set up a plan to try and get some things figured out with him. So we started with the bowel cleanout program. I was really nervous to do this because Taveon requires a lot of fluids to just function regularly. I was worried that because we were doing this at home, he might lose too much fluid from all the laxatives and other things to help him go. Well I guess I didn’t need to be worried about that at all. We did exactly what they said and he didn’t even go at all. He finally had a bowel movement after 4 days and it was his regular really big one. During this whole cleanout thing Taveons tummy got super distended and he cried for days from being in so much pain. He also wanted to eat a lot and was really obsessive about it. It reminded me so much of Maggie. She must have been in so much pain all the time because she was constantly signing to eat every five seconds. This is what Taveon was doing. I would feed him and right when he was done he was crying so hard saying his tummy needed more food. I discussed all of this with his GI doctor and he thought that it was very strange that he wanted to eat with the pain. He also thought that part of why this all didn’t work was because he has such slow motility. We already knew he has slow motility we just didn’t know to what extent. Anyway so we decided to stop everything to try and let his tummy go back down. We discussed what our next steps were going to be and the doctor thought that we needed to get his reflux under control to see if this is what is causing his suffocating episodes at night. We are going to give some reflux meds another try even though they didn’t work when he was on them for a year before. If they don’t work then the doctor wants us to do the nissen so he won’t be able to reflux anymore. However he said that if we do the nissen then he wants him to have a g-tube placed as well so that we can vent him. What the heck!?? Now I feel like we are totally going backwards. I guess we will just have to wait and see but I don’t have high hopes for these meds since he has already been on them for a year before with no success. After he has been on these meds for six weeks they are going to do a FEES study to look at his vocal chords and see how he swallows. It is important that we get the reflux problems under control soon so that he doesn’t get more damage done to his ears and sinuses. We are also doing glucose tests at night to see what his sugars are dropping to. I will update when we know more on all of this stuff and when we get the date for Atlanta.

Tomorrow with be four weeks since Maggie passed away. Each week has gotten so much harder for me and I think for Sean too. I haven’t slept in days because all I think about is how much I miss her. It is so hard for me because it is easier for me not to think in detail about all of this yet but then I want to remember everything about her. I am so afraid that I am going to forget things about her and that maybe I already have. Man, I miss that little girl so much! I want her with me so badly but I know that she was probably in more pain than I could ever imagine so she was suffering and I hate to think that. After seeing how Taveon responded when his tummy hurt I know that she was probably in so much pain all the time. She was such a strong little girl because nobody could ever tell she was in pain except for the fact that every now and then she would grab her belly and wince and ask to be vented. I’m curious to see how Taveon does after the muscle biopsy because when Maggie had hers done TWICE she was up and walk or moving around like it wasn’t a big deal but I am sure that it had to be painful. She had such a high pain tolerance. I pray that she is happy and pain free now. She is missed so very much!! We love you so much Maggie!!

Please pray that we can figure things out for Taveon. We are so worried about the possibility of him having this same disease. Thank you for all of the prayers for our family during this really hard time of losing our precious baby girl we appreciate everyone thinking of our family.

3/16/2011

2011-03-16T19:41:00.000-07:00

Sorry I haven’t been blogging much lately. I just haven’t had anything different to say. I still have all the same feelings as I did on the last post. Just feeling like I am living in a different world and that none of this can possibly be real. The only way I am able to think that this can’t be real is because we have kept ourselves so busy these past couple of weeks. I’m talking crazy busy, just because I’m afraid of having time to myself to think about things. We get up every morning and get out the door and go do something, anything that will just keep us busy. Trust me, it would be a lot easier to sit and do nothing everyday but we force ourselves for our other kids. Every so often I do get that few minutes to think about some things or I see something that reminds me of my sweet Maggie and the pain that comes with that is none I have ever felt before. It is so incredibly physically painful I just can’t deal with it. I’ve heard from a lot of people that in time things will get easier or more bearable maybe. Things are only getting worse for me as time goes on. Sean and I went to a therapist (we had this appt set up before Maggie passed because we knew things were getting harder with Maggie and we wanted to make sure we had the absolute best relationship we could between the two of us so that we could be there for one another) and it seems that maybe part of the reason that things are getting harder for me, is because I try so hard not to think about it and show emotion about it. Like I said in my previous post I am terrified of my own emotions. I’m so certain that once I start I’m just never going to stop crying or losing control. Not to mention all the pain I feel just thinking about never seeing my sweet baby again. (I know there is always when I die I can see her again but its not the same and its not what I mean). I want so badly to just hold her my body gets so exhausted just thinking about it. I know some think it is good to let it out and that there isn’t a problem if I just get out of control for a little bit. That freaks me out, I’m not a crier so its scary, the few times I have done that in my life have been scary and I don’t like to be out of control like that. I don’t think I would be able to function anymore if I let myself think about her or look at pictures of her. Not to say that I never think about her because that would be impossible, almost everything reminds me of her but I don’t go on and on thinking about every detail. And I obviously do see pictures of her because they are all over our house and I’m not going to take them down because she is a part of our family. I just try not to go through other pictures we have at the moment. I’m so grateful we have them but it’s just too hard for me right now. We have been going quite often to her grave (I hate that she has a grave, I hate to say that) but its harder for me to go than it is for Sean right now. We just grieve differently, and that is fine. However I want her to know I’m here and love her and miss her so much so we go and bring things to set next to her marker. We haven’t picked out a headstone yet but we have been thinking of what we want it to look like. Unfortunately they have some restrictions on what we can do at the “memorial park” that she is buried at. I think it will be fine though and I really think she needs to have a headstone in her memory soon. So even though it is really hard to think about we will do this as soon as we can pick out exactly what we want for her.

In other news Taveon had an appt today. It was a hard appt. He saw one of Maggie’s doctors for the first time. He has all of the other same specialists as Maggie but we just kind of held off on his medical stuff for a bit so we never had him see this other doctor. We really like her a lot and we aren’t even sure she really sees kids like Taveon but she is so nice she agreed to take him on as a patient. She will be communicating with all of the other specialists that he has so maybe we can all get on the same page with his health needs. Obviously Taveon is not as severe as Maggie but with him possibly having Mito also, you never know what can happen. We already know there are some things that we need to take care of right now so we will wait for this doctor to discuss with the others and figure out a plan. Part of me is freaking out and wants to fix everything and be overly cautious but the other part of me knows that we just need to get a plan and let him do his normal stuff. But basically every decision we make I am completely torn on what to do. Because again part of me would love to ignore the problems he has with his reflux and stomach, and do nothing about it because of fear of uncovering more problems. Then the other part of me wants to treat and fix these problems so he can feel better and not cry every time he goes to the bathroom and not wake up every night coughing and suffocating from what we believe is the reflux. But we aren’t sure it’s the reflux, it could be his asthma or it could be something else like his airway collapsing so then we fix what we think is the problem only to find out that really that wasn’t the problem. That is why I am all over the place when it comes to making decisions for him. I can’t help but feel this way because these are all the thoughts that I still have about making decisions for Maggie. I always wonder if we just didn’t do anything would she have been okay? But then I know especially with her airway problems she wouldn’t have been here as long as she was if we didn’t do something about it. Then I think to myself maybe if we would have been more aggressive with other things would she still be here? But then I think about what her quality of life would have been like. Then again I think about how her quality of life was anyway and wonder and hope we made the right decisions. It is so hard to figure out and make life decisions for these little kids that can’t tell you or make their own decisions. I pray everyday that Sean and I not be selfish and make decisions that would be best for me or him, or easier for us, but that we have the knowledge, strength and wisdom to make decisions on what is best for our children. I have no regrets on the decisions we made with Maggie’s health I just have thoughts of “maybe if we would’ve done it this way or that way” Looking back on things Sean and I have talked about this a lot and when reviewing everything that she went through we can’t find anything we would’ve changed but after losing a child I think we will always think about it and always try to find something that maybe we could’ve done differently. I can’t really explain how we can feel both that we did everything and also feel that we didn’t do everything at the same time, it doesn’t make sense to us either and it drives us nuts constantly thinking about it all. We try not to over think things but easier said than done. We will keep everyone posted on how Taveon and the rest of the family is doing and will update on any adventures we might take. Yes, we are still considering taking Taveon to get officially diagnosed and seen by a mito specialist but we are taking things one thing at a time for now and are going to wait to see what some of the doctors here think for now.

We appreciate all of the thoughtful comments people have left on here along with my facebook. We also appreciate very much everyone that sent us cards, made dinner, sent memory gifts, called, got me out of the house and prayed for our family. We are overwhelmed by the outpouring of love shown to our family and feel so grateful for being surrounded by so many amazing people.

We miss you so much Maggie and love you more than you know!!

3/10/2011

2011-03-10T08:28:00.000-08:00

Why did Maggie have to suffer? Why did she have to have this disease and die? I just don’t understand any of this and I don’t even know where to begin to start to help myself be okay and go on with my life. I’ve been trying not to look at pictures of her and I’ve been avoiding things that remind me of her because I don’t know how to deal with my emotions. I have a support group meeting coming up soon and another therapy appt coming up. I’m just waiting for these so that then maybe someone will be able to help me work through this. I’ve always been afraid of my own emotions. Once I let a little out it seems to get completely out of control and I can’t get a grip. This is all so scary when I start really thinking and believing that I’m going to go on with my life without her. I know its been almost two weeks already but I still can’t believe any of this. Is this normal? How do I do this? I’m sure I am probably doing things all wrong and making things harder on myself and maybe my family but I really have no idea what to do. I’m so scared. Is it normal to feel like I am living in a different world than everybody else?

I would give anything to be able to snuggle Maggie again. I would go to a doctor appt everyday or more than one a day like we used to, I would give anything to do all of her cares, I would stay up with her every night. But I know that this is all for me and to have her here would have only prolonged her suffering. I know that her body was done and ready to be out of pain. Even though I “know” these things it doesn’t stop me from wanting to be selfish and have her back. Even though I “know” I can’t have her back right now, I still don’t understand it and I can’t believe it.

I feel so trapped in an unknown world…….

3/7/2011

2011-03-07T20:06:00.000-08:00

I’m not even sure what to say. I guess I will update a little more on what happened with Maggie the days before she passed.

We brought Maggie into the hospital because her poor tummy just wasn’t working and she was in so much pain from all that was going on with the bacteria. The past couple of months we just couldn’t seem to get Maggie to improve and she was on a downward spiral. We couldn’t stand seeing her in so much pain. Since we had tried so many medications to try and comfort her at home and she had opposite reactions to all of the meds we decided in order to get the best comfort care we should have her admitted. When we decided to have her admitted we talked to her doctors a lot before doing so. Her GI doctor just said that there was nothing else to do for her and that he thought that this was the best way to handle her situation. Her other doctor also agreed that this was what would be best for Maggie. When we made the decision we knew that it was a possibility that Maggie may not make it out of the hospital but hoped, prayed and planned that she would come home comfortable. Her GI doctor even offered to help us at home once she was able to be home.

We decided as a team to start with morphine to try to comfort Maggie. We started with low doses. After the second day of this we were told that Maggie was not absorbing any of this through her stomach or intestines and it was suggested to do it through an IV. We agreed because we just couldn’t stand to see our sweet baby so uncomfortable. Once starting her on the morphine through the IV Maggie just continued to get worse and worse. Nobody had seen anyone get this bad and do what she was doing with morphine. She received her regular doses and then the suggestion was made to add another med for anxiety. We added that med and again Maggie was not responding well to it. She was not herself at all and things were getting bad quickly. We tried to do what we could to get her comfortable and I know she tried really hard to be so loving and good. We did manage to get some kisses and hugs and loves the day she passed even though it was very obvious she was not well at all. My family was with us because we could tell she was not going to be able to go on much longer. We decided we wanted to snuggle her and spend some time with her alone so we had everyone leave. Once everyone left I cuddled her up and layed with her in the bed and started to sing to her. I sang two songs to her and she gasped and we knew then her spirit had left her body. We called the doctors in while I sobbed and kissed her holding her tight. They listened to her and said that her heart was still beating. She was also taking very few breathes per minute. Sean and I knew though that she was gone and it was just her body not wanting to give up like it always does. Her heart rate got really high and the doctors said that this could be because she was in so much pain. So they gave her some other meds. These meds did not go well with her body. She was so complicated. So again the decision was made to go back to the morphine. Shortly after all of this Maggie’s heart stopped and she was gone. Even though her heart was beating we could feel her leave her body when I was singing to her. I cannot describe this at all but this is just how both Sean and I feel. It was so very heartbreaking and we never thought that she would go while we were in the hospital. Maggie’s body was so much sicker than anyone thought it was, based off of her labs. All of those labs were inaccurate and Maggie was just trying to make it through all of this while her body did its own thing. Everything happened the way that it should’ve happened. Starting morphine before we did would not have been the right decision because we would’ve done that at home and since her body did not respond how anyone expected, it would’ve been too hard for the doctors to know what to do without being with her. Maggie fought so hard with a body that didn’t work. She is the most amazing little girl. Now she is a beautiful angel. We love and miss her more than anyone will ever know.

Maggie’s services were on Thursday and Friday and were just beautiful. I want to thank everyone that helped with this and everyone for coming and loving Maggie and our family so much.

Honestly, even though I am so grateful that Maggie does not have to live in pain anymore and her suffering is over, it hurts so much not to have her with me. My life was this child. I know I have two other children but they are such good little kids and they let me do what I needed to for Maggie. Every second of the day I was holding Maggie for the past few months and really most of her two and half years here. There was rarely ever a time I wasn’t with her or working with all of her doctors trying to make the right decisions for Maggie. I’m not quite sure what to do now. I am trying to be able to spend some time with my other really great kids that need me but they are very low maintenance. I won’t lie, I am struggling so much and miss my baby so much it hurts. I’ve never felt this pain ever before and it is so hard.

I’ve since talked with one of Maggie’s and Taveon’s doctors and we are getting a plan together in case Taveon starts to struggle more. On his last blood tests his lactate levels were so very high and he even had lactate in his urine. Our plan is to eventually get him back to Atlanta where they really want him to have a muscle biopsy because they really do think he has what Maggie has and are afraid of how his body may respond with each illness and most importantly how it will respond when he reaches puberty. So this is now our goal is to have a plan so we aren’t starting from scratch once something hits him and he gets a virus or the flu and starts to go downhill. Its so scary knowing that Taveon most likely has this same disease. Even though he seems healthier than Maggie, mito is a scary thing that can just take over and do things when you least expect it. We will do what we can though and won’t give up on trying to raise awareness to help find a cure.

Thank you for all the thoughts and prayers for our family. Please continue to keep our children in your prayers as they struggle to understand not being able to see their sweet baby sister again. Also for Taveon’s health and that we can keep him from progressing. I’m hoping this update makes some sense. I really just am hurting so much which is making it hard to update and think straight.

We miss you Maggie and love you more than you will ever know!!!!!!!

Maggie's Obituary

2011-03-01T20:13:00.000-08:00

Our Sweet Angel, Maggie Alyce Agnew, passed away peacefully on February 26, 2011 in her Mother and Father’s arms, surrounded by loved ones. She was born on June 18, 2008 in Salt Lake City, UT to Sean and Michelle Agnew. Although her life was short, her presence will leave a lasting impact on all those who knew her. She was an inspiration to so many people around her and will never be forgotten. Maggie was a spunky little girl who always knew what she wanted! While her body may have appeared weak her spirit was strong and full of life. She loved to cuddle with her Mom, watch football with her Dad and tease her brother and sister, as well as everyone around her! She loved her green binkies and red suckers. In fact there was rarely a time you would see her without one! She loved Princess Aurora and everything Pink! Maggie loved to be outside and loved to swing at Grandma’s house. She enjoyed going on walks with her family and visiting the ducks. Maggie was blessed with a wonderful family, amazing neighbors and friends and great nurses and doctors. We are so thankful for the time we had to spend with our sweet angel girl and will miss her so much!
We love you Mags, always and forever.

Maggie is survived by loving parents, Sean and Michelle; sister Hailey (6); brother Taveon (4); And many grandparents, aunts, uncles and cousins.

Funeral Services will be held on Friday March 4, 2011 at 11:00 a.m. at the LDS Chapel 1111 E. Charleton Ave., Salt Lake City, UT. A viewing for friends and family will be held on Thursday from 6-8 p.m. at the church, and again one hour prior to funeral services. Interment to follow at Holladay Memorial Park. In lieu of flowers please donate to the Mitochondrial Foundation at www.umdf.org in Maggie’s name. On-line condolences at www.memorialutah.com.

Our Angel

2011-02-27T07:02:00.000-08:00

This is Mindy again. Maggie was one tough little girl she loved her family so much she was not ready to leave and really didn't want to, her personality showed till the very end. They started her on morphine for the past three days and Maggie was not responding well to it. They continued to up her dose, she finally fell asleep in her Mommy's arms. They continued the morphine to comfort her as she was sleeping, her heart rate had sped up which was a sign of pain. The nurse continued to administer the morphine, Maggie was incredibly peaceful spending time with her Mom and dad. She left us at 8:40 this evening. We thank you once again for all of the love and support our family has received. Maggie is at peace and our family will try to being healing as best as we can.

2/26/2011

2011-02-26T10:17:00.000-08:00

The newest info available.....So as many of you know we have not made very much progress since being admitted into the hospital. After speaking with Maggie's hospital doctor and in coordination with the doctors in charge of her care, Sean, the doctors and I have agreed that we need to be more aggressive with the medications in order to see if we can get Maggie comfortable. She is just miserable and agitated all of the time and is not sleeping (therefore neither are we). We are going to be increasing the dosage and the frequency of the morphine and adding haldol to the mix to help with Maggies behavioral discomforts such as brushing her teeth 30 times an hour, rotating out the same suckers repeatedly and hitting her head in frustration. We know the results this medication is supposed to have and we really just need to get Maggie in a more comfortable state as we cannot sit and watch her suffer this way any longer. The increased dose started this morning and will continue so we will update as things progress (or don't) and we hope to see a happier, more relaxed Maggie. Thank you all for your love, support and prayers, we cannot thank you enough!

2/24/2011

2011-02-25T16:36:00.000-08:00

I'm Michelle's sister, Mindy, she asked me to update her blog for her since the family is so overwhelmed with everything. I'm going to do the best I can to update with what is going on. It won't be as thorough of an update as Michelle because I don't know all the medical terms.

Last night, Maggie had her "Star Raising" a Make-A-Wish Foundation. It was awesome and so many people that love and care for Maggie and her family were there supporting them. We all appreciate all the support their neighbors have been giving them. Michelle and Sean seriously have the best neighbors anyone could ever hope for especially in times like these. They are always the first to jump up and help. Thank you so much!! I know how much it means to Michelle, Sean and their family.

A little synopsis of what's happening, is that Maggie has poisonous gases in her body caused by bacteria. This is what she is living off of and she's in a lot of pain because of it. She is not able to eat anything as it would feed to her bacteria and increase the gases in her body. Sean and Michelle are doing their best trying to get out all the gas, but it's still not enough, her tummy just gets gets bigger from the gases building up. The only way to help with this is the medication that I believe Michelle has talked about previously, this medication will help with relieving the gases. She has started on this already and it hasn't really affected her like it should, her organs just can't handle it so basically her organs aren't exactly functioning. With this in mind, Michelle and Sean thought it best that they bring her to the hospital. Today, they will bringing Maggie up to the hospital where they will actually stop the medication since her body just can't handle it, then they will make her comfortable by putting her on morphine. This is an extremely hard time for their family. Things are really not looking good for sweet little Mags. She has touched so many lives of those that she has and hasn't met, I just hope that she can be an inspiration to us all, she's been an amazing strong little girl. She is and always will be our little Angel.

2/21/11

2011-02-22T08:59:00.000-08:00

Just a quick update. Things aren’t working out as well as we had hoped. Maggie is continuing to use the pedialyte to make more bacteria. We spoke with the doctor and he has told us that Maggie is so critical right now. To even have a chance at getting her a little more comfortable we will need to stop all food and pedialyte. So she can only have water for the next 24 to 48 hours. Then we will go from there to see what might need to happen next. Maggie has started to get swollen feet and legs and intermittently has it in her face. He let us know that this was not good at all. He is very concerned but says that they have done what they can for Maggie along with the other hospitals that we have been to. Nobody has been able to come up with anything else to help her this is just what the disease does. He said that it wouldn’t be humane to put her in the hospital at this point unless it was just because we just couldn’t care for her end of life because there is nothing that they could change or would do differently. He thinks she absolutely should be home right now spending some time with us. He said that at any point she will tip and everything will go off balance and he thinks that this could already be happening because she is getting so swollen. All of her doctors have been discussing what else if anything could be done and agree that she is just too severe and that there is just no way her stomach is going to ever start to work again when looking at how severe everything is on the x-ray. We can only hope for a miracle right now and that is what we are doing.

We are waiting to have a meeting with another of her doctors to see about setting up hospice and to just go over everything and make sure we are absolutely doing what is best for Maggie.

To answer some other questions about Taveons swallow study and how the doctor thinks he may have mito from that study. The reason why he suggested that is because Taveon has low tone and its showing in his swallow study even. He does not swallow like a normal person and also when things are going down the wrong tube he does not react. He can’t even feel that this is happening and is very weak at getting it out if he does at all. So with this info plus all of his other history and Maggies diagnosis this is why he says that it looks like mito.

We have also received some results from Atlanta today from the blood work that the other two had done. Taveons tests came back looking very similar to Maggies. This is just the blood work and urine, he did not have a muscle biopsy. His lactate levels were extremely high which is not good. He also had a few other things that were not great. They are suggesting that he have a muscle biopsy because he has so many symptoms and so many other tests that aren’t good.

Hailey's tests were not as severe but they did recommend having another test (which I can’t remember which one it was ) done to see what it shows. She did have a few things going on but they are not as sure with her like they seem very certain with Taveon.

All of these things are very devastating to hear. With getting these results and dealing with what poor little Maggie is going through we are really struggling. We are hoping to have Hailey and Taveon meet with child life at the hospital to discuss all of these things going on. Sadly we have been putting this off when we should have done this before now. Its just so hard to accept that we really need to be doing this right now.

Maggie is such a strong little girl and has touched so many people in her short life. We hope and pray that she can be comfortable in the time she has remaining. She is loved so much!! We appreciate all of the really nice supportive comments. It is helpful to read about all the people who are praying and thinking of Maggie and to see how many people who care about our little girl. Thank you so much!! Please continue to keep her in your prayers, that she may be comfortable.

Thank you also for all of the dinners people have been bringing over and the gifts for our kids. We really appreciate everything so very much!!

2/18/2011

2011-02-18T21:58:00.000-08:00

I was hoping things were going to get better not worse. However that is not the case. So much has happened this week.

Maggie continues to be in so much pain even with the new med that was added for the bacterial overgrowth. We decided to wait just a couple of days to see how things go.

On Wed Taveon went in for a swallow study. It ended up not being great news. He penetrates when swallowing thin liquids and also some nectar. They want him to have thickened liquids for now. They said that because it was just a short time frame that they could see him drinking they think that he is probably aspirating after not much longer of what they saw. We then needed to meet with ENT. We ended up waiting for about an hour. Then to make things worse his fellow came in and treated me like an idiot, while she was chewing gum and asking me what the doctor thinks about his tonsils and adnoids. Now if she had actually taken time to read his chart she would have been able to see that they took those out a long time ago. So then I was rude and even spoke rudely or more like the way she was talking to me and then I just couldn’t talk to her anymore. After the swallow study was done I ended up having some major anxiety because I was not expecting anything to be wrong in that area. So I was already a little upset going into ENT and then having to wait so long and then having a rude fellow that knew nothing about my son just didn’t help this situation. She left and I waited maybe 10 more mins and still no doctor. I got Taveon and my stuff and walked out, found a nurse and told her that apparently we aren’t important enough and that we were going to leave. And that I didn’t appreciate having someone that didn’t know a thing about my son come in and treat me like an idiot. Then I walked out into the hall and started crying. I called Sean and didn’t know what to do because we needed to see this doctor but I was too upset. Taveon had double ear infections that were really bad and he needed them cleaned out. So the nurse came back out and saw me and told me the doctor would be right in if I wanted to go back in. So I did. He came in and asked me what was wrong. I told him about his annoying, rude fellow and how I am really freaked out that Taveon just failed his swallow study. I was crying through all this. I never do that but I had just had it. I told him that I would much rather be spending time with my sick daughter than sitting in his office all day. He apologized and started discussing what we would do for Taveon. I was not wanting to discuss trying other things like other surgeries or things like that. He could tell I was really overwhelmed and he just suggested going about things one thing at a time for now. So we decided to start by getting his ears better. He cleaned them out and put antibiotics in. He put him on ear drops for a month to see if that will help. Then he told me how to track him down if I needed anything else. That was it for that appt.

Now on Thursday Maggie was still in a lot of pain and just not doing well. I called the nurse and asked her to check with the GI doctor to see if we could get an x-ray to check placement of Maggies gj-tube. She called back and said it was all set up. So I brought her in and had the x-ray done. It was not a fun thing for her. I expected it was still in place but I just wanted to double check. After the x-ray they said the doctor would call me. I waited and didn’t get a call so I assumed there was nothing urgent. Early in the morning on Fri I got a call from the doctor who sounded very sick. He said that he was very sorry and that he wanted us to go into his office last night to talk to him but he was just too sick. He said that he was just going to have to talk to me over the phone because he didn’t want to get Maggie sick. Then he tells me that he received the x-ray from yesterday. He said that he couldn’t believe Maggie was still alive. He said that what it showed was that she has gas from bacterial overgrowth, and that it was the most severe case he has ever seen. It starts in her esophagus and goes to her rectum and it is completely full. This is all poison. He kept saying that he was really sorry but we couldn’t feed her anymore. The only way to get rid of this is to stop feeds and put her on pedialyte and some much much stronger meds. He said she can’t have any sugar. And that some how her body is living off the fumes from the bacterial overgrowth. He has no idea how she has been able to do this and can’t understand how her body is making her labs normal. He just kept saying he was sorry and that he has never seen anything like this. He said he has lost sleep over Maggie and is just really concerned. He told me to prepare for the worst. That once the bacterial overgrowth is gone her body won’t have anything to live off of. And also not being able to give her any sugar is just not good at all, especially when dealing with someone who has a metabolic disorder. Her glucose always sits at around 50 or lower so no good can come from having no sugar. He said we can’t even do TPN because she would get an infection right off the bat from the bacteria she has. He asked me what we had talked with palliative care about for end of life. I explained to him everything and he said he was going to call her other doctor. He wants Maggie to be as comfortable as possible. He is not expecting her to live through all of this. It was one of the hardest conversations I have ever had to have. He told me that we needed to keep in close contact with him and that we shouldn’t try to call his office just to call his cell phone whenever we wanted. He said he knows we don’t like to bother him like that but he really wants us to. To make things worse, if that’s possible, he continued to tell me that he was able to review Taveons swallow study (he is his doctor too) he said that based off of all of Taveons history and this swallow study he thinks that Taveon really does have mito. This was my fear when I saw the swallow study. I know that Atlanta already told us this but now more things are arising and its freaking me out. He wants to do a lot more testing on Taveon so we can figure him out now and try to keep him healthy. He talked to Atlanta and they both together believe that Maggie has this Fatty acid oxidation disorder which means our other kids need to for sure be tested.

He then called in 3 new meds to add. Then he called her other doctor. Her other doctor called me after that. We talked for a little while. We talked about both kids and my fears and what we wanted for Maggie. Our most important thing right now is we want to get Maggie comfortable so she is not suffering. This was one of the hardest days of my life. We are still hoping and praying for a miracle.

We appreciate everyone praying for Maggie and all of the love and concern shown to our family. Please continue to pray for Maggie. This next week or two is going to be so hard and we have no idea what is going to happen since she can’t eat. We will only be able to give her little pieces of meats or cheese. We have to be very careful because food sitting in her stomach is what caused this problem to begin with. She has severe pseudo obstruction that is causing food not to be able to go through her intestines. This is so scary and we just have no idea what will happen. I just feel so bad for her and just wish I could’ve figured this out sooner for her.

I’m so sorry if this is all over the place. That is just how I am feeling right now. All over the place.

Please also continue to keep these other mito kids fighting for their life in your prayers.

Eithene www.fromthebanksofjordan.com
Cooper http://cotaforcooperk.com/blog

2/10/2011

2011-02-10T16:14:00.000-08:00

Maggie had the GJ-tube placed. They did it under GA and she seemed to do okay. They did say that if she has problems with this tube or ever needs it replaced she will always need to be put under GA. So hopefully we don’t have problems with this thing any time soon. They only place these things under GA on Thursdays so if she happens to have problems on any other day it will be a process to get the right people in to get this taken care of. But he made it very clear that she must be put under no matter what. He also said that if this doesn’t work or she has too many problems with this then he suggests that we don’t do a GJ-tube but a tube that is surgically placed on the right side of the abdomen that would go right into her intestines. First we need to see that having the tube back down in the intestines will even do what we are hoping before we go there.

Maggie has been in a lot of pain. When she actually went to recovery after the tube was placed. The nurse was a little frightened. She said that the anesthesiologist just handed Maggie over with her heart rate in the 40’s and really low blood pressure and he didn’t bat an eye. She was so upset she was saying that since he wasn’t concerned she tried not to be but she told me that when they see kids with the numbers Maggie had she would start chest compressions (which by the way is on her DNR so she really couldn’t do that) but she was just very flustered by the whole situation. Luckily one of the nurses that took care of Maggie last week was near her and recognized Maggie and reassured the other nurse that this IS just how Maggie is. I think she was happy when she could pass her off to the next section with a different nurse. All of the nurses when they get Maggie get really nervous with her unless they have had her before. Even before Maggie went back to get the tube, the nurse that was doing her vitals just couldn’t accept that Maggie's heart rate was really in the 50’s and 60’s while awake and moving and even upset. I had to keep telling her that this is right and that she can wait forever but its never going to change. She ended up leaving it on for about 20 mins before accepting that it wasn’t going to go up. Anyway we are just really happy that this is over and are really hoping that everything will work and will do what she needs. If anyone that has kids with tubes would like to share with us what kind of ferral bag or drainage bag they use for the g-tube part that would be really great. We have tried a certain ferral bag before with no luck so I think we are going to need to try a different one but our doctor doesn’t know what to try. The one we have tried has a tube that is like 6 feet long, its really crazy and doesn’t do a thing for Maggie. We need something that can get air out and the food that she will take by mouth. We appreciate any suggestions!

We really are so grateful for all the prayers! We never know how things will go with Maggie being sedated. There are very few things they can use to sedate her and things seem to go much smoother when they just use the stuff that we know works but its still never easy to have to leave her in someone else’s hands. So thank you so much for the prayers and support it means so much to us!!

2/9/2011

2011-02-10T09:06:00.000-08:00

We just received a call from Maggie's GI doc saying that Maggie will be getting the gj-tube placed tomorrow. He wants to get this done so she will have some time to heal. Maggie will need to be put under general anesthesia to get this put in. Radiology called our GI and explained that he will not put this in unless she is under GA, he is not comfortable putting this in when she is not sedated. Her anatomy is a little different and she has not been super healthy so they are worried something might go wrong. We are not super happy that she has to be put under GA but know that it is probably best with her complicated history. When discussing how things will go once we have this in place and are using it, we asked about what happens if she still refluxes (which we are 99% sure that she still does) from her intestines into her stomach. He stated that there would be nothing else he could do for that part of her but at least we will hopefully be able to relieve some of her pain by getting the air out. We are happy that this could help her to be more comfortable but are really worried about this feeding problem. This is why we haven’t put the gj-tube in before, because we know that the feeding part would still probably not work so well but at least we can get her stomach feeling better this way. We still end up with our only option of TPN. We will just pray that at least some of this formula will go through her intestines. Hopefully enough to keep her stable. Fingers crossed.

As you can probably tell we are really concerned that we are going to put Maggie through all of this and end up in the same place we are already in. Please pray for Maggie, that she will be able to do well with this sedation and that once we start to feed her things will go through well. We appreciate all of the nice comments and prayers being said for Maggie. One commenter mentioned a formula that her son is on. We appreciate that and we will be talking to our doctor about that tomorrow to see if he thinks that will work. Thank you!!

2/8/2011

2011-02-09T07:18:00.000-08:00

Where to start? Okay I will start with talking about the cough assist. We finally got this thing. However when it was delivered by our respiratory therapist he was not looking super happy about delivering it. We are all concerned about how this will affect Maggie. He went on to tell us that he is really nervous because Maggie is so tiny and fragile that he isn’t worried so much about the machine filling her lungs up but rather the part where it takes all the air out. So it will basically collapse her lungs to try and get her secretions out, basically making her cough. Which should then help her to not get so many pneumonias. So anyway because Maggie is so weak and she has so many lung problems there is a fear that her lungs may not open back up and we could be in the hospital with a collapsed lung. So after discussing this for a little while we decided to go and rediscuss things with her pulmonologist. There is also a concern because her body has adjusted to being under ventilated and compensated for the acidosis and alkalosis. Yes, she has both problems. It’s very confusing because so many organs don’t work well that its causing both. So anyway it could end up causing more problems if we do get her lungs to open up fully. It isn’t good for them to stay this way either but we need to find out which one will cause more harm or rather which one will be less painful and uncomfortable for Maggie. And that is where we are at with that situation. We seem to always be stuck here.

I also had a pretty in depth discussion with one of her GI doctors. Yes, we have more than one, she is very complicated. We actually haven’t really been to see her GI docs in a while because our last conversations were them wanting her back on TPN and us not ready to put a line in her knowing what would happen. So anyway this doc went back through all of her testing from the time she was born and got all refreshed and up to date with Maggie. Everything except he couldn’t find the testing info from Atlanta. I’m not sure if the doctor that was sent the info from Atlanta just didn’t send it to him since we weren’t on bored with what they wanted to do or what. So we went over it all over the phone. I have all that info in a binder so I gave him all the test results for all the tests. It was a very long conversation.

While discussing all of that, we got to talking about this gj-tube Maggie will be getting very soon. He is working on this right now. The reason it is taking some time is because we started to talk about what formula we were going to run through her tube 24 hours once she got it. We went over all the formulas that we have tried which is a lot of them. The last one we tried being peptamen jr which did not work at all. He then said that from looking at her test results that she has had multiple times since she was a baby. Mostly he was looking at organic acids. Anyway he said he wasn’t surprised that peptamen jr didn’t work. I explained to him that her testing for organic acids was really off from Atlanta as well. He started naming the list of things that were off and it matched what was off in Atlanta. So he said that she most likely has another disorder on top of mitochondrial disease which is fatty acid oxidation disorder. These can be really dangerous disorders. While going over all of the testing from Atlanta they had seen several things that suggested she had a fatty acid oxidation disorder however when they tried to do this test while testing for mitochondrial disease, that test had failed. Not meaning that she was negative for this disorder just meaning, for some reason the test just didn’t work at all. So she was never officially diagnosed with this. We are told that in order for her to be diagnosed she would need to have enzymes taken from her liver to be tested. She is too weak right now to undergo this so we will need to wait. If she does have this disorder like all of her testing here and in Atlanta suggests then we may have a more accurate way to find the gene for her mitochondrial disease and we may also have a more specific name for her mitochondrial disease and the fatty acid oxidation disorder together. Its all very confusing. In the results that we had received from Atlanta they listed some possible names of these that she might have. However we did not understand that these and all of her other abnormal tests went together and we obviously weren’t going to put her through another biopsy and when offered a liver biopsy we all just didn’t think she could handle it. They had suggested that to us in the summer at some point. We were not told that we could have gotten more info and possibly an easier way to find the gene with the info. This is why it is so hard to live someplace that doesn’t have a mito expert nearby.

Anyway our GI is contacting Dr Shoffner in Atlanta to see what formula would be best with this possible problem. Once we get that then we will be able to go ahead with the gj-tube and see what happens. The GI is not really optimistic about her stomach at this point but we will do what we can and see what happens. We just know that with her history of refluxing out of her intestines and into her stomach things will just not work. For those wondering why we are trying this out, its because of the amount of air and food that sits in her stomach. So while we slowly feed her through her j port (the tube that will be sitting in her intestines) we will have a bag attached to her g port (the tube that sits in her stomach) that will constantly be getting all of the air and food that she eats by mouth out of her stomach. If she does have this fatty acid oxidation disorder then we don’t want certain foods to go through. We only want the formula that is best for her to go through because certain foods will cause more problems. Maggie loves to eat so we could never just take that completely away from her. I’m sorry that this is so confusing. Its really confusing for me as well. Some of the other mito families may understand it better but its really hard to try to explain this all writing it out like this. So if anyone has questions feel free to ask, I will do my best to answer. You can Google fatty acid oxidation disorder to get more info on what that is as well. When we have a better idea of which one she has or may have I will let you know. The few that Atlanta had put in Maggie’s results were not good but unfortunately fit her exact symptoms well. The other thing is that if Maggie does officially get diagnosed with this then our other kids will need to be tested as well. It could explain why they eat as much as grown men and are still thin. They both can really put it down its crazy how much they eat and can sometimes be a little embarrassing when we go to other peoples houses. We will see.

As for Maggie she is still in a lot of pain. Its kind of strange because she normally has surgeries and things done and needs minimal pain meds but for some reason she is super uncomfortable and her tummy is still very sensitive. They put the camera down when they changed out the tube and we could see that there was some trauma but I guess maybe there was more than we could see. I just feel so bad for her. She just wants to lay on me and sleep all day. We have also had some scary heart rates while she has been awake with her being down in the 40’s and 50’s while awake and moving. We are use to seeing her in the 40's while sleep but I'm more comfortable if she is at least in the 60's while awake. So that’s no super great.

Thank you for all of the really nice and supportive comments and thank you so much for all of the prayers. We really appreciate all of them!! Thank you also for all of the help we have gotten and the dinners!!

This disease is so frustrating and especially seeing and hearing about so many that are struggling right now. Prayers would be so greatly appreciated for these little fighters.

Eithene http://fromthebanksofjordan.blogspot.com/

2/5/2011

2011-02-08T09:19:00.000-08:00

Just a quick updated on how Maggie has been doing since the G-tube situation.

Maggie has been in a lot of pain. She will not do things that she use to do. We have been trying to give her some pain meds to relieve some of this but they aren't lasting long. Her stomach has stopped again. It is just blowing up huge and things are just not going through. She has also not been getting rid of the fluids that were given to her while in the hospital. Her little feet and legs are still swollen. Her face is looking much better but still continues to go up and down.

As for the RSV side of things, she still seems to be improving there. Last night the nurse did mention that she was breathing so shallow she could not see her breathing or hear air passing through her lungs. So not sure how that will work out. We should finally be getting the cough assist on Monday so that should hopefully be helpful.

Anyway just wanted to give an update. We feel so bad for her she just seems so miserable. Please pray that her stomach will start to work at least a little so she doesn't continue to lose weight.

2/2/2011

2011-02-03T10:31:00.000-08:00

Sorry for the lack of updates!! We have just been super busy around here. Maggie seems to be getting over this RSV okay so far. Her lungs still don’t sound great but she is hanging in there. We also started a new med for anxiety which doesn’t really seem to be helping. Her heart rate was really low all night long which is normal for Maggie but it was even lower than her normal. So we probably won’t stay on this med for long. Especially since her mood has intensified on this med as well.

It has gotten so bad that she earned herself a trip to the ER today. The nurse was doing her morning routine with Maggie, which is venting her tummy and giving meds and Maggie got so mad she kicked her tube and part of it came out. She had a good amount of blood with that too. The nurse was able to get the other part back on but it was clearly not on the way it was suppose to be. Maggie doesn’t have just a regular button that is inflated on the inside of her stomach. She has one that had to be surgically placed and she has to be under general anesthesia to get it out. So we headed to the ER. I wouldn’t normally go to the ER but rather the GI docs but when I called and explained things to them they were not getting what had happened and kept telling us to go to the ER. I was very frustrated and annoyed with them. We showed up to the ER and the attending doctor came in and said “so we just need to switch this out?” I said “well yes but its not that easy, there are tools that we brought and she needs to be sedated to get this out.” She said she would call GI and see what they say. She came back and said that they said the tube should just come out and then we can put a different one in. I then said “okay then, here are the things you need to get this tube out, good luck to you.” I wasn’t being very nice which I should have been more patient since it wasn’t her fault but I was totally annoyed that we had to bring Maggie to the ER when it is a waste of our time and expose her to who knows what. Every kid that was going in there was puking. It was pretty scary. Anyway back to the story. After she looked at the tube she had no idea what she was doing or how she was going to get this tube out. So then the doctor said she was going to call GI back and explain to them what was going on again. So when she came back she said GI would be down to talk with us. After over an hour a fellow came down (don’t even get me started on this guy). He took a look at her tube and tried to act like he knew what he was talking about. Then he says “ why don’t we just hold her down and pull this thing out?” I was like, you’ve got to be kidding me right? Sean and I said no way and he went to get the GI doctor. The GI doctor comes in and it’s the same doc that put this tube in. He immediately recognizes us since he cares for Maggie and Taveon now. And he says ok she is going to need to be sedated to get this out. I just looked at the fellow and he totally was such a jerk and had the worst body language through our entire conversation. Now the problem with taking this tube out is that they have to special order another tube like this one to even replace it. So we will have to use a different one while we wait. Well then we start talking to the GI about all of the air in her stomach and how things are just getting so much worse. He was not happy with all the air she had in her stomach. Its really dangerous for her to have that much air in her stomach because she can get a perforation in her stomach wall which would cause all sorts of problems. So while we sat and talked for a while we decided that once this new regular tube healed her site we are going to try once again to do the gj tube. She has never had a gj tube but she has had a nj tube which things just don’t go well with that. But we are going to give it another try because this is the only thing we can do to try to get the air out of her tummy without taking all food that goes into her belly out. Now we will just have to pray that she won’t reflux stuff out of her intestines and into her stomach so much. We just have to get this air out somehow. I’ve posted on here before how much air she has but I will say it again incase someone missed it. Every few hours we vent her we get at least 540 cc’s of air sometimes more. This is on top of all the food that takes forever to go through and be digested. Its all just not good at all.

Anyway again back to my story. A different doc ended up having to do the surgery because he was the on call and had time available. So we talked to the anesthesiologist about how he was going to sedate her since he has never met her before. He played around with the idea of doing a light sedation until we told him all of the reactions to all the meds she has and how she is not easy to sedate. He was convinced the only way we were going to get this done was with General Anesthesia. He then mentioned an overnight stay and we said no. We have a night nurse and Maggie just seems to do better at home and why expose her to even more stuff when she is still trying to recover from RSV. So then we had to talk about all of the not so fun things like her DNR and all of that. Once we confirmed what her DNR was, he was really good and quick about it and then said that we didn’t need to think about that anymore since she was going to be fine. Then he was a brave guy and took our completely freaking out child and brought her back to the OR. Seriously though Maggie pretty much screamed bloody murder and tantrumed the entire day. It was so stressful. I felt so bad for her.

When things were done, there was a little more trauma to the site so they told us to watch it and now we need to watch for infections as well. She struggled with waking up and it was a little concerning but once she was up she was signing to eat so we gave her some jello and she had only a little retching so we felt like she did well. All of the nurses and techs were huddled around her bed just going on and on about what a cutie she was and how they all just wanted to take her home. She literally had a bunch of people talking to her and standing around her bed until we left. I just kept reminding them that looks are deceiving. Just kidding;-) Anyway she woke up with the same attitude she went in with so as soon as the jello was gone she was upset again. Screaming at all the nice people talking to her. Then we were off to head home. I know it sounds like this was a quick process from start to finish but we really spent the whole day at the hospital and it was exhausting. It wouldn’t have been so bad if she would’ve calmed down at some point but she was pretty much hysterical the entire day.

Maggies weekly weight check this past week was 13 lbs 6 oz. However before we get air out of her she is 14 ½ lbs. Prayers would be great for no more weightloss, a quick recovery with no complications and when we get the gj tube it works.

Thank you so much for all of the people that stepped in to take our other kids and all the offers from everyone to help with them or other things. We appreciate that so much and are just so grateful we have such amazing people surrounding us.

Sorry this update doesn’t have anything from this past week but I can’t even think of what even went on this past week since I’m so exhausted. Thank you for the prayers!!

Oh and I got a question on here about whether the other kids had been tested for mito. The answer is no not officially, no biopsies on them. We are really considering it though since Taveon keeps having so many problems. We will keep you posted on when we come to that point. Thank you for asking!

1/22/2011

2011-01-25T07:22:00.001-08:00

We’re experiencing a bump in the road. I got a call today from the ER doc saying that Maggies trach cultures grew out something else. We knew it was growing something within the 24 hours but just assumed it was going to be something that she always grows out. Well its not. She is growing a completely different bacteria and apparently it’s a rather large amount. So on top of the RSV she has another respiratory infection. We will be starting antibiotics today and are hopeful they will help. The doctor also told me that we should expect high fevers to continue until possibly the middle of the week. More than one doctor told me that we also need to know that this RSV is most likely going to last at least a month. So we need to really be careful with her and watch so very closely. The scary part is that she can still keep getting things on top of all of this.

As for how Maggie is doing, she is pretty sick. Her fevers are still quite high and her oxygen continues to get worse and worse each day, seeing it in the high 70‘s while awake, that was last night. We struggle with keeping oxygen on her while awake because it goes over her trach and she hates it and rips it off. She breathes so shallow and fast she is just exhausted. She has been retching, wheezing and coughing so much. I wish she could just get a break. She has also started the trend of losing weight again which is really scary. She is 14 lbs 6 oz and looks really terrible. We think she was experiencing some form of delirium last night because she just kept waking up and signing to brush her teeth over and over. I lost count of how many times we let her brush her teeth.

We have had many conversations on the phone with her doctors. They are very concerned for Maggie. We (Sean and I) are hopeful for Maggie. She has shown us time and time again what a strong little girl she is and how she surprises us all with everything she is faced with.

I will quickly update on Taveons test results. The biopsies all came back normal. The ph probe came back abnormal. Apparently Taveon has some really really severe reflux. But it’s a different kind of reflux and that is why its not showing up on the biopsies. Its so bad that they said that the reflux comes up his throat and just sits there for a really long time. He never clears it. So they are not sure whether he is aspirating it or not. He has been on meds for reflux before but we never saw results with that so we will be discussing what we will do next for him. He also has a swallow study in Feb and another appt with his ENT so we can discuss whether this is playing a part in why he is so sick all the time or not.

Thank you all so much for all of the thoughts and prayers. We really do appreciate all of the love that has been shown to our family. We are also so grateful for all of the dinners people are bring to our house. It really does help so much. Sean and I can barely think straight. While trying to keep the other kids busy and happy and Maggie happy, suctioned and comfortable. Luckily the kids got a break last night and got to spend the night at my moms. I heard they are having so much fun! They really needed that. As for all the people that are asking what they can do to help. We are so appreciative of those offers. I can’t think of anything at the moment except for continued prayers. I think that is the most important right now. If we do think of anything I will let you know. Thank you so much!!

1/19/2011

2011-01-25T07:21:00.001-08:00

I’ve been trying to get a post together talking about how things haven’t changed, which is a good thing. Maggie wasn’t getting any worse in this post I was going to put together. She was just staying the same holding on. Well……it didn’t last very long. We all know Maggie has been having fevers on and off, but pretty much on, most of the time for the past, probably 3 to 4 months. Well I didn’t think much of it when it jumped a little higher for a short time and then went back down to the lower fever. Then it jumped and stayed a little longer the next day and I started to get a little nervous, but I decided to just watch it. We then were woken up today by our nurse telling us that Maggie was at 104 and rising, and that was after tylenol had been given about 20 mins earlier. She also said that Maggie had a high heart rate.

We jumped up and started to find ways to get her fever down. We tried cold rags and she did not like that at all and she freaked if we even mentioned a bath. A bath just isn’t worth it for a kid that has a trach and doesn’t want to be in there. That could be an even bigger disaster so we settled on giving her a popsicle. After a bit the fever went up a little more and then started to come down. She kept her low grade fever which I was okay with. While looking for things to cool her down I emailed her doctor to see what she thought we should do. She emailed me back and told us to go in. She called the ER ahead of us and told them we were coming and explained Maggies complicated history the best she could. So we eventually headed there.

Once arriving at the ER we got right back and they started doing what they do and asking questions. At this time Maggies fever was low. She weighed 14 ½ pounds and was sucking a ring pop. We answered all of their questions and they seemed very overwhelmed with her complicated history. Not surprising they always do it seems. They were nice though and got right to getting an x-ray and a secretion culture. Maggies fever was starting to rise at this point. They contacted the doctor that told us to bring her in to see if she wanted anything specific tested for. We all agreed that we were not even going to attempt to get blood right then because nobody thought they would be able to get an IV in her. She is obviously dehydrated since her kidneys don’t work properly and she didn’t have any good places to draw from when they looked. So we were there for a couple of hours, probably our shortest stay in the ER ever. Then they said that they didn’t know what was wrong and that we could bring her home and wait for results from the culture which some would be ready by the evening. I wasn’t completely thrilled with this. I mean I didn’t want her to be admitted which we made clear when we got there, but I just want some more answers. By the time we left her fever was almost 103 and she was really tachycardic (fast heart rate). Even her respiratory rate was really fast and shallow. They were concerned but didn’t know what to do. So I asked them to talk with us and help set up a plan incase things got worse. So we did that and we agreed that we would have her admitted to the second floor but no other floors if she had to be admitted. They said they would help with that so we felt comfortable with the rest of our plan and headed home.

Once home Maggies fever continued to rise. She was very sleepy and just continued with a fast heart rate and respiratory rate. We were just counting down the time until we could call and get results. Oh and I’m sure everyone can guess what happened to her stomach because of this illness. Yep, that’s right it stopped. So after dinner (Maggie had a popsicle for dinner) we called to get results and she has RSV. For those that don’t know what this is, it’s a respiratory virus that is really serious and can turn into pneumonia. In a complex kid like Maggie it can be fatal. So its really scary. We are watching her very closely. We have a nurse so the hospital thought it would be best if we kept her home if we can handle it so that she doesn’t get something else on top of that to compromise her even more. One thing though, and we will bring her to the hospital. We are really nervous about this and are praying she doesn’t get pneumonia. Her lungs looked crappy in the x-ray today and are way under inflated as usual and this all puts her that much more at risk for a really bad outcome. Some of you are wondering if she got the RSV shots. The answer is no she didn’t. Someone either didn’t make the phone calls or the insurance wouldn’t cover it. We aren’t for sure at this point. So this all just stinks. Especially because we don’t bring Maggie anywhere. We don’t do much of anything so that she can stay as healthy as she can. It didn’t work.

We just want to thank everyone for all of the prayers!! We appreciate it so much! And everyone that has brought us dinner or taken our kids its been so nice! Also a lot of you have asked about Taveon and how he is doing. He is doing great!! His airway was really irritated from the breathing tube and he struggled with that for a couple of days but he is doing much better. We did receive results from his ph probe but I will go into that in another post. Thank you for everything.

1/11/2011

2011-01-12T06:47:00.000-08:00

I am going to start by updating on Taveon's surgery. He did really well recovering from the surgery. We expected he would since we didn’t give him versed. Whenever we give him that stuff he does horribly. He didn’t have to stay overnight like they wanted because he was doing so well and because the doctor knows we can handle this. He was so brave and walked back with the anesthesiologist. He did better oxygen wise during the surgery which was nice to hear. GI said that his stomach looked good and that everything seemed good in that area. We also expected this. ENT however said what we always hear, that his airway was not looking the way that it should. He has all sorts of bumps in his airway especially a little lower down. They have no idea why he has these or what its from. Their only guess is that he may either be refluxing and aspirating his reflux or aspirating when he eats. Based off of what GI saw, he does not think that Taveon is refluxing. Which we already kind of knew this already because when he had a biopsy of his esophagus earlier last year, it showed something but they weren’t sure what it was exactly and only thought to be reflux but not severe if it was reflux. If that makes sense. Anyway they inserted a bravo ( a little tiny probe thing that attaches to the esophagus) it’s a new kind of pH probe that they have. He just has to wear a monitor around his neck for 48 hours. Which is actually kind of annoying but we’ve had worse things so not too bad. We also have to chart every time he eats and chart how he is positioned every hour. See…….annoying. For anyone interested the probe doesn’t seem to bother him excepted when he swallows other things like food and drinks. But he is doing fine. Everyone at the hospital couldn’t get enough of him and just went on and on about what a cute little boy he is. I think it helped that he used his manners! He was not impressed with everyone that worked there calling cute. Because after all he is becoming a rough and tough man with big muscles!

So anyway the bumps in his airway aren’t good and they think that this problem is linked with his sinus deterioration and lung disease. So we need to find out what all this is so we can stop him from getting so sick all the time. They set up a swallow study for him next month so we can see if he is aspirating. Which I don’t really understand because he is four and he loves to eat so what would we do if he does aspirate? And he loves to drink even more than eating so there is no way he would be okay thickening his drinks. I guess we will discuss that after results. They really want to figure out what is wrong soon so his sinuses and lungs don’t get anymore damaged. Hopefully we will get some good information from some of these tests.

A Quick update on Mags. She is still about the same. Still having fevers and still just not feeling super great. She did have….I think it was two days of feeling a little better and even managed to get a tiny bit of coloring to her usually transparent skin. However she has since returned to the transparent skin look. We are still waiting for the cough assist but I think we should either get it tomorrow or the next day. We also need to get it in gear and schedule a meeting with palliative care. Those meetings are just never fun though, so we procrastinate. Other than that everything still the same with the rest of her.

Also just a quick response to a comment I received. I know it wasn’t a mean comment and I didn’t take it that way but I did want to say that, we do make every decision with Maggie the priority. She is so complex that even the doctors don’t know what to do. We are trying to get her as comfortable as possible but we are not going to skip steps and jump right to giving her morphine. There are other things that we can try first so we are going to try them. We have actually just gone through trialing lortab which did not work. We gave it a few times to see how it would work. Maggie had an opposite reaction with that as well. She got really agitated and things were really just not good with it. So unfortunately the doctors are not even sure she will respond well to morphine once we get to that point. Some of these meds are meds that she has had before without us recalling her getting super agitated and losing control, but for some reason her body is not accepting any of these things. So its not that we are against giving her something to make her comfortable, its just not working. We know where Maggie is and as much as we wished she was not at this stage in her life we are not in denial. We work very closely with her doctors here and in Atlanta to make sure things are best for Maggie not for Sean or me.

We really appreciate all of the prayers for Maggie and Taveon this week. We are so grateful for everyone that has helped us out with the kids or meals and everything! Thank you all so much!!

1/8/2011

2011-01-08T10:16:00.000-08:00

It looks like we will be adding a new piece of equipment to Maggie's collection. Her pulmo and I decided to have Maggie try the cough assist. We really need Maggie to inflate her lungs more. He actually talked to me more about trying the ventilator instead even though we know that its not really ideal because of her acidosis ( liver enzymes being so high that its causing her body not to work right and causing her to be over ventilated.) We both agreed that we should try something else, if there is something else, first. And that is where the cough assist came in. We will try this and if it does not end up working then we will rethink the ventilator. Its all so complicated, we have to try to find the balance and figure out which thing we do or don’t do is going to cause more damage. This is really hard to do right now. We just hope we are making all the right decisions for Maggie.

For those of you that are not familiar with the cough assist, it is a machine that has tubing that attaches to Maggie's trach. It will then force air into her lungs. It supposedly is not a fun thing to do. In fact some call it the suffocation machine because that is what it feels like. So basically we will try it out and if she does not tolerate it then we will be back at step one. We have never used this machine before so we don’t know what to expect. With the ventilator Maggie was on it all night long and it also would give her breathes and push air in her lungs to make sure they opened up all the way. But she was on a rate so a lot of the time it would end up breathing for her. I’m not sure exactly what the difference is between the two machines but we will find out soon I guess.

A few days ago Maggie went downhill pretty fast. She started having puss coming out of her ears and eyes and her bum was bleeding. She also had a pretty high fever that we couldn’t get down. We got her on some antibiotics and she has been doing a little better. She still has fevers throughout the day. She has definitely been weaker. We have had days where she can barely stand and others where she walks around all wobbly like a new walker. Her muscles have just gotten worse from all of this. We all know how things go when she gets antibiotics. She does not get completely well but just enough for her to have a little relieve and then it all comes back after a few days. We are hoping and praying that all of that won’t come back. Her new normal is definitely a lot worse than it was even just a few months ago.

Another thing that we have been struggling with is Maggie's tummy. It obviously does not work very well. But now we are having trouble with air getting in her tummy. I am talking a ton of air. We will vent her every couple hours and we can pull out around 540 cc’s of air almost every time. This is crazy! How in the world is this much air getting into her tummy and that quickly for that matter. We have tried the Farrell bags (a bag that attaches to her g-tube so that the air can constantly be vented out) and those do not work at all. So we are left to vent her all day long. This is another think that we need to figure out soon because it is causing her pain. Its super frustrating to say the least.

So now onto cardiology. We went to the appt and Maggie had so much anxiety that basically nothing got done. They couldn’t do an echo or anything. The doctor wants her to come back in Feb to try again, and is hoping we will have found something to calm her down by that time. Her doctor didn’t seem too worried that we couldn’t get it done but I’m not sure that this was really a good thing. She said that it was okay not to put her through it that day because of how upset Maggie was. This was because she said that even with the info that she gets there wasn’t really anything that she could do with it. That’s never a good thing to hear. I mean, we already know that there is nothing that can be done with her heart because of the problems Maggie has but to hear them say it just makes it that much worse. We are basically only doing these appts to see where she is functioning at. To see if we can see how quickly things are progressing. Another thing that the cardiologist had talked to us about was that she thinks that Maggies hypoglycemia (low blood sugar) is what might be causing all of her moods lately. Maggie has always had pretty low sugars when not on TPN but she never really has had symptoms from it. Well, the cardiologist thinks that maybe they are even lower and possibly causing her panic and making her freak out. So we will be looking further into this to see if this could be what is causing her to scream and throw tantrums all day long. For now we are going to try to specialize her diet even more to see if this helps at all.

Taveon has his surgery on Monday. Hopefully everything will go smoothly and hopefully we can get some good info so that we can make good decisions about what other surgery he will need and how soon.

Thank you for keeping Maggie in your thoughts and prayers. Things are just getting so difficult with her right now trying to find the right balance to keep her comfortable. We appreciate all of the love and support so much!! And we appreciate all of the nice comments and emails we have been getting.

12/31/2010

2011-01-05T13:21:00.000-08:00

New Years…………………..Really its been a tough year but there were lots of good times too. Its hard to think much about this new year to come. But I’ll tell you one thing, I am so happy to be laying right next to my sick little baby as we celebrate the end of this year and the beginning of the new year to come. That is very special to me. I have no idea what is in store for us in 2011 but we will continue to just take things one day at a time and trust and pray.
A quick update on Maggie (so many have asked). She is still pretty sick. She still looks terrible and still continues to get fevers. They think some of this is autonomic dysfunction. Unfortunately she has lost more weight and a few days ago at her weight check she was at 14 ½ pounds. Sadly I think she has probably lost a few more ounces since that. We continue to try to give her what she needs and she has even been taking in more but it doesn’t seem to be working. She is just not absorbing anything and this illness stops her stomach from doing much. It’s a scary balance. I look back on some pics I posted a couple of posts back and she looks so big in those. Its heart breaking to watch. She has been pretty uncomfortable and unhappy so we will be making an appt with palliative care to see what our next step will be. Maggie also has a cardiology appt this week with an echo. I’m not sure we really want to know what’s going on with that but we will find out in a few days.
As for the ventilator it looks like we will be holding off on that for a little bit. It seems that her liver is continuing to deteriorate which is still making her over ventilated even with such shallow breathing. Its not good to have too low carbon dioxide as well as too high. So we will be discussing more and revisiting all of this probably sometime next week to see if there is anything we can do to help her. I just really wish that our pulmonologist that knows her really well didn’t move. Its making things very difficult.
We appreciate the thoughts and prayers so much. Its been really hard these past few weeks. All Maggie wants to do is sleep (which she is a very light sleeper) and if she is not sleeping she is crying the entire time. We haven’t seen her really smile and laugh for a while and we really just want her to get over this (whatever it is) so she can feel better and enjoy some family time.

12/27/2010

2010-12-28T05:37:00.000-08:00

Well, we had Christmas, and we are so grateful that we were able to celebrate Christmas as a family with Maggie. Unfortunately things didn’t go as planned but we tried to make the best of it.

Maggie has had a fever for weeks now mostly its on the lower end but on Christmas morning she woke up with a fever of 101.7. We gave her Tylenol and it just continued to go up. She was pretty miserable all day long and had pretty low oxygen all day. She didn’t open any gifts that morning. We were lucky enough to have my mom and her family come over to watch the kids have Christmas. Maggie just rotated laying on me, Sean, and my mom. Later that day we went to my brothers house to celebrate with all of my siblings and their families. We had a lot of fun but Maggie was still completely miserable and her fever continued to rise. We were still very grateful that Maggie was able to spend Christmas with her aunts, uncles and cousins. We even got to skype my sister and her husband in New York to celebrate with them and watch them open their gifts and vice versa.

Over these past few days Maggie continues to feel crummy and is very tired which makes for tired parents with no sleep. She has been having trouble napping from some distractions outside. Its been pretty frustrating because she really is just so tired but then the noise outside just bothers her so much that she cannot sleep.

Along with the fevers she has had increased secretions, her tummy has stopped and has had bile coming out when venting her, and has been really pale and just looking awful. We hope and pray that this illness will be short lived but know that this has basically been how the past three months have been. Maggie really cannot afford to lose anymore weight and each illness that she gets takes everything out of her so she ends up losing more. We are praying so hard that she will be able to continue to fight and be strong. Each time she gets this sick we are very nervous seeing her look so terrible. Please pray that she will improve and have some good days for a little bit. We love her so much and are so lucky to have her in our family.

12/22/2010

2010-12-28T05:36:00.000-08:00

Well, we had a few doctor appts this week. First we met with the psychiatrist. That went okay. I really just think she doesn't know what to do. I think she was thrown off because Maggie had a ring pop so that made her different than her last appt. She is a little more agreeable when she has a sucker or ring pop. Maggie is very smart so she knows how to work everyone. It wasn't an especially helpful appt. When we pulled up to the building Maggie actually started to scream and have a panic attack. She was completely freaking out and did not want to go in. We decided that the prozac is not helpful so we have stopped that and are now going to try zoloft. Hopefully this will work since this is the last thing to try before turning to narcotics. Maggie has pretty much been a hysterical wreck these last few weeks. Its just escalating and its really sad to see her so upset all the time.

Today we met with another doctor. Its our go to doctor, the one that has been taking care of pretty much everything. Anyway we talked a lot about how much smaller Maggie is since her last visit with this doctor (about a month and a half to two months ago) and just how she is wasting. She was 15lbs today with clothes on. We discussed what we want to do or possibly change and the only thing we really want (that is realistic) is just for Maggie to be more comfortable and happy. So this doctor with follow up with the zoloft because the psychiatrist is so darn hard to get in to and can't get us in for a month even though she really wants to see us in two weeks. So whatever I'm not going to start a med and not be able to get a hold of the doctor if something doesn't work out. Maggie does not react like other people to meds. So this doctor said she would be available to help us and I email her all the time so I know I can get a hold of her if I need to. Plus she knows Maggie the best and I am more comfortable with her. We also discussed how we need to sit down with our other kids and talk about everything. Our kids know what is going on and we have talked about things openly we just haven’t sat down and looked them in the face and told them where we are at or let them ask questions. They do ask questions here and there but we haven’t just sat and had them get their questions out. So anyway its hard to explain. We may bring them in so that child life can help us explain to them what is going on a little better and help us answer any questions they may have. We haven’t completely decided if we will do this or not. Its been hard for Sean and me to think about doing this since it seems to even make things that much more real. The appt went well, I just think that we didn’t go into this appt expecting the doctor to have some magic cure and fix our baby so it wasn’t as stressful as some of the other appts we have had with her. We like this doctor and she has done a great job but I think we expect more from her than she can do. I think there are probably a lot of people that think that doctors can do everything or fix anything. Even though they can do a lot and they help a lot of people they can’t fix everyone and that is a hard reality.

The next doctor we saw was a new pulmonologist. That appt went well and he seemed very thorough. But as with most new doctors he couldn’t understand why a j-tube won’t work for Maggie or why a slow drip of formula 24 hours a day won’t work. I seriously had a hard time trying to go through all of that with him. I explained it as simply as I could and I am hoping our other doctor (from the previous paragraph) with help with getting him caught up. That is one thing I am exhausted from, is telling the story over and over and over again. Anyway he ordered some blood work and we should get that in the next day or two. Maggie did pretty good giving her blood, it was a finger poke since they didn’t think they could get an IV. I think finger pokes can be worse sometimes from all the squeezing they have to do. Normally they can’t get anything with that but this time I kept that hot pack on her finger for a really long time and she bled well. So well that it took her about an hour to stop bleeding. We were getting a little nervous because it took so long to stop. We also discussed going back on the ventilator at night. When Maggie was on the ventilator she had much much fewer respiratory infections or problems because it opened up her lungs all the way. The x-rays that we have gotten since being off of the ventilator have not been good. He went back to look at them and her lung volume is so small and they just don’t look good. So the thought is, if she doesn’t get sick as often then she may not lose so much weight. Because it takes a toll on her stomach every time she gets sick. The little energy that she has to help move things in her stomach all moves to help get her lungs working better and her stomach shuts down during this. So maybe she will even maintain where she is if she doesn’t get sick so much. So we will see about putting her back on the vent at night just to see if that may help with all of that. We won’t actually talk more about it or move on it until after the first of the year. If we decide to do this then it will be tricky because she will need to go inpatient to get the settings adjusted to her again. Its sick season right now so we will need to make sure that this really may help her before going ahead with it.

Over all the appts went okay. We really appreciate all of the nice comments from everybody showing their support and love for Maggie. Thank you to everyone so much for the prayers. We hope everyone has a Merry Christmas!!

12/15/10

2010-12-16T12:29:00.000-08:00

So since my last post I have had a lot of people come to me that don't understand why we are apprehensive about using morphine. This is totally fine. I wouldn't understand it if I didn't have such a sick child or if the doctors didn't go into great detail all of the pros and the cons. So I'm going to try to explain Maggie's situation a little better and where Sean and I are at with this all.

Morphine can be very scary for someone who is weaker and breathes pretty shallow. Of course we don't want Maggie to be in pain and we are definitely concerned with quality of life for her but we also don't want to rush things and we want to make sure we try everything before moving to morphine.

We are also concerned about Maggie's heart rate dropping more. Now, her cardiologist has made it clear that she does not believe that morphine will lower Maggie's heart rate. However when Maggie is in pain her heart rate is in the mid 50's to 60. If we even give her a little tylenol (remember Maggie can't have motrin because of bleeding problems. But with mito tylenol should be avoided, we have to do what we have to do) to take the edge off, she will relax a little more and her heart rate will be in the 40's sometimes high 30's. Or if she is just not in a lot of pain it will be around that. So if she was taking morphine and that took away all the pain then she would really relax and its scary to think about where her heart rate would be with no pain.

Right now her doctors have told us that they believe Maggie is in her end of life stage so we should really try to make her comfortable hence the morphine. End of life stage doesn't necessarily mean that she is going to die right now. It just means that her body is not working the right way and things are slowly shutting down. They don't know how long Maggie has and neither do we. That is why we don't want to jump into giving her morphine until we have tried absolutely everything else that we can. Morphine is the last step for us. A lot of people take morphine when they have had a surgery or for other reasons related to pain. However when you are in your end of life stage, basically it is comfort care to help you just live your remaining time more comfortably. For one, we don't want to believe that Maggie is in her end of life stage and two, we just don't know that we have tried everything yet. I guess you could say we are looking for a miracle.

Maggie's organs are all struggling right now. Her biggest problems are her gut and her lungs right now. To be honest there may be others we should be more concerned about but since we haven't been doing regular blood tests anymore, because Maggie is such a hard stick and its just torture for her when they generally can't get IV access anyway. We aren't sure where they are functioning at this point. Maggie rarely goes pee anymore. She has always had kidney problems but I'm sure they are worse now with having a wet diaper only every few days. And we will see where her heart is at when we have her appt in Jan. Her liver enzyme have been high for probably the last year and I'm sure those are just getting worse as well. The only other way to get regular blood tests would be from a central line which is not something anybody wants to do right now. For anyone that is a new reader. Maggie's stomach and intestines push bacteria into her blood stream which is how she gets septic. Her stomach wall is very weak and so no matter what anyone does she will always have this problem. As the gut gets worse and worse from this disease it will cause her to get more and more infections. She has even had infections without a line in her. Just because we feed her too much and she doesn't digest the food. It sits in her stomach and more bacteria is forced into her bloodstream.

So this is where we are at right now. Are we bad parents for not giving Maggie Morphine when we know she is in pain and nothing else has worked? I don't know, some might think so but we just want to make sure to cover everything before we give in and accept that she is in her end of life stage and its time for morphine. None of these decisions are easy. No two mito cases are the same so we can't just do what someone else is doing for their kid. What works for one doesn't always mean it will work for all or that its best for all. So we just try to go off of Maggie and how she is feeling. This is all very difficult for us, we just try to take things one day at a time. We just want her to be happy. She is so loved by Sean, me and the kids. And by so many other people, some she has not even met. I hope I have explained this well enough. Let me know if I've left something out.

Mags has a few appts next week so maybe we will know more. We appreciate all of the support and all of the thoughts and prayers!

12/9/10

2010-12-16T12:28:00.000-08:00

I hate posting lately. Everything seems to be progressively getting worse with Maggie and that is not fun to post about. I know that progressively is how this disease works but this just sucks. And things are moving quickly lately.

So when we left for Florida Maggie was on two different strong antibiotics. She was on one for 28 days and the other for 14 days. The 14 day one ended, I think it was on Sunday morning or maybe Monday.(I could be wrong on the day but that's what I think it was) Anyway she was still doing the other antibiotic. That late night early morning she got a fever. She has had one everyday since. At night she comes down a little but not a ton considering how low her usual temp is. Okay so let me back up a minute. When she was put on the 14 day antibiotic things respiratory wise just kind of stayed the same. Secretions didn't get better or worse. Fevers went away though. So when the antibiotic ended and she resumed fevers we were really concerned and bummed. Her secretions have gotten much worse as well. This is all happening while still being on an antibiotic. This other one will be ending in a couple of days and I don't even want to think about what will happen then. Right now we are waiting to get in to see some new pulmonologist that is suppose to be great. We have an appt the week of Christmas. Once this other antibiotic is finished, if things get any worse then we are not going to wait for this appt we are just going to bring her in. Sadly I'm not that confident in the Emergency room department. So I really don't want to have to do this. Also while Maggie was on both antibiotics she was able to maintain weight at 15 lbs 8 oz. Now that we have stopped that antibiotic she is losing weight again. For certain meals during the day I have tried to give her a little more to eat because I really don't want her to lose anymore weight. But we all know how that goes when we give her more than she can handle. Everything stops and her belly blows up. I can't help it, its a natural reaction I think.

We have also noticed recently that there is some bulging around her g-tube. Its on the half that is closer to her belly button. Anyway we have no idea what it is so we will need to have it looked at.

We met with Maggie's new psychiatrist and we really like her. She had some really good ideas of things we can try for Maggie and her sensory problems. Remember how I was saying that Maggie was freaking out a little more while we were in Florida? Well we think we have found the answer to that. Her psychiatrist thinks that Maggie's dose on her prozac was too low, making her agitated and bringing out her sensory problems even more. Technically with Maggie's weight it shouldn't be a low dose but since she doesn't absorb things the right way it ends up being too low. Maggie had the reaction that other people get when they experience the same problems. So we are going to try and bump it up a little and see if that helps. If it doesn't then we have another plan but I'm hoping that maybe it will work. She watched Maggie for an hour and got a pretty good feel for what is going on. We jut let Maggie do what she does at home without trying to stop her so that her doctor could see. Well what Maggie does at home is throw fits and tantrums and does a lot of freaking out. Mostly she can be calmed by me holding her and singing or just putting my face on hers but this doesn't always work. Anyway this doctor thinks that Maggie has belly pain as well. This has been the million dollar question for the past two years. Nobody can determine if she is having belly pain or if its just something else. Well, this doctor thinks its belly pain. Partly from watching her and partly from working with another little girl that is old enough to talk that has basically the same tummy problems as Maggie. She says it hurts. Now if only Maggie could communicate this to us without just holding her tummy and wincing, maybe some of the other doctors would believe that she is in pain. I know, crazy that they don't take that as being in pain. This just means that in addition to an anxiety medication they think she will probably need the morphine as well. This doesn't make me happy. There is potential for this lowering Maggie's heart rate. Also Maggie already breathes very shallow so much so that we can't tell she is breathing a lot of the time. Morphine could make her breathe even more shallow. I'm not ready to go there yet. So we are going to wait and see how things go with everything else and readdress this at a later date.

Taveon's surgery is scheduled for the second week in Jan. Sadly he will probably at least be there overnight. I know this should be a breeze considering what we go through with Maggie but I just hate having my kids in the hospital around this time of year with all the sick kids. He really needs this though. His ears are really bothering him and with some of this other stuff they are doing I hope they can get to the bottom of his problems.

I just want to thank everyone for keeping Maggie in their prayers. We are really worried about this little girl.

12/6/2010

2010-12-06T08:34:00.000-08:00

Well its been a little bit but we are still here! We went on Maggie's Make-A-Wish trip and have been back just a couple of days recovering.

The trip started out a little rough. We left when Maggie wasn't feeling super great and was just starting another antibiotic. She ended up sleeping on the plane which was good. She had a lot of anxiety at the airport and when we got to the Give Kids the World Village. For some reason we thought we would spend the next day (which was a Saturday) at Disney World. Not a good idea. It was so overwhelming for Maggie. She definitely does not like people and that place was jam packed full of people. We went on a few rides and Maggie kind of just zoned out while we were there. Well, at least any time she wasn't completely losing it she was zoned. We decided that it was not the place for Maggie and headed back to the village after a few hours. Hailey and Taveon were exhausted and had a really good time despite the many times we had to stop to calm Maggie down. When Maggie gets anxiety she wants to eat nonstop and have a sucker constantly in her mouth. So she ate a little more than we would have liked for her which gave us anxiety because we were so worried when things stopped moving and she just got bigger and bigger, we thought for sure we were going to be dealing with a blood infection from the bacteria in her gut. Which has happened a few times before without a central line. This is why we have to make sure things don't just sit in her little tummy. Its pretty much a losing battle.

Anyway on Sunday we decided to take it easy and try something that we thought Maggie would like. We went to the Beach! I layed on a towel holding Maggie and she loved it! She wasn't so sure about the sand. We did get her to walk on it a little and touch it once with her hand but she would freak out everytime she saw me with sand on my feet or hands. She wasn't too fond of the water but surprisingly she did let us put her feet in it once. But that was it after that. For the most part we just snuggled while watching the kids play in the water and look for shells with Sean and grandma. While holding Maggie she was the calmest I have ever felt her be while awake. I could just feel her body completely relax. It was the best feeling ever! I wish she could feel that way all the time. She loved being there so much!

On Monday we went to Universal Studios! Now that was a really fun experience. They were so nice there and we all had a really good time, even Maggie liked it for the most part. It wasn't as busy as Disney World except for the Harry Potter area. That was a little too much for Mags but we just looked around for a bit and went on our way. We did get to have a private tour of the Harry Potter castle which was awesome. And then Sean and Hailey got to skip the huge line for the ride and got right on. They even gave Taveon and Maggie certificates to come back and ride that ride without waiting in line when they get tall enough. Hailey is crazy and just loves all those scary rides. Sean got so sick and felt like puking for a few hours after that ride. After that the kids rode some rides with grandma while we took care of Maggie. She wasn't feeling up for rides that day. We headed over to the superhero area where Taveon was in heaven and even Hailey was loving it. While there, all of the superheros came riding out on four wheelers. The kids loved that. Then they spread out and started signing autographs. So we were trying to move quickly to get them all and get pics. After getting almost all of them we were waiting to see Spider-man, a guy comes up to us and asks if we would like a picture with all of the superheros together. We were so excited and said yes of course. He got all of those guys to finish up and took us over to an area where we waited for them to all come over. Maggie was of course overwhelmed and needed a sucker. So she was not happy and was taking her time picking one out. The superheros got all ready for us and we were still waiting on Maggie. They were so patient with her and were so good with her and the other kids. Finally we got in for the pic and of course Maggie didn't want to cooperate. After pics they hung out for a few minutes and talked to us and our kids. They were trying to talk to Maggie and none of them cared that she was being so mean to them. She can't talk but she can get her voice heard if she screams so she just kept yelling at them and giving them angry eyebrows, they were fine with that. They treated her as if they had known her for a really long time. We are so grateful to them for doing that, it made everyon'es day! Funny thing is that we were getting ready to leave right before they came out. We are so glad we stayed. And everytime we show Maggie the pics she gets so excited and loves looking at it. To top the night off we had Mayor Clayton ( a bunny) come and tuck the kids into bed. They loved it. Maggie nosomuch but Hailey and Taveon thought it was the best thing ever.

Tuesday everyone was really tired and exhausted. I was getting sick and my body ached. But we don't get to be here everyday so we decided to give Maggie and my mom a break ( my moms feet were killing her from not wearing the right shoes). Sean and I decided that maybe it would be easier to try Disney World again without a stroller and an unhappy kid. So we went to the Animal Kingdom first. That was pretty good but my body was just aching so bad I had a hard time enjoying anything. After looking around there for a couple of hours we went to the Magic Kingdom. Taveon was so exhausted he could barely move and Hailey was pretty tired too. We got in there only to find out that we didn't have a lot of time until they closed for a Christmas thing which our tickets didn't cover. So basically we would maybe get to ride one ride after trying to squeeze our way through all of the people. Seriously that place is jam packed full of people. The kids and I just couldn't do it. Taveon was crying because he was so tired and I wanted to cry because I was so sick. We decided it would be best to head back to the village and rest up for the next day. While we were out my mom and Mags went on a walk through the village and got to look at all the fun stuff. My mom said that Maggie had so much fun and was relaxed she only needed one sucker. They really enjoyed having that time together. Taveon slept on the short ride home from Disney which was enough to give him a little more energy. So Sean, Hailey and Taveon decieded to go swimming at the village., There was a BBQ and swimming and the kids absolutely loved it. My mom, Maggie and I ran to the store to grab her some comfy shoes and then relaxed while the kids were swimming.

Wednesday. after taking some Advil, we decided to take it easy in the morning and took the kids horseback riding in the village. That was an ordeal. As usual Hailey and Taveon loved it but poor little Maggie wanted to ride but when it came down to it she totally couldn't handle it. So no riding for her. After that we headed over to Sea World. That was a good place to go as well because that was also not very busy so Maggie could enjoy it a little more. She actually slept a lot there since she still wasn't feeling super great. The kids rode some rides and we saw the Polar Express and did that ride. Then we headed over to feed the dolphins. The kids thought that was awesome. I tried not to think about the gross fish we had to feed them because I really wanted to try and get Maggie to pet the dolphin but I had no luck with that. However she got an up close view of one. I was holding her in my one arm and in order to pet the dolphin before I fed him I had to hold the fish in the hand that I was holding Maggie with. Anyway I went to pet the dolphin and the thing came clear up out of the water to try and get the fish. I screamed and Maggie wasn't fazed by the dolphin in her face. They had people taking pics there and they ended up getting that. It didn't show quite how far up the dolphin came but he is still a good bit out of the water on the pic. We bought that pic but I don't know how to use the scanner yet so I will have to wait to post that pic. Anyway after that we walked around a little more and then headed back. We decided that we wanted to take Hailey and Taveon to Medieval Times for dinner. We knew Maggie wouldn't enjoy that so my mom offered to hang out with Mags. All I have to say is that the expression on the kids faces during the tournament said it all. They absolutely loved every minute of it. They were just amazed by it. Taveon wasn't super excited to eat without utensils but Sean managed to feed him by hand so he wouldn't get dirty. Weird I know, what little four year old boy cares about being dirty? And then there was the incident where Haiely had to go to the bathroom but didn't want to miss anything so on her way back she was running and wasn't watching what she was doing and she went flying head first under the table. I didn't see it but Sean thought for sure we would be taking her to the ER. She was fine and didn't get hurt too bad just a bruise on her leg. But when she fell she somehow kicked her soup bowl and tomato soup went flying everywhere. It was a sight to see. Any way all was good after that until Taveon had to go to the bathroom luckily we paced him and it all worked out okay. But he was so funny because he couldn't take his eyes off of the knights and he leans over to me and

says "mom, I really have to go to the bathroom"
me: "then tell your dad to take you to the bathroom"
T: "I can't I don't want to miss anything"
me: "You're going to miss a lot more if you pee your pants and we have to leave"
T: "Okay I will go really fast"

The entire walk to the bathroom still can't take his eyes off the knights, runs into the bathroom and runs back out staring at the knights. So even though that place is outrageously priced it was well worth every penny for the look on their faces.

So let's see, Thursday! This was our last day, well, half day. We decided to hang out at the village and look at all of the stuff and get some pics and just try to relax before our long flight home at 6 pm. This ended up being a lot of fun. Maggie didn't really want to walk anywhere the entire trip but there were hardly any people around so we were able to get her to walk a bit and she really had a good time. She was running back and forth from me and Sean and putting her finger up to her lips to say shhhh and then she would hurry and tickle our feet. It was so cute. Then all three of them had so much fun playing with acorns. Who would've thought? We got some ice cream which they loved and Maggie was in heaven. Until she shoved a cherry in her mouth so I wouldn't take it only to find out that she really does not like cherries at all. After the cute disgusted look on her face she grabs the chewed up cherry out of her mouth and throws it on the floor and continues to laugh and make the disgusted look on her face while shaking her head no. It was really the cutest thing ever. She couldn't get that cherry far away from her fast enough. It was a fun last day for sure.

We are so grateful to be able to make some memories. Everyone who donates to Make-A-Wish and Give Kids the World, we can't thank you enough!! Thank you! Thank you! Thank you!

As for a quick update on Maggie. She was sick the whole trip but was still able to have some fun. Even after eating way more than we are use to her eating and having a bloated belly she is still hanging out at 15 1/2 lbs. And even after being on these two strong antibiotics things don't really seem to be improving respiratory wise. I'm afraid this might just be part of the new normal for her. She has been really cuddly and more tired lately. When she is not cuddling us or sleeping she is throwing some massive tantrums. We can tell she is just not feeling well. I have run out of room to post. So Sorry!

11/22/2010

2010-12-06T08:33:00.000-08:00

Where to start......Well I weighed Maggie today with her clothes on and she was 15 lbs 8 oz. I really just can't talk about that right now. We are meeting with some doctors tomorrow to discuss again. Maggie is still pretty sick with on and off fevers. The antibiotics don't seem to be doing anything. I am really hoping that the meeting tomorrow will help with a treatment plan and quick since we will be leaving for the Make-A-Wish trip in a few days. All we need is one antibiotic that will clear things up and she will be great....well, good, maybe. The hard part is finding the one antibiotic that will work. I feel confident that we will be able to come up with something at the meeting tomorrow. Every time we talk about the trip Maggie gets really excited and gets a huge smile and throws her hands up in the air to let us know how excited she is. I really want her to be well to enjoy it. Between being sick and the accidental feeding her a little more than she can handle, is all taking a toll on her body. Everything seemed to shut down for a couple days and that is where the weight loss comes in. I think we have finally gotten her to a place with her feedings that she can tolerate and still have things semi working. Like I've said in the past, whatever we feed her comes out looking the same way it went in. Including her suppositories going in the other end and coming out the same way we put it in many hours later.

This is all very frustrating, so much so that I don't even know what to write to update everyone. I've been having multiple panic attacks a day. This is just all so scary to watch and be so helpless. Maggie seems happy when she is feeling well. We feel so much better when she is joking around and making us laugh by tickling our feet. She cracks up when she sees a cat outside and she signs that its going potty, when it really isn't, but she thinks thats hilarious. Or when she tells us that grandmas going to have a baby, which she's not;-). She laughs forever. I love these moments and I want them to be all the time. Unfortunately they aren't all the time since she has been so sick so often, she just can't shake this respiratory infection so things can't stabilize until we can get her well from a respiratory standpoint.

We had quite the day yesterday with the power being out for about 18 hours. This is so hard when you have a kid that depends on electricity. There were so many people without power from the storm that they couldn't get to ours for a while. We explained to them that our child has medical needs and needs to have power for her equipment to work but that didn't seem to make a difference. So eventually we got some help from my mom and her boyfriend and they were able to get transfered from the power company to the fire department to get us a generator so that we could run her equipment. They ended up having to give us their biggest one because of all the stuff that we had and even then they were a little worried that everything wouldn't be able to run. It ended up working out for the time that we needed it before the power came back on. Thank you to the fire department for the help! Poor Maggie was layered with so many clothes and her little body was still so cold. We ended up taking all of her oxygen tanks out of the house so we could get the fireplace going. Once we had the generator we could put a space heater on and use the oxygen concentrator but luckily before we needed to do that the power came back on. That was the longest 18 hours ever. We tried to keep busy and not think too much about it by decorating for Christmas. What can I say we are early but we won't be here next week and didn't want to have to worry about that and unpacking so we went ahead and did it. Anyway, I'm sure sitting in the cold didn't help with the respiratory issues either. We tried to keep her bundled up and by the fire as best we could. We had no idea that the power would be off that long. We got an ETA from them and the actual time it came back on was 8 hours after the time they thought they would have it back on. Oh well, I'm just happy its on now.

I think that sums things up for now. Please pray we can find something that will work for the respiratory part so that she doesn't lose anymore weight. We hope everyone has a great healthy holiday!!

11/16/2010

2010-11-19T07:50:00.000-08:00

So it seems that the never ending illnesses have hit. Maggies spirits seem to be holding up pretty okay so far. We started the tobi (breathing treatment antibiotic), this will go for 28 days. Despite this on Saturday Maggie woke up and seemed to be her normal self. We went to a movie with hopekids in the morning and by the end of the movie she was starting to look not so good. We had a blessing for my sisters baby in the afternoon to go to and by that time she was just looking aweful. Her eyes were bright red and all around her eyes. She was as pale as she could be. She is always very pale but I think the red eyes made it worse. Her stomach, once again was hard and very distended. And she really was just miserable. By evening she seriously was not doing well at all. We had family in town so we were trying to spend time with them but Maggie needed to be home. Sean offered to take her home and get her some rest so that me and the other kids could visit with my family. She was still not feeling back to normal the next day but doing a little better. But then she must have gotten a stomach bug. She has been having trouble in the pooping area. Well, we always have trouble there but it was much different than we are use to. We are just really lucky that nothing tried to come up the other way this time around. She has just been complaining about her tummy and if anything else bumps into her or if she bumps into something she is a lot more sensitive. I'm hoping she will be able to recover from these things with minimal damage. She was 16 lbs before this and is losing more so we will have to see where she is when these sicknesses stop. Poor baby.

Hailey is feeling better since the last post. Its so strange how she goes through these weird cycles of feeling like that. Now that we have the glucose meter I can see that her blood sugars are definitely dropping when she has these episodes. So I guess we will need to talk to the doctor about this.

Taveon on the other hand is like Maggie and has been sick forever. He has seriously had some type of cold or something since September. I think it was on Sunday that he got the croup again. I don't understand. His ears are draining all over the place, well one of them is. Its just so frustrating. He doesn't really seem too bothered by it until he tries to sleep and can't breathe because his airway is closing up. He really sounds like he is suffocating. I hope everyone will clear up soon! T has also been complaining and crying from headaches a lot lately. I'm not sure what these are from but he is getting them a lot. He won't come out and tell me he has one. I will just look over at him and he will be crying and holding his head and when I ask him what is wrong he says that he has a headache in the front of his head. He really won't tell me when something is hurting him because he is afraid to go to the doctor. So I know he must be in a lot of pain to be crying and then to tell me whats going on.

Seriously I really do realize how my kids fall apart around this time of the year. Although this is the first year for Hailey to have these problems. Taveon has had trouble since he was a baby. The ear infections and constant yucky coughing and runny noses and every February he would get RSV. So I am use to him having problems I just thought he would grow out of them or at least not be as bad since having his adnoids and tonsils removed. I guess I was wrong! Good times, good times!!

So, onto some better news. We went and did the wish room last week! It was really amazing. We were lucky to be able to have my mom and my siblings with their spouses come and be there for it. Even my sister and her husband from New York were able to be there. They are suppose to be really just a few people but we had great wish granters that were soooo nice. One of the wish granters is my brother in laws (the one from New York) mom so it just made things so much better for her to be able to be a part of it. I'm a little bummed because we didn't get a family pic with the wish granters but I'm sure we can do that when we see them next. We got a lot of other pics that I will have to post when I get them from my sister. If you can't tell she is the photographer.

I still have a lot of mixed emotions about the whole Make-A-Wish thing but from talking to other people in similar situations they have some of the same feelings as I do. Its nice to be able to talk to someone about some of my feelings about all of this. We are very greatful for this trip to go and do something fun as a family. Maggie gets really excited everytime we talk about it. We will be leaving really soon, the end of next week!! I'm hoping and praying the kids are feeling well and Maggie is still excited to go!!

11/10/2010

2010-11-19T07:47:00.000-08:00

A long post!

Taveon is 4!!! T had a birthday on the 7th. He is really excited to be a year older! He got some good gifts. His big gift was his new bike. Its a tad too big though, I figure by spring he will probably be fine though. His bike came with training wheels and when we joke about putting them on he doesn't know how to really respond. He tries to be really nice to us and explains that he doesn't need them and he hasn't used them for a very long time. Of course we know this he is a really great bike rider and tries to even do tricks. When him and Sean race on their bikes Taveon wins a lot or is really close. The kid is fast. But I have to say its funny to mess with him a little. He is so polite about it.

We wanted to do something fun with him since his last two birthdays Maggie was in the hospital. We took him to a fun place with an arcade and rides and he loved it and kept telling us that it was the best birthday ever! We ended up taking Maggie to my moms since she hasn't been feeling well. She had a good nap there. We would've taken her with us if she was doing a little better. But I didn't want her to just be miserable. Some friends of ours offered to bring us dinner, so we accepted. Thank you so much for that. Another friend/neighbor offered to make Taveons cake so we also accepted. Thank you very much for that too! Without these things we probably wouldn't have had a very good evening. With the stressful week we were having I completely forgot about a cake and we also hadn't gone grocery shopping so that would've been tricky. Everything was much appreciated!

Taveon had an ENT appt today. I tell you, my kids don't have the best luck with health. I feel really bad because this has been neglected and I know he has been in pain but we have been so wrapped up in Maggie we just try our best to treat Taveon at home. Its also really scary to bring him to the doctor for fear that.....well......it might go like today. T had fluid in his ears as usual, they can't tell for sure if its infection but thats what they are going with because its kind of smelly. Not surprising, I know. I can literally count on my hand how many times we have ever brought him to the doctor and he DIDN'T have an infection. Anyway so one of the tubes is clogged. The doctor wants them both replaced. We talked for a minute about not replacing them thinking that if they don't do any good anyway then maybe don't replace them. But that was quickly changed by the doctor because since he has had tubes since he was nine months old and multiple sets he thinks that he will definitely be in more pain not replacing them when he gets the infections. He would really rather not trial that. So anyway he is really concerned because Taveon keeps getting so sick, croup in Sept and colds back to back since then. When Taveon had his MRI last year he had severe damage to his sinuses. So for him to keep having colds/sinus infections its just ruining them even more. His doctor really wants to wait for sinus surgery until he is seven or eight but he is not sure we can wait that long if we don't figure out what is going on. So it came down to it that we are going to get new tubes and while doing that have GI do biopsies of his stomach and intestines and then attach a pH probe to his esophagus to see if he is refluxing. This could be a little part of the problem. We have done other testing before to see if he is refluxing but nothing came back. This is why we are having GI get involved because it could be a different type of reflux or something like that. I have no idea what he was talking about! Anyway we will be doing these things soon. The doctor wants them done before cold and flu season gets worse. Which reminds me we also need to see pulmo and get them to order another swallow study because we never went to it the last time they ordered it. They think he aspirates. This could be the cause of his lung disease. So yep, this is why I hate going to the doctors. There is always something wrong. But I guess I would rather have things treated and fixed then to have him lose his hearing or something else. Everything is a little more stressful with his health now that they think he has mito too. I want to keep him as healthy as I can.
Yes, Hailey is my normally healthy one. But the last few days she has been extremely tired. Today she came home from school and layed on the couch and fell asleep, very unlike her. I tested her blood sugar and she was low, not extremely low but low. We fed her but I haven't retested her again. I can tell we are going to have a loooonnnng winter. I need her to stay my healthy kid. Hopefully she will bounce back soon!

And now for Maggie. She is still at 16 lbs, looking not so hot. Very tired and starting to get conjested again. She just really doesn't look well. Her stomach is very frustrating. Or maybe we are just trying to move too fast. So we are feeding her little meals and things seem to be moving okay so then we think lets try to feed her a little more and everything shuts down. The other day her poor tummy was just so big I was venting (trying to get air out through her g-tube) her a lot more than usual. Anyway its the same cycle over and over and over. Now that she seems to be getting sick again I'm really worried about things completely stopping again and her losing even more. They are barely moving as it is, on a good day. This is all so scary. I really hate this disease. Its making my poor baby suffer and a lot of other kids too. Its so frustrating. Right now we are just trying to take things slow and try to look towards something positive. Like tomorrow Maggie gets to go to the wish room! But I'm not completely convinced that this is a real positive. I mean we are very grateful for this and all of its amazingness but I would rather she didn't need to have a wish at all. I know I'm becoming a real downer lately, it's just that I think I'm really starting to see whats happening. For the last two plus years I have been so consumed with fixing her and now that we have pretty much tried everything there is nothing more to do. Now I'm having more time to watch my daughter deteriorate right before my eyes and there is nothing I can do to stop it. There are things I can do or give her to make her comfortable but even that is proving to be difficult. I use to think and be hopeful that we would find a cure before she passed but now I'm realizing that its probably not going to happen. Each time she gets sick we see the progression moving forward. Anyway we will take the wish granting as a positive even if its bittersweet. We are so thankful there are organizations like this out there so that all the kids in these aweful situations can have a wish.

Thank you so much for the volunteers at Make-A-Wish!! Thank you to our friends that helped us have dinner and cake on Taveons birthday!! Thank you to everyone that continues to pray for Maggie!! We appreciate everyone so much!

11/6/2010

2010-11-08T11:30:00.000-08:00

Just an update on Maggie. She has lost some more weight and is now at 16 lbs. These respiratory infections definitely take a toll on her little body. It looks like we will probably be starting the other antibiotic next week. I was hoping that maybe her body would be able to fight this bacteria on its own since it is one that she has had before without problems. Just the last few times we have had to treat it because it is affecting her so much. Maggie has been up and down. One day she won't stop crying and throwing tantrums and the next day she does pretty okay for a lot of the day. Well, I guess its not really every other day its more every few days she will throw a good day in the mix. We are still looking to find the right med to help her be more comfortable.

We can see that other organs are not working as well as they were. Which is sad to see.

We heard back from Make-A-Wish. One of our wish granters we know and are really excited that she will be a part of all of this. She knows that Maggie needs to do this ASAP and is really moving things quickly for us. Maggie will be going to the wish room next week! We are hoping she can stay strong for her wish. I know she will just love it so much!

To be honest we really don't know how long Maggie has. Each illness is just too much for her and its nearly impossible to keep her from germs. We do our normal washing and sanitizing hands all day long and changing clothes when the kids come home from school but she seems to have such a weaker immune system lately. Her heart rate has found a new normal at 40 - 50 and going into the thirties a lot more. Her old heart rate was 50 - 60 with occasional drops in the 40's and 30's. We are just so thankful for each day we get to spend with her and pray that we will have many more to come.

Thank you for all of the thoughts and prayers, love and support. We appreciate it so much!

11/3/2010

2010-11-03T10:10:00.001-07:00

Two years ago today our sweet baby girl got a tracheostomy. I could've never imagined how much our lives, in every aspect, would change. I am so thankful for this trach because I know without it she would not be here today.

It was two years ago that I walked into the PICU seeing my baby girl for the first time with a trach. At that moment I never thought I could get use to it and I cried for her. We never thought that after a failed attempt to double the size of her throat and fix things up in her airway she would ever need to be trached. She did though, and we could instantly see the results of this trach with her much easier breathing and blue episodes that had stopped. We, the doctors, Sean and I, had no idea what exactly her airway problems were until they went in to do the surgery. They then found that not only was her airway very floppy and her epiglottis very messed up but her airway was the size of a premature baby. She was four months old. They had not expected this and had not ordered a custom trach since the smallest trach they had on hand was not small enough. They eventually were able to get that trach in because they had no other option. This made for really hard trach changes. It was so hard to get this trach in and out.

At first it seemed as if she couldn't get use to it as she had withdrew from everyone. Her smiles had stopped and she wouldn't even look at us. I think it upset her just as much as it upset us not to be able to hear herself cry. Eventually after moving out of the PICU she started to act more like herself. It was a very slow process and we were all worried about her.

We had no idea how much more complicated things would get in the same hospital stay. At this time Maggie weighed 10 lbs 6 oz. (She weighed this same amount 8 months later on her one year birthday) Because she needed to get more calories they put a NG tube in her. Not long after that was placed we noticed a big problem, Maggies formula was coming out of her trach. This meant that she was aspirating. We new she had severe reflux before this but did not know that she was aspirating it. So the next step was an NJ tube. This is when we found out that her anatomy in her stomach/intestines was abnormal. The radiologist had a really hard time getting this tube in and almost gave up. After one last attempt he finally got it in. We thought things were fine. After about a month and a half of having this tube, Maggie continued to have formula come out of her trach. She was refluxing the formula out of her intestines and into her stomach and then refluxing more from there. We decided she needed to have the nissen to keep from refluxing so far up and aspirating and placed a g-tube button in her tummy. Before she received the g-tube the surgeon came into us and told us that he thought she was malrotated (stomach and intestines flipped). Turns out she wasn't malrotated but this is when we discovered just how unusual her anatomy was. We thought this would all be temporary even though we did have a few doctors telling us about this mitochondrial disease that they thought she may have. We continued to believe that she would get past this and would have her trach removed in a year. We also thought the feeding tube would be temporary and that she would eventually start to gain weight. All the while putting the possibility of her having something more serious to the back of our heads. At least for a few months.

I do believe that if we did not trach Maggie she wouldn't be here. There were just too many times that we found her not breathing or responding to us. And although she has a progressive disease I think we have given Maggie a few years to enjoy and be with her family and the people that love her. I wouldn't change anything.

I appreciate all of the nice comments that were posted and a few that have posted things that I use to know and had forgotten them during this stressful time. I thank you for reminding me what is important and not give up hope. I do not regret not putting Maggie back on TPN. I am just starting to panic seeing her losing more weight and wondered if maybe now may be the time to rethink this. Maggie has lost some more weight with this newest lung infection. However her respriatory status is improving. So we try to remain hopeful that she will stabilize herself. We will be meeting with the palliative care team and some of her other doctors to go over the changes in Maggie over the past few months and see where we are and what needs to happen. Thank you all for the continued prayers and support. Words cannot describe how much it means to us.

11/1/2010

2010-11-02T18:33:00.000-07:00

Maggie seems to be about the same since starting the antibiotic. She is very tired. I won't go over everything because I have said it all before but everything else is the same. Nothing has improved yet. We are still hopeful that she will start to feel better and things will start to work.

I can't function lately. At our last appt the doctor told us how critical Maggie's weight is. Which I think we knew this already but feel helpless. These thoughts are stuck in my head and I can't stop thinking about what we should or shouldn't do. I have literally been sick over this all and have not been able to sleep. Should we do TPN? I am so scared to do this and I know this is our only other "option". What if she dies after getting septic in a couple to a few weeks? Could I live with myself? This is really all I think about everyday. I feel okay with things right now because Maggie has been holding at 16 1/2 pounds. She has been this for a couple of months now. Isn't that good that she has been able to hold there? I don't want to think about it anymore but can't seem to stop. Maggie has continued to have a low heart rate. It should be higher when she has an infection, which she has. Its not higher, isn't that scary? It doesn't make a whole lot of sense to me. It makes me freak out a little more because of this. What if her heart is just stuck lower and won't really go a lot higher with infections? This would be so scary if we put her on TPN and she gets septic. The last few times Maggie has had her blood pressure taken it has been low. Not just on the low end. The alarms start beeping to tell us this isn't right. When she gets septic her blood pressure drops out. What if we put her on TPN and she gets septic? Things will be so much worse starting out low like that. We have minutes to save her life. I'm scared.

This is all I think about all day everyday. I never use to be like this. Am I losing hope? I don't know I can't say for sure, maybe its because I took a closer look and even though I am use to seeing Maggie like this she looks terrible. Why can't there be a clear cut answer on what to do? I hate hearing that there is no right or wrong at this point. I need to know what is right!

10/29/2010

2010-10-29T12:39:00.001-07:00

Maggie is growing two different bacterias from her trach culture. I will get the antibiotic so we can get started on it asap. We are going to treat one first and then the other. Lets pray Maggie can get through this infection without it affecting her too much. Her tummy is still not working so hopefully once this infection is being treated the tummy will perk up.

Thank you for all your prayers!!

10/28/2010

2010-10-29T10:43:00.000-07:00

So we had the appt with Maggie's doctor yesterday. This is the doctor that manages all of Maggie's stuff. Not a ped but like one for complex kids. Anyway we talked a lot about how Maggie has been doing these past few weeks. The first thing she said to us when she walked in the door is that Maggie was so skinny that she is critical and that since July Maggie has declined a lot. We know this and see this, we are use to it so its hard to hear someone say she is so critical. Her doctor said that this is just the path of the way mito kids go. They have a normal, they get sick, they decline and get a new normal or they just continue to spiral down. We obviously have a new normal with Maggie. We just aren't sure how long she will be at this new normal. In speaking with her doctor she agrees with us that this winter is going to be so tough on Maggie's little body. She is just so much weaker and just looks so much worse since July. She again brought up the Make-A-Wish and told us that as soon as they will let us do this we need to do it. She also wants us to really think about how we want things to be with Maggie as things continue to get worse. Its the things that no parent ever wants to think about let alone talk about and make plans for. I think Sean and I get confused because we just see Maggie still moving and doing things, yes she is very uncomfortable and grumpy and tired but she isn't just lifeless laying around to weak to move at all and not eating or doing anything. So its hard to think that her time is limited sometimes. And it makes it hard to discuss what we want for her when she is still telling us what she wants. The doctor just said that we need to be prepared for anything. We will be meeting with palliative care soon to talk more about this.

We discussed some more about Maggie's gut and the lack of movement. We mostly just sat there looking at each other with not much to say about this. We have tried everything and nobody can think of anything else to try. Its just so sad. We know the only other "option" is TPN but we also know that it really isn't an option according to us and her other doctors. We decided that we are going to have to be a little more aggressive with enemas, suppositories and her other laxatives.

We decided to get some x-rays of Maggies lungs to see what is going on. I received a call today from the doctor saying that Maggies lungs were really inflamed with her chronic lung disease and there was other things going on in that x-ray. It looks like pneumonia and she did a trach culture that shows she has some gram negative rods growing (this indicates infection). Not good, no wonder Maggie is just not getting better. We still have to wait to see what bacteria it is exactly so that we can treat it. So we will get a call tomorrow with whatever new antibiotic she will be on. I just see this as being a chronic problem because when Maggie was on the tobi (antibiotic) for a month she did well. As soon as she came off of it she was sick again with fevers and lots of secretions. Lets just pray Maggie doesn't start to lose anymore weight from this. She really doesn't have even an ounce that she could lose.

So this is where we are. Its heartbreaking and frustrating at the same time. We will continue to fight for Maggie and make her life the best it could possibly be. Hopefully things will stabilize after being on the antibiotic and we can have some fun things to post about. I would love for Maggie to enjoy some of these holidays coming up.

Thanks for checking in and for all the love and support!!

10/26/2010

2010-10-27T09:22:00.000-07:00

So quite a bit has been going on this past week. To start Maggie continues to fight some type of respiratory infection. We have discussed this with her doctor and have decided we will meet with her to have some blood tests, trach aspirate and x-ray done. Because she is still fighting this infection you can probably guess that things remain about the same with her gut. Every few days or so I think something starts to work in her tummy but then it just stops as quickly as it starts. As of now it is stopped. Her tummy is out so far she can't see her feet (not that she really has feet to see with her size 2 feet). She is in a lot of pain still. She really hasn't had a break from the pain. A little over a week ago I emailed her doctor about this and she called me and we talked about what to do. When we had our care conference with her doctors we were thinking of starting Maggie on Ativan at that time. Then right before we left that meeting we decided to wait to start it until we get a psych consult. Then we found out that we couldn't get in for 6 months. So then after Maggie being in so much pain for such a long time and just not able to relax, I talked to her doctor and that is when we decided to go ahead with the ativan. Ativan is supposed to help her calm down. So when I gave it to her I was not ready for what happened next. Maggie lost all control of her body. She could not walk and could barely keep her eyes open and her head up. To add to this she screamed for hours and hours. She would not stop. It was heartbreaking and at the same time I thought I was going to go crazy from the screaming. So from all of that we have decided we will never give this to her again. Maggie has a few other drugs that she reacts opposite to as well. All of our kids react the same to the meds that are suppose to calm someone down.

So anyway to add to the stress, over this past week Maggies skin color has turned a yellow color. This is another one of the reasons that we will be seeing her doctor tomorrow. Sean and Maggie ran into her doctor at the grocery store the other day. She looked at Maggie and agreed that her coloring is yellow and that she has some tests that she would like to do on Maggie. She does think that Maggie is just so sick with this respiratory infection that it could be causing other problems. I just think that Maggie's 16 1/2 pound body is tired. But I still think she is doing an amazing job fighting for things to maintain.

We had Maggie's cardiology appt today. So far it looks like things are about the same with her heart. This was not the final reading report but just what the cardiologist looking at the echo thought. So all of the other things in her heart have to still be measured. She also wanted Maggie to wear a holter monitor again so she is wearing this now. The cardiologist seemed very concerned about Maggie's coloring and the dark circles under her eyes. She was also concerned about Maggie's overall attitude. Which is what we have just gotten use to I guess. Mags is still really puffy also so we will continue to watch this. Anyway she still wants Maggie on a schedule of appts every three months. She also really wants Maggie getting the RSV shots again this year. Our pediatrician is working on this right now but the insurance companies don't like to pay for these really expensive shots once a child gets over the age of two. All of our doctors feel strongly that Maggie still needs these so hopefully the insurance company will get this. This will be the first year Maggie isn't going to be on the vent, even though we think she needs it we are still trying to figure this out. It is very complicated. So anyway without the vent she cannot open her lungs all the way so stuff gets in there and settles at the bottom which is very dangerous. This on top of not getting the RSV shots is very scary for the winter. Please pray she will get these shots. There is no way we can afford these without the insurance.

I guess that sums things up for this past week. I will post the outcome of tomorrows appt as soon as we get some things answered. So hopefully that will be tomorrow!! For now we will keep on going and keep trying to get Maggie as comfortable as we can!!! One thing we can look forward to is the Make-A-Wish!! The paperwork will start for this next week!! I'm so happy for Maggie! I also have some other fun things to post about like the fundraiser and a princess party our neighbors had for Maggie. I just need to get the pics from my sister to post these. Hopefully I can get those soon!! We have such amazing thoughtful neighbors! And my mom and sisters have been so helpful also!! My kids love them like crazy!!! Maggie constantly asks for them! Please pray this appt goes well tomorrow.

10/11/2010

2010-10-11T18:28:00.000-07:00

Well, first I will say sorry for the lack of updates. Maggie has been fighting a respiratory infection which affects everything else in her little body. We are praying it doesn't turn into pneumonia but we will not know for sure unless we do an x-ray. Our doctor wants us to stay far away from the hospital right now since there is a lot of sickness there at the moment. So she wants us to look for other signs of pneumonia. However Maggie doesn't usually get the other symptoms. Instead of getting a fever that doesn't go away she gets a fever that comes and goes which is what she is doing now. We could listen to her lungs to hear it but with Maggie we can never hear it because she doesn't inflate her lungs all the way. So really we have to guess. Its pretty frustrating. Everything else seems to be struggling as well. She has a lot of secretions and I mean a lot a lot. Her stomach is pretty much not digesting anything which it struggles with when she is not sick with a respiratory infection. She cannot poop unless I help her. Even with a lot of milk of mag and suppositories. She is in so much pain. I hate to see her like this. She is also bruising like crazy. I have no idea how she got these bruises and goose eggs but she has them. Right now she has a black eye with a goose egg that she woke up with from the other night. We have no idea how she got it. She also keeps retaining water. So her little face gets all puffy and her legs and feet will get all puffy. The poor kid has just been miserable. I hope she gets over this soon! Luckily this is not spreading to the rest of the family. Well, she probably got it from Taveon when he had croup in Atlanta but it stopped with Maggie. Taveon and Maggie have the crappy immune systems so that makes sense. Anyway that is what we have been up to this past week!

We took the kids to their pediatrician to go over the Atlanta stuff so we could get them set up with glucose meters. That is what they requested them to have done when we were in Atlanta. Right now I've just checked them a few times and Hailey sits on the low side so we will check her when she has symptoms more. Taveon is actually high, so I have been monitoring him more frequently. We will do this for a little bit and then give the results to the doctor to see if we need to continue monitoring or if we need to make changes. In the past we know that Maggie has been low so I haven't started to monitor her again even though I should have probably been continuing to monitor her anyway. I just feel so bad because she hates it and I can pretty much see when she is low. I might start checking her again symptomatically because the doctors said she is at high risk for diabetes. We will wait and see though.

Maggie has a cardiology appt next week so we will cross our fingers that everything looks okay there, or at least not worse than the last echo. Then we will also see if she will be transfered to the heart failure doctor. Which is what Atlanta would like us to do. So again we will wait and see what happens with all that.

Other than all of that things are moving quickly. It seems that the year has gone by so fast I can't believe it is already Halloween!! So we have been getting costumes ready and trying to find all of the fun things to do around this time of year!!! I like fall but actually have a love hate relationship with it because it is so pretty but it also brings us closer to the snow falling. Which I hate! I don't mind watching it or even visiting it but living in snow is no good!! I need to move somewhere warm year round.

I will keep you posted on how Maggie is doing!! I so am still going to post some pictures of the fundraiser when I get them from my sister.

Atlanta

2010-09-29T09:05:00.000-07:00

Okay so we had our appointment in Atlanta today. Things went okay I guess. We first talked about Maggie and what her future holds. We spoke with Maureen who works with Dr. Shoffner. She told us that Maggie's numbers in complexes I, III, IV, and V are significantly low. It doesn't look real great because of all of Maggie's severe symptoms. She said that they think we need to treat Maggie aggressively but cautiously. She said it will be tricky but that will be Maggie's only real chance. She thinks we need to treat Maggie as if she is in respiratory failure and cardiac failure even though she is not quite there yet. She said that the reason they do not want to treat Maggie with co enzyme q 10 ( I think that was the stuff) is because at this point they think it will do more harm than good. She thinks that if Maggie gets another cold or any other infections then that could just push her over the edge. She does agree with us that the TPN is really risky with her history of infections and sepsis she thinks that she wouldn't be able to fight through the first infection. This means that we still have to be really careful with how much we feed her since she doesn't digest well at all. The more food that sits in her stomach the higher chance of her getting a blood infection from the bacteria pushing out of her stomach wall and into her bloodstream. She has gotten infections like that without a line before so it is definitely a balancing act. She said that we a walking a thin line right now and she really doesn't know what will happen. She also thinks that we need to consider putting Maggie back on the vent and or trying some other things that we will talk to our pulmonologist about when we get home. She said that we could try to do this at the hospital where we live and they would be in close contact with our doctors or we could move and get closer watched over by there team. So I guess that shows us that we really have a lot to think about in getting Maggie properly cared for. We didn't mention anything about moving that was all her. Maureen also noticed Maggie's sensory issues and thinks that we really need to work on this because it is really bad. She had some good ideas of some things we could try with her. She was definitely concerned about it though. So back to occupational therapy!

So they haven't found the gene that is causing this yet and she said they have only ruled out one, out of all the genes out there. So we definitely have a ways to go. With that being said, we brought Hailey and Taveon with us since Dr. Shoffner was interested in Taveon. We went over all of their symptoms with Maureen and she checked them out and she definitely thinks that Taveon has mitochondrial disease also. She thinks that it could be a little different or not. She checked his muscle tone and she said that he was low tone and we went over everything else with his constant infections and major digestion problems, she also noticed a weakness in his tongue or mouth which is making him speak different because of the way he moves his tongue. There were a lot of other things we went over with him as well. She thinks that if he gets any worsening symptoms then we may need to do a muscle biopsy on him to see exactly what is affected. For now we will treat him as if he has mito. With Hailey she is not as sure with her but thinks that with her new symptoms she is having that she may also have some type of mito. I was surprised to hear her say this about Hailey because she is normally my healthy kid. Maureen just thought we should watch things closely to see if we see any type of progression. She also wants her to have a neuro-psych test done. Any progression would be a good indicator that she probably does have mito. For today they just had some blood and urine tests done on Hailey and Taveon. They want to do blood and urine on Maggie as well but she will send what she wants to our doctors back home to have it done there since Maggie is a much more complicated poke. I have to say that Hailey did an amazing job she didn't even flinch when they took her blood. Taveon on the other hand was quite opposite of that, but that's okay it's hard to give blood with a smile.

This appt was not quite what I was expecting. I guess I thought that these guys would tell us that Maggie wasn't that bad and that she would be okay. It's okay though, we can do this. Maggie is feisty and will keep fighting. Now we have a semi plan so when we get home we can start on that. Hopefully I didn't leave anything out but I usually do after a big day like today so I will try to throw in anything I missed into the next post. For now we have a couple more days here so we will be having a mini vacation at the zoo, aquarium, world of coke and whatever else we can find to do. Its been over three years since our last family vacation so this should be fun.

Thank for all of the thoughts and prayers! We also are so thankful for the fundraiser our neighbors did. I want to post more on that when I get some pics to post. It was amazing though and we can't believe how many people love Maggie.

9/17/2010

2010-09-17T06:37:00.000-07:00

Wow, what a crazy, hectic time we have had! We are definitely keeping busy. Maggie is doing okay for Maggie. She is silly and happy at times and very grumpy and irritable at others. We will see neurology next week so hopefully they will be able to go up on her meds for pain. She is still losing weight now down to about about 16lbs 7 oz. We are feeding her the same so it doesn't make a lot of sense. Her body is still just not working as well since her last lung infection. We just can't seem to find a new baseline for her. Its really sad to see her so thin especially when she bathes and has no clothes on. Even with her losing weight she seems to be getting a little more energy so that is a postive we have seen. She still can sleep most of the day some days but there are other days that she is playing a lot more and taking shorter naps. Her heart rate continues to be very low asleep or awake unless she is having discomfort but even that is low for her being in pain. Other than that not a whole lot more to update on.

We will be leaving for Atlanta a week from Saturday. My nerves are starting to get to me. I hate flying and I'm not sure how the appt with go. I know there isn't a whole lot that can be done for Maggie since this is how the disease goes. I just hope I can learn something from the appt. I'm sure I will.

Hailey has been loving school and her friends and other activities. We really just try to keep their lives as normal as we can with everything going on with Maggie. Hailey had her six year well check last week. We talked to the doctor about some symptoms she has picked up over the last few months. They seem to only be getting worse. Hailey is normally our healthy energetic child. By energetic I mean she wakes up anywhere from 6:00am to 6:30am and is go go going all day long. She is just happy all the time and hates to miss anything. The past few months we have noticed her being more tired wanting to lay on the couch (which is totally not Hailey) she has been dizzy and getting really bad headaches. She also will get really nauseated and throw up frequently. The poor kid can tell when she is starting to feel bad and will grab a bowl and just lay with it. She will wake up and go to bed feeling really sick. The first few times this would happen we thought she was getting sick but the more we saw it and watched her we could tell she wasn't sick with a virus or flu. There is something more going on. We decided with the doctor that we are going to start journaling things all the time to see if we can find out what is going on. He has some ideas on what he thinks it is but we will wait to share that until we see him again. Anyway hopefully it will be nothing but we will just wait, watch and see what happens.

Taveon is also loving pre-school. He loves going to play with the neighbors and thinks that everyone should always listen to him and do what he wants. Thank you to the neighborhood boys that will play with him and entertain him!! T still has been getting his regular ear infections. His ears are definitely infected more than they are clear. We can see when he has one and will just give him his ear drops and if that doesn't work then we bring him in for something stronger. I'm sure he has lost more hearing. We should be getting that checked soon. He still is getting croupy stuff and colds all the time. As I type this he is laying on the couch coughing, sniffing and just sounding way congested. Good times. He is still happy and a crazy little boy.

Hopefully everyone saw the cute video that my neighbor put on my blog. All of the pictures were taken by my sister Mindy and the video was put together by my neighbor Kelly. It is so beautiful and I love it! I think we've got to live in one of the best neighborhoods in the world. They are all so amazing to do this fundraiser. Thank you all so much!! I can't download pics on here for some reason sorry. If you want to look at my bog there are some on there.

There are a couple of friends that need a lot of prayers right now.( I hate suffering in children). If you could say some prayers for them we would appreciate it so much!!

Skyler http://www.crystalandskyler.blogspot.com/
Eithene http://www.fromthebanksofjordan.blogspot.com/

9/12/2010

2010-09-13T05:05:00.000-07:00

Here is a link to an amazing video that one of my neighbors made of Maggie for a fundraiser that our neighborhood is doing. We have some amazing neighbors!! Thank you so much to everyone who has done so much for us. And for all of the people donating time and things to this fundraiser. There are no words to say how much we appreciate this and are so grateful!! Thank you so so much!!

http://gallery.me.com/paintedpelican/100210

9/5/2010

2010-09-05T23:04:00.000-07:00

Just an update on how Maggie has been feeling this past week. Its kind of like a roller coaster lately. I don't like just talking about how much Maggie is declining, I wish she wasn't having so many problems. I'm going to try to make sure to hit all the good things that have been going on as well. Even though they may not seem huge there are still good things.

Maggie has been losing more weight she is currently 16 lbs 14 oz. This was a couple of days ago so who knows she could be less than that now. This past lung infection really has her struggling to hold on to her health. That and I think she may have another respiratory infection. She has been having on and off fevers and is coughing and sneezing a lot.

Despite continuing to lose weight, Maggie was actually in a better mood for a few days. I think a lot of that has to do with going up on her pain meds but, hey if its helping her enjoy her life then it makes me happy. She still continues to need a lot of sleep and if she doesn't get it we end up paying the price at some point. The other night we didn't have a nurse and for some reason Sean and I totally didn't wake up to give her the middle of the night pain med dose. The next day she was really irritable and grumpy. I felt so bad! That doesn't stop her though she will still do the things she wants even though she may be uncomfortable.

For those few days that she was feeling well, Maggie was really fun to do stuff with. She was super happy and really silly. She loves to make people laugh. We are really enjoying making family memories and trying to spend as much time together as we can.

Another thing that we have noticed is that Maggie's overall heart rate has been lower even while she is awake and moving around. We are hoping that this will just be a temporary thing and as soon as we can stabilize her weight it will go back to her "normal" which is still low.

We met again with Maggie's Palliative care team and it was really nice. They helped us understand a lot of what we are feeling. We will meet with them again either before we go to Atlanta or after or both if we want.

Atlanta is three weeks away and we are looking forward to going and getting more information about this disease. We know its not going to change whats happening to Maggie because its a progressive disease with no cure but we feel like we need to make sure we know everything we can about this disease. Also Sept 19th - 25th is Mitochondrial awareness week. To support Mitochondrial disease please become a hope member at UMDF.org to show your support! It's Free! You can also order things like pins, t-shirts, and more on the website to raise awareness and show your support!!

Thank you for keeping Maggie in your thoughts and prayers!! We appreciate everything so much!!

8/27/2010

2010-08-27T09:22:00.000-07:00

We met with Maggie's doctors yesterday and made a plan. The plan for now is that we are going to go up on Maggie's pain meds and then we are also going to get a psych eval done on her because we all think she has some OCD and anxiety. They are also thinking that she may have some Post traumatic stress as well, just from everything she has been through. We think that if we can get some of the pain and this other stuff under control then she may be a little happier. We all do not think it will be a good idea to start TPN at this time because one of the things Maggie is doing from anxiety or whatever is that she is trying to find places to pick at on her skin. So they are afraid she may try to pick the PICC line and get an infection. We wouldn't do a broviak yet until we see how she even responds to the TPN this time around. But we aren't even going to do this yet so we aren't really thinking too much about that now. If we can get things under control in these other areas we may revisit TPN again. All of the doctors at the meeting agreed that this was our decision and that there is no right or wrong answer. So for now we just want to make Maggie very comfortable. We obviously talked about how short Maggie's life will be, even though I don't like to talk about this. I like to try and stay hopeful but realistic. That is a really hard thing to do. No one knows for sure how long we will have with Maggie but the way that she declines with every little thing that happens in her body is not a good sign. With this past lung infection we have seen her get considerably weaker and can't walk but a few feet before she wants to be held. She wants to sleep most of the day now. She is also aspirating more we don't know how bad it is because we decided to wait on an x-ray. But she is definitely struggling a lot more with this. One of the very tough decisions that we had to make is whether to continue to let Maggie eat by mouth or not. This is such a hard decision because food is Maggie's life. She loves food more than anything and this is the only thing that makes her happy. But its tricky because its one of the things that puts her in the most pain too. It was really really hard for me to say lets keep letting her eat by mouth but I just know there would be nothing else left for her (in her eyes) that would keep her going. So for the time being we decided to let her eat. Now if we are able to help her with the food thing after the psych eval then we can revisit this and make a new plan. We think that food is something she wants because of an OCD thing or anxiety thing. I guess we will know soon.

Over all this was a very helpful meeting. It was really stressful because I just really don't like to think about all of this stuff and if I do think about it I would rather not talk about it out loud. Most of the time I sit in shock thinking that this can't be right or that she will bounce back. But there are some times where I know that this is just going to happen whether I want it to or not. I really hate all of this. I hate watching her deteriorate so quickly from one illness. One of the hardest parts is that she is so smart and I love interacting with her. I don't want to see her get worse in this area. Her little body is wasting away its obvious and we get comments on it. She's 26 months and weighs 17 pounds and losing everyday. But if you don't focus on just the weight then she looks okay. I mean her personality takes your mind off of all of that. You can look at Maggie at any time and you never know what she will do. Tickle us, make funny faces at us, try and grab our noses or maybe just plant a great big kiss on us. She can be in the grumpiest mood and I could look over at her after a fit or something and she will pull her cheeks out with her fingers and make a silly face at me. I think its suppose to be this way to help us know that she is going to be okay no matter what happens. She is so strong and is doing such a great job! I love this kid more than anything and hope she will always know that Sean and I truly did everything we could to give her the best, happiest, most comfortable life we could possibly give her. I look up to her so much. I think I probably would have given up already if I had to deal with what she deals with every day.

Our other kids amaze me just as much. They know a little bit about what is going on. Hailey knows or understands a little more than Taveon but they just love Maggie to pieces. They would do anything for her. They think she is the best. Hailey goes to school or the store or wherever and will tell people all about Maggie and everything she has been through in her little life. Hailey is proud to sport a Mitochondrial pin to support her sister and she remembers to put it on everyday. Man, how did I get such amazing kids? I have know idea but I do know that Sean and I know how lucky we are to have them all be a part of our family.

I just want to thank everyone for the support that is continued to be shown to our family. We can't even describe the feeling we feel to know so many people that love and pray for Maggie. Thank you all so much!! We will be headed to Atlanta at the end of the month just to learn more about whats going on in Maggie's little body. We will definitely update about that and I'm sure we will have more updates in the meantime.

8/23/2010

2010-08-27T09:21:00.001-07:00

Well we have a date for the care conference where we meet with a bunch of Maggie's doctors to discuss our options and hopefully become more at peace with whatever we decide to do. This is all going to take place on Thursday. We are still not leaning one way or another right now I think we are just hoping for a miracle at this point. Hoping that they will find another option.

So I just wanted to also clear up a question that I have been asked a lot lately. I've had a lot of people ask me that if her colonoscopy and endoscopy were normal then shouldn't that mean that everything should work in there? The answer to that is that things looked "normal" as in he didn't see another disease in there or another reason for her problems. These digestion problems are a result of the mitochondrial disease and her muscle weakness from this disease. So its just what we thought the problem was we just wanted to double check that there wasn't another problem going on that maybe would be fixable and that could help Maggie. Anyway sorry for the confusion on that. I know I sometimes just write what the doctors tell me and everyone else doesn't get all the side info. I apologize for that and I also thank everyone who has been asking questions because this can all be very confusing. I don't mind questions at all so please ask if you are unsure of what I write or you feel I've left something out.

As for Maggie right now. She continues to sleep most of the day, if we didn't wake her up she wouldn't wake up. When she is awake she is in a lot of pain. Her body is tense pretty much the entire time and she is struggling even more to go to the bathroom even with increased laxatives. She also continues to lose weight. It is breaking our hearts to see her this way. We pray that we will have the strength to make the best decision for Maggie this week or next (after we've had time to discuss things just the two of us.) Maggie is an amazing little girl and we can't believe the things she goes through and never gives up. She is truly inspiring and I hope I can be more like her. Thank you for the continued prayers.

8/16/2010

2010-08-16T18:02:00.000-07:00

So we are just waiting to do the care conference with all of Maggie's doctors until one of our doctors touches base with the doctor in Atlanta. We are still planning on going to Atlanta at the end of September but we just need to figure out what to do next with Maggie. We are basically picking Maggie's poison. We have to decide whether we start TPN and risk her getting an infection which she will get probably within two months or less. But she will definitely get the infection. Her heart will probably not be able to make it through a septic infection. Not only that, but if she does make it she will just continue getting infections and each one will be a bigger risk than the last. She will also lose places to access for central lines because each line will have to be pulled and replaced. We have tried not pulling her lines with infections and it doesn't work and just makes things worse. And then there is the damage to her liver that will take place from the TPN.

Our other option is to watch her starve to death and dragging it out because her muscles don't work which make her digesting food very difficult. This would also put more stress on her heart and it would eventually give out.

Either way I don't think I can make this decision. I feel like I can't knowingly give her TPN knowing what will happen. And I also don't feel like I could let her starve to death and do nothing knowing that her stomach can't digest food. We feel really stuck and her doctors do too. They said that they aren't exactly sure what to advise us on either. This is the toughest decision we will ever make. I really wish there was another option.

Anyway we are really worried about what her echo is going to show in October also. It seems these are the only things we can think about lately. We have been trying to do things to keep our mind off things. But no matter what we do all I can think about are these things. Maggie still continues to sleep more than her normal and would probably sleep all day if we let her. She has also been aspirating a lot more lately. We find chunks of food and suckers coming out of her trach. Who knows how much is going into her lungs. We will need to get a chest x-ray soon. Maggie seems to be more wobbly to. Every so often she will have a good day though and we love it when she is silly and cracking up. I guess that is probably it for now. When we get more info I will post more. Thank you for all of the support that has been shown to us. We really appreciate everything.

8/10/2010

2010-08-11T07:58:00.002-07:00

So not really sure how to update our cardiology appt today. It was really overwhelming and a little scary, okay really scary. But I'm glad the doctor just told us how it is. So for this appt our nurse Deb came with me and Maggie. Well, we started with having an echo done and I expected everything to be okay with that and it just showing her normal PFO. We went back to the room and had an EKG and waited for the cardiologist to come in to give us the results of the echo and EKG. So she finally came in and said that she had received the results of the biopsy and said she was going to talk to another cardiologist about what needs to happen next. So anyway then she continues to tell us that Maggie's echo was worse than her last echo and that looking at this shows that this is why her other organs are all having trouble. Maggie's septum in her heart is not working as well. She asked me how invasive we wanted to go with Maggie and I said that we don't want to be too invasive because of all of her problems the outcome would not be very good. But that we would need to discuss everything as things came along. She absolutely agreed with me and said that she would not do a transplant on Maggie and she would not do a pacemaker on Maggie because she does not think Maggie would make it through that process and because if she did make it she would have deteriorated a lot to have made it and her life would not be good. So then she tells us that what we want to hope happens is that when its time, Maggie gets an arrhythmia and that is how she goes because it will be painless. Not sure what to think about this. I think I may have been in a little shock at this point. She says that she is going to see Maggie one more time and then she will probably transfer her care over to the heart failure doctor. Maggie is not in heart failure yet but apparently that is where she is headed. She tells us that because of her heart this is part of what is causing Maggie to have trouble digesting. So basically there is nothing we can do about that. There are a few meds that we could try to help the heart but there is nothing we can do to fix the heart. However she doesn't think Maggie can take the meds for this because Maggie has such a low heart rate. These meds will make it slower and she will need to be watched super closely if this is what is decided to do. She says that we can not put Maggie back on TPN because not only of the liver problems but because she gets infections so easily. If her heart rate goes high like when she gets infections she said that this is when the arrhythmia will happen which will mean Maggie will not make it. So not only can we not have her heart rate low, now we have to watch so carefully that it doesn't go too high. So she said that there is really no way to get Maggie to keep her weight or gain really. Basically, she says that we are going to watch Maggie starve to death which will make her heart give out. Unless another doctor can come up with some other way to get her to digest or get her calories without a central line. So there is nothing we can do about it. It is so frustrating to know the plan of your childs death and not be able to do anything about it. I can't even explain the feeling I have or how to move on with daily things right now. My head is just spinning in circles trying to come up with something. The cardiologist asked us what we were going to do for Maggies Make a Wish and we told her we were planning to go to Disney World (Thanks Brienn I am seriously going to email you soon I'm just spacey) the cardiologist thought that this would be great for Maggie but then asks us when we are going and we told her that Maggie has to be 2 1/2 to 3 to have a wish and her response was "push to get it done sooner!" We told her that we had tried to talk to someone about doing that and they said we couldn't and she said yes we can and that we need to push it get it sooner. I guess she doesn't think Maggie's quality of life will be good at all in December so she wants us to do this trip as soon as we can.

So, so far all of Maggie's doctors that we have seen agree that we need to make Maggie as comfortable as we can so she is not suffering. Its so hard for people to understand that although Maggie looks okay on the outside her insides are not well. She has lost weight and is not looking quite as good now and we are going to continue to see this. Maggie is way small for a two year old. On our scale at home Maggie is under 18 lbs, she is going to be 26 months next week and she is starting to lose weight quicker than she has been. We have made a followup appt with Dr Shoffner in Atlanta for the end of September. Our cardiologist wants us to see if he has any other ideas on what we can do to get calories in her since he also does not want her on TPN. I am praying that he can think of something and fast.

Maggie will be having the colonoscopy and endoscopy to make sure things look okay from that standpoint. This will be on Thursday, which she will also have some blood tests done and urine tests done. These things will check organ function. Being sedated is very scary for people with mitochondrial disease so please pray things go well with this. Please also just keep Maggie in your thoughts and prayers for this news that we have received today. We appreciate all of the love and support and being surrounded by such amazing people. Our neighbors all pitched in and got us a Flip camera so we can record everything. We are so thankful for this and can't even describe how amazing everyone has been. Also thank you to our nurse for coming with me to that appt, I don't think either one of us were expecting to hear what we did. Thank you all so much!!

8/5/2010

2010-08-11T07:58:00.001-07:00

So I will start by talking about the birthday we just celebrated! Hailey just turned six!! All she wanted for her birthday was to lose a tooth. She hasn't lost any yet. So that didn't happen but today she finally lost one. She is so excited!! We are thrilled to be able to celebrate her sixth birthday. Hailey is such a great big helper and a great big sister to Taveon and Maggie. She is smart and is always eager to learn something new. Hailey is one of the most thoughtful kids I have ever met. She is always concerned that other kids get the same opportunities as her. She has the biggest heart I have ever seen! Hailey loves to play make believe and has a fantastic imagination. I love watching her play. She is also a great reader and she loves that she can read small chapter books. She is so excited to start first grade and so are we, with maybe a little sadness mixed in because she is growing up so fast. We love you Hailey and we feel so lucky to have you in our family!!

Now for the update on Maggie. Things aren't going so well with little miss Maggie. Her stomach has shut down and nothing is going through. She has lost almost a pound now and she just looks like she is wasting. She didn't have a pound to lose and things are continuing on this path. Her bowels are not working either even when we upped her dose of laxatives. She continues to play around with low grade fevers. While we are hoping they do not jump up high because that would most likely mean she has a blood infection caused by bacteria being pushed from her stomach into the bloodstream. We have been in constant contact with her doctor and nothing can be done until we get the endoscopy and colonoscopy. Luckily those will be done a week from today. She will have both of those things done along with some metabolic testing and some other organ function testing. She will also have more biopsies done in the colon, stomach and intestines. From there we will see what we need to do for Maggie. She has been really uncomfortable and irritable and is sleeping a lot. We are really worried about her but the doctors don't know what to do. I just wish for once that someone knew what to do with Maggie. On Tuesday Maggie has an appt with cardiology so we can get the results from the monitor she wore for two weeks. She will also have an echo done as well. Luckily our nurse will be coming with us to this appt and so maybe we can get something figured out with that. Maggie will also be seeing the Palliative care team. This is a team of nurses and doctors that will help us make decisions for Maggie and make her as comfortable as we can. Anyway this has been taking up all our time trying to figure things out with Maggie and make her comfortable.

Other appts we will have in the near future will be ophthalmology and getting her hearing checked.

We will update with any changes but hopefully it will be good changes. Thank you for the continued support we really appreciate it so much!

7/23/2010

2010-07-26T06:50:00.000-07:00

Sorry for the lack of posts these last couple of weeks have been a little draining with everything going on.

Maggie has been sick. Not feeling so well at all. We took her to her pulmonology appt on Wednesday and she was sick when we went. We have a new pulmonologist now because ours moved. I think we have been lucky because we loved our last one and we really like this new one so far. He seems to know a bit about mito so its nice to talk to someone that can give Maggie the best care with her disease. Anyway he did the normal stuff and when he listened to her lungs he said her left one didn't sound so great. Not really surprised. He was very thorough and he is one of the only doctors that actually read over her history before we got there. He knew a lot about what illnesses she has already had and what in general has been going on. He ordered a trach culture do to her increased secretions. He also ordered a lung x-ray. We went to get the x-ray and headed back to her room to get her oxygen checked. Her oxygen was in the mid to low 70's. We waited a little bit and suctioned her really well and changed her nose out and rechecked her. She hit 90 for a second but immediately dropped down into the mid to low 80's and stayed there. Then we waited for the doctor to come and tells us what her x-ray said. He put her last x-ray up next to the one we just took. They looked horrible this time. She has chronic lung disease so they always look not so great but this time they were really terrible. Her left lung especially was just very under inflated and full of junk. Normally we can see dark streaks in the lung which would indicated the good part but there was nothing but what look like a thick white cloud. Her right lung was really under inflated to but we could see at least a little bit of dark streaks. Anyway the conclusion is she has a lung infection and he doesn't think that its just any lung infection that could easily be caught or spread he thinks what happened is that she has allergies and he thinks that because she is not on the ventilator anymore at night then her lungs have a hard time with the secretions from the allergies and that the bacteria that sits in a trach for all trach patients helped create an infection. So what do we do about that? Well, it's not great news. Basically he said that if she continues to not be able to inflate her lungs and if she continues to get lung infections especially in the summertime then we will have to put her back on the vent. Even though her blood and sleep study say that she is over ventilated he said that her body is telling us that she needs it by looking at her lungs and her lack of energy since being off. So we have to decide what is less harmful to her, or what is putting her at higher risk. Which ever way you want to look at it and it would be better for her to be back on the vent if she continues on like this. So for now we are going to be doing chest CPT on her to loosen the secretions and wait for the trach culture to see what we need to do to treat it. He thinks he is going to put her on tobi though, which is a breathing treatment.

So before Maggie got sick our other doctor ordered her to have a pulse ox recording done. So we got one of those little recording ones dropped off and kept it over night and gave it back. Basically we did this to see if we can lower her oxygen. We did the recording using just a half liter instead of the normal 2 liters that we have her on. Well we got the results of that and they weren't very good and she wasn't even sick yet! So we for now are back up to 2 liters. After her sickness we are going to bump her down to 1 liter and see how she does. I'm crossing my fingers she does well. These things are just not going the way we had hoped.

Another thing we are having to figure out with Maggie is that the other day we were outside playing and Sean, Taveon and Maggie were running around chasing each other. Mags sat down and Sean was going after her. She has terrible balance and coordination so she ended up falling back and hitting her head. I don't think she hit it very hard because there was barely even a mark there. It was strange. I picked her up and went to sit on the grass with her. I looked at her head and then turned her around and looked at her face in shock. Her face was whiter than white and her lips were completely blue. Now this also happened before she got sick. She was acting totally normal. She was breathing fine and she didn't really go on and on crying. Anyway because she was acting totally normal Sean and I were not sure what to do. We just kept looking at Maggie and then looking at each other horrified. We started to give her some water and something to eat. It took a little bit but the blue finally went away and she just stayed really pale for a long time. There were people around us just staring at her. I just didn't really know what to do, I checked to make sure she was breathing and she was totally fine there. We brought her home and contacted her doctor. She said that it sounds like her heart rate dropped really low from what I described. We told pulmonology and he said the same thing. So now we just need to see cardiology, which we do on August 10th. I'm probably going to have a full head of gray hair from this little girl.

Now don't get me wrong we have had some fun times too. Maggie and I got to go to a baby shower for a fellow blogger. She has a little boy that is adorable that has down syndrome. He has had some complications along his journey. Anyway Lacey (his mom) has four boys all together and now she is adopting a baby girl with down syndrome! We are so excited for her!! It was so fun to meet her and meet a bunch of other kiddos and moms too! We have gotten Maggie a little pool that she can play in, even though it totally freaks me out even with it just a little bit filled. She is so unbalanced and she almost fell a bunch of times. I mean on her face and I caught her arm barely every time. I have to have one hand on her every second but she is so tiny and when she gets wet her little hands just slip out of mine. Or rather she yanks it out because she hates me to hold onto her. She wants to be a big girl. Anyway with her trach the outcome would be aweful if she fell. Other than that we have just been having fun at the zoo, aquarium and wherever else we make it to.

I want to thank everyone for the continued support and the nice comments. We are so thankful for everyone that has loved our family and especially Maggie. Please pray that she can fight this lung infection. With mito kids things can get complicated and we are seeing her get weaker so we need prayers to make this infection go away.

Diagnosis - 7/9/2010

2010-07-09T22:09:00.000-07:00

We finally got the report back from Atlanta. This is just going to be a quick update. I will go into more detail later but for now I will just put the diagnosis.

Maggie has mitochondrial disease. Complexes affected are 1, 3, 4 and 5. They also think she may have a neuromuscular disease.

If you would like to do more research you can go to www.umdf.org you can go to "types of mitochondrial disease" and also "what is mitochondrial disease?" for more info. This is a progressive disease and because Maggie was so young when she was affected by it and she has severe symptoms and so many organs already affected we are told that her prognosis is not good. However no one knows for sure how things will turn out and so we HOPE and PRAY for a miracle.

Please keep Maggie in your prayers. We appreciate all of the love and support that we have received through everything that we have gone through to get her diagnosed and even though it is not a good diagnosis, we have a diagnosis and can start giving Maggie the life she deserves to have. Thank you all so very much!!

7/7/2010

2010-07-09T17:50:00.001-07:00

Yes I know I haven't updated in a little while. So we still don't have results back from Atlanta yet. We are hoping it will be soon though.

We had a GI appt and it was not especially helpful. When they weighed Maggie they couldn't believe how small she was and they wanted to weigh her again. The Doctor was focused on one thing and that was getting her to grow bigger. Since he is a new doctor he didn't know what we have already tried for Maggie and apparently he didn't read her history because he just wanted to do everything that we have already tried. We explained to him how feeding her on a slow drip through the night will not work. Her stomach completely shuts down most nights and even through some of the day. Anyway we thought we would make him feel better and try again. Maggie was miserable and has pretty much been in pain and really uncomfortable ever since. We have since stopped this and he couldn't believe the problems she had. Our nurse went with me and Maggie to the doctor and then she called him and explained the situation when feeding her through the night. He told us to do what we could and he also tried to suggest other things that we have already done. We are obviously not going to go back and do everything we already know doesn't work. So he wants to do another endoscopy and a partial colonoscopy. We will have to see if these show anything. Then we will go from there. I will be contacting the Dr in Atlanta about her feeding because when we were there he said that as long as she maintained weight we shouldn't try to force her to gain more. This is because she is already eating so much that he thinks she should be fine. If she didn't eat constantly then that would be a different story. What can I say, our kids love to eat!

Maggie continues to have lower heart rates than her usual low heart rates. So our nurse called the cardiologist and they agreed to get us a monitor that will record for two weeks. It is a total pain and not toddler friendly but I'm glad we have it. We will have to see what comes of this. Since up until we got the monitor she had heart rates in the 20's and 30's multiple times and so far she hasn't gone down like that again, just her normal low of hanging out in the 50's. That's typical of how things work around here. I'm sure once we give the monitor back she will be back in the 20's again.

Thanks to our nurse we have been able to get some of this stuff rolling. I get so frustrated with these doctors not listening to me or not understanding what is exactly going on with her. So thank you Deb for coming with me to appts and calling doctors for me!!

We have been working on symbols or whatever they are called for speech therapy. Its to help her when she gets the communication bored. Basically she has to point to the different things. When she gets the bored she will push a button. She needs to know to point to "I want" and then like a "drink" or whatever it is that she wants or if she doesn't want it then the "I don't want". So she needs to know the difference before she will actually get the communication bored. We'll see how she does with that.

Since its been a while since I've updated I have probably forgotten something. If there is something I didn't cover then just leave a comment with the question you have. The pics are just of things we have done recently. There are a lot so I will post some now and more later. Thank you for thinking about Maggie and checking in. We hope to get these results soon so we can see what we need to do from there.

6/24/2010

2010-06-24T05:14:00.001-07:00

Well I have just a couple of minutes to do a quick update while Maggie is sleeping.
Things seem to be about the same. We are still waiting for results which I am not surprised by. Tomorrow will be 9 weeks. I'm sure it will be sometime next week.
In other news Maggies GI appt that was scheduled in August got bumped up to this Monday!! I am so happy that our doctor was able to help us get in to see him sooner. Maggie has some major GI problems so I can't wait to see if this guy can help. Even though I am looking forward to getting her in. I have a feeling that the outcome is not going to be what we want. Her bowels and intestines are not doing very well. And as usual her motility continues to be a major problem.
Maggies eczema is just spreading all over her. No matter what we do it just doesn't seem to get any better. Last time I had posted about this, we had a few people give some ideas however, we had tried all of those so if anyone knows of anything else we are open to trying something else. We have tried a lot though so I don't really know if there is a whole lot more that we could try. All of our kids have eczema and actually Hailey has it the worst normally but as long as she uses aquaphor she is okay. That stuff works on her even better than prescriptions do. But now Maggies is getting terrible and nothing is working. It is just spreading everywhere.
Now for the thing that makes me so nervous. Maggies heart rate has been crazy. The other night it was just terrible. She was in the twenties and thirties more than she has ever been. Her rhythm was all over the place and it was just super scary. Our nurse just kept moving her all over trying to keep her heart rate up. The next day she took a nap and she would not wear the monitor. She was just freaking out. So I let her just sleep without it. I walked a little closer to check on her and noticed that she was a dusky color all over her face. From the middle of her face up it actually was like a darker purple bluish color. So I moved her a little and she moved and then just like that color started coming back into her face. It was really scary. I had emailed her doctor and basically they don't really have a lot that they can do until we hear back from Atlanta. So our nurse is going to try and call the cardiologist and talk to her about it. That night was the worst night that she has had with her heart. I can't even explain the way her rhythm was. There were beats that were so close together one right after another and then big long pauses. And it was just crazy all over the place. That same night later in the night her nurse told me that Maggie woke up and was just giggling. She has no idea what was so funny but she just kept breaking out laughing. I thought that was interesting. But got to experience that for myself in the morning. Maggie just kept laughing at everything. It was like someone told her the best joke and we weren't in on it. It was such a strange night and day. I can't wait to get these results so we can maybe get some answers.
Maggie had a great birthday!! I will post more on that and get some pictures up as well. She was a little off that day but she was beautiful and loved by a lot of people. Thank you to everyone for the birthday wishes to Maggie! They were so nice! I hope to update again soon with hopefully some results in the next update!

6/18/2010

2010-06-24T05:13:00.000-07:00

Maggie is 2 today!!!!! I am so excited to be able to celebrate her second birthday!!! We are so happy to have Maggie in our family!
Here is just a little catch up on the past week. Maggie has been GRUMPY! She pretty much cries nonstop. She is obviously uncomfortable but I can't tell where its coming from. She has looked a little puffy the past few days also. We are just keeping our eye on her for any other changes. Since she looks good on the outside and its her organs on the inside that have been giving us trouble, its hard to say what is happening in there. We are waiting to hear back from one of her doctors who is helping us get into see GI faster. Maggie is still having so much trouble with all of that stuff not coming out so easily when its like water. And then also with her overall motility or lack thereof. We also have not received the results from her biopsy yet. We pretty much knew we wouldn't get them by now but I was still hopeful. As soon as we hear anything I will post.
Now how Maggie has changed over the year!!Maggie is a little bigger because of the TPN she was on. As soon as that stopped she stopped growing. She is still a couple pounds shy of 20 pounds. She eats like crazy so we don't think that this will change unless she gets back on TPN, but we don't see this in the near future hopefully. Mags is about 30 inches tall right now!! She looks good compared to this time last year!! This past year she learned how to sit up, roll over, scoot on her bum, and walk!! She is walking all over but her balance is aweful! She gets super tired and if she does a lot one day the next day she could sleep all day. Maggies organs seem to all be having trouble:( Her liver enzymes are high, however she has not hit the mark for hepatitis yet so that is good but it does continue to get worse every time they check it. The kidneys are also having some trouble so she will be having a full kidney function test. Her heart is still having trouble. Unless she is not feeling well then her rate seems to be better but otherwise she spends a lot of time in the 50's. And then there is the stomach and intestines. Those things just don't work very well. Maggie has gotten off the ventilator!! Its so great! We do have to hang onto it until we get results but we aren't using it! However now she is on 2 liters of oxygen. So we are going to see if we can move down on that a little. Maggie has turned into a feisty little girl! She can hold her own against her much bigger older brother. She is signing like a champ! She knows so many signs I lost track of how many she knows. I think she learns so quickly because this is her only way to communicate and she gets very frustrated with us if we don't know what she is trying to tell us. She is so super smart! There is probably a lot more that I am missing but I am going to end here because my Birthday girl just woke up so I am going to spend some time with her. I will post some pictures later!!
Happy Birthday Mags!! We love you so much!!

6/5/2010

2010-06-07T10:18:00.002-07:00

So we did hear back just a tiny bit of info from Atlanta yesterday. We still don't know what this all means but nonetheless its still info. They called to tell us that one of the tests they were going to run was rejected. They waited for her cells to grow (which should happen whether good or bad cells) but nothing happened. The person I talked to could not give anymore info other than that. So this of course starts our minds spinning trying to figure out why and what this means. We won't know more unfortunately until we receive the final report. So we wait. Its been 6 weeks now so who knows it could be any day now.

We have been trying to keep busy and enjoy the weather. So far I think we have done a good job of doing that. We have had some stomach bugs but we still try to get outside even if its just sitting on the porch.

A couple of days ago Maggie, Hailey and Taveon were sitting on the porch waiting for Hailey's ride to school (yes she still has two days left, I can't wait) anyway, I had the front door open watching them while I was inside. Well I turned to do something for not long at all and when I turned around Hailey's ride was there and Maggie had gotten so excited waving at them she was dancing her little feet and waving so hard she lost her balance and fell on the porch step. The weird thing is that she had no other scrapes or bruising anywhere. I brought her inside to check her out. and the only place she hit was just her teeth. BUMMER! I was so sad for her she chipped both of the front top teeth. We brought her to the hospital where they have a dentist that works with special needs kids and he checked her out and said they were loose too. So before we made any plans on what to do next he and we thought it would be a good idea to just watch them for the next week or two and see what happens. If the nerves die then he will need to do little root canals on them so she doesn't get an infection and she could also lose them. I so hope she doesn't need any of that. This poor kid has been through enough. I'm so upset that I wasn't right there with her. After telling people about what happened it seems that this type of thing happens a lot. Either way that still doesn't make me feel any better about it. Although as usual Maggie isn't fazed by it and she is her normal happy, tantrum throwing self.

Other than all of that we are not doing too much with doctors still. The feeling is mutual that we all feel we would like results from this doctor before we do anything drastic. Maggie continues to have stomach problems and I'm assuming kidney and liver problems since her urine is very concentrated no matter how much fluids she gets and liver because her stool seems to be getting lighter and lighter. Oh and her heart is still doing the same things as well. One other thing we will have checked either before or after the results is probably her vision. It seems that her depth perception could be off a little. When she goes to pick stuff up she will miss and reach for right next to it. She does this all day long. Or if she is walking she will try to step over something and end up falling from stepping on it. If there is something bigger in the way she will try to walk around it and ends up walking right into it. They said it could either be her vision or it could be that she has black spots in her peripheral vision which would be a neurological thing. We will see.

We appreciate all of the thoughts and prayers for Maggie. Thank you so much for all of the support everyone has shown. We feel so grateful for all of the people that care so much about Maggie.

5/28/2010

2010-06-07T10:18:00.001-07:00

No, sorry, still no results.

We did have a couple of appts the last couple of days. For ortho he said that her hips look a little better. Not quite where he would like them to be but a little better. He said she needs to walk a lot. He joked and said that in order to get her hips where they need to be she needs to go on an 8 mile hike everyday. Even though we all know Maggie is walking as much as she can tolerate right now. He does not want to do anything at this time as far as a hip brace again but he said that he can't discharge her as a patient because they aren't that great. He also said that the hyperextension that she does isn't great but they won't do any interventions until she is three. Other than leg braces that is. And as you may remember Maggie isn't strong enough to walk with braces and shoes on. So he said to just do our best with her for now. We will follow up on her hips and hope that they get better.

Maggie has taken off with her signs. She wants to learn all of them and she is just getting so smart with pointing out things from a few cards. So our speech pathologist thinks that Maggie is ready for a speaking device. I can't remember the other word for it but basically a device that will help her tell us what she wants so she doesn't get so frustrated when she doesn't know the sign for something. We are very excited! We will also be working more with her PMV since she has started to tolerate it for a little bit of time. However she still struggles making a strong sound with it. We will work on this in the mean time. We are really looking forward to being able to communicate better with her. I am just so proud of her and amazed at the things that she knows.

5/24/2010

2010-05-27T09:00:00.000-07:00

Well on Thursday it will be 5 weeks that we have been waiting for results. Although we are getting closer I feel so much anxiety waiting for them. With the other biopsy that she had I didn't feel quite like this. I was more patient. I really hate feeling like this but I guess its because if we don't get answers then I feel like we will never know what is going on with her. Even though Sean and I feel like we will get answers from this doctor that always sits in the back of my head. And if we do get answers, which I know we have wanted to get for so long, I don't know if I am ready to hear them. I just can't seem to stop thinking about everything. Our estimated time that we have left is 1 to 3 weeks, according to what the doctor told me. However in researching other patients of his I see that it is more like 10 weeks that they are waiting for results so that would leave us with 5 more weeks. I don't know how I will be able to wait but I know I will. We have been trying to keep busy and do fun things. Although a lot of our time has been spent being sick. Which does not help the time go by fast.

Hailey ended up getting another sinus infection. And shortly after that Taveon started to cough so to be safe we took them to the doctor. Hailey had a really horrible sinus infection. She was put on Augmentin for 14 days. They didn't want to do anything with Taveon at that time. So we went home and waited. Two days later we took Taveon back because he was continuing to get worse. He ended up having both ears infected, both eyes infected and a really horrible sinus infection. He got put on a stronger antibiotic that I can't remember the name of for 10 days. A week and a half later he still has ear infections. We will be bringing him back to get the shots. I then got this horrible sinus infection and went to the doctor and they didn't want to put me on anything. The doctors do not think that we are contagious anymore. I still just have a cough and the Hailey and Taveon seem to be doing much better other than his ears. Maggie seems to be holding up pretty well and I don't know that she got any of it. We tried to keep our distance from her and wash our hands a lot. She did get a runny nose and more secretions but that's about it. And of course Sean holds up great through this and doesn't get it. Good thing there is one person that can stay well.

We will be keeping a close eye on Maggie though. Over the past couple of weeks Maggie has been sleeping a lot more and seems to still be having balance issues. She has also started crawling more instead of walking. This is weird because she never went through crawling before just scooting on her bum. Its basically happening when she is sitting on the floor instead of trying to get up she will just crawl over to something else. Its just weird and different for her. Maggies stomach has also pretty much stopped working at night. So we have had to stop night feedings. We will just continue to watch these things closely.

Maggie had a cardiology appt last week. She wore a holter monitor again as well. The cardiologist just really wants us to send her the results as soon as we get them. She said that if Maggie gets diagnosed with something Mitochondrial then she wants to transfer Maggies care to another cardiologist that specializes in cardiomyopathies. I guess because of the things that Maggies heart is doing in addition to a mito diagnosis puts her at a lot higher risk for developing a cardiomyopathy.

So we wait. We appreciate everyone keeping Maggie in their thoughts and prayers. As soon as we hear anything I will post it. Maggie also has an orthopedic appt on Friday so hopefully that goes well. Oh and other exciting news, Maggie turns two in less than a month. We are so excited!!

5/9/2010

2010-05-27T08:59:00.000-07:00

Sorry it’s been so long between updates. May has been a crazy month.

Taveon had a pulmonology appointment a little bit ago. It went good we actually first started by talking about how Maggie is doing and how the Atlanta stuff went. We explained how she DSATs here and there and it can take her a little bit of time to recover. He wasn't really happy about that so he wants her on at least 2 liters of oxygen while sleeping. He actually wanted her up to 5 liters but our concentrator is a pediatric one so it only goes up to 2 liters. I really don't think she needs to be on 5 anyway. He also talked about her liver and is a little concerned about it so we will be talking to some other doctors about this per his request. I think that was about it for her. We talked about some other things with her but nothing else that we are changing for now.

Now for Taveon, the doctor is very concerned about his airway. It is very swollen and just does not look good. He ordered some genetic testing for him and we should have some results in a few weeks. I can't remember the exact thing he was looking for but when I find out I can post what it was. He listened to Taveons lungs and he sounded good this time so that is good. He still wants him to use his flovent and albuterol. He got a chest x-ray and they will call us with the results of that. We talked a lot about Taveon and his airway and how concerning it is and we also talked a lot about how he gets so many cramps or something that I think are cramps in his legs. He is always complaining and crying that they hurt. He also cries about his back hurting all the time too. One thing we decided to look into is to take better notes of when these things are hurting to see if it’s his muscles and that they are just really tired. So we will be looking more into that as well. The doctor thinks that Taveon could really have the same disorder as Maggie but just a milder form. Taveon was a pretty small little guy as a baby and his nick name was noodle because he really just flopped around everywhere. He also has a lot of GI issues as well. So I guess maybe we will get to the bottom of this for both of them. That would be nice.

Maggie is still going to be having her kidneys checked and maybe look at a couple of different things to see what is going on there.

Everyone here got a little sick. I think we are feeling better for the most part. Maggie has been having a lot of trouble with her left leg. When she goes to take a step, that leg will collapse. Not every time but a lot. For physical therapy we went for a walk outside to see what her endurance is and how she does on different surfaces. She did okay, considering her left leg problem. She walked a little ways and was doing okay and then her legs would start to shake and then they were hyper extending. They always will hyperextend but they were pretty much stuck like that. Her legs looked like jello. She always walks like she is drunk but she couldn't even stay on her feet. Poor kid she just wanted to chase after Hailey and Taveon so bad. We got her wheelchair, not bad, it only took two months. She loves it! Her strollers don't let her sit so straight and forward so she doesn't really like to sit in them. But this lets her be out there with the kids and sit up like a big kid and she really loves it. Now I've just got to keep practicing putting the seat on the base. Anyone that knows me knows that I am not the strongest person. I don't have a lot of strength in my hands so it is tricky for me to put the seat on. If anyone out there that has this same chair has any tricks for me I would love to hear it. Some of the attachments we got with ours are a bag to hold some thing, an IV pole so we can put her feeding bag on that or if she gets back on TPN then we can hang that on it as well. We got the vent attachment which is attached to a tray thing so we can put the suction in and we got the tray so Maggie can eat or color on it. I think that might be it but I can't remember. I'll have to take some pictures of it.

Thank you for everyone keeping Maggie in your thoughts and prayers as we wait for these results. I will post things as they come. As for appts we will keep what we have but will not add anymore until we get the results back. And a Happy Mother’s Day to all of the great Moms out there!!

4/23/2010

2010-05-04T11:28:00.000-07:00

Well we got to Atlanta. It wasn't too bad of a trip, it's just really hard to travel with a kid that needs so much equipment. And then there is the fact that the people that work for the airline did not communicate about us needing to have her portable oxygen concentrator on the plane with her. However everything worked out so hopefully traveling home will be better.

The first night went well and Maggie slept like a log. She did DSAT some but she has been doing that since she has been off of the vent. I will talk to her pulm doctor on tuesday about it. Oh, and her liver results came back and they were a little worse than her ones in Feb. so they are trending in the wrong direction but they are just going to keep an eye on them for now. Maggie will also have a kidney test when she comes back from Atlanta. Anyway the next morning Maggie went for her resting metabolic rate test. She did great. I have some pics that I will post a little later but basically she had to sit on me with this big clear bubble over her head. I did not think she was going to do it, but she didn't cry once. I just ended up singing to her the entire time. We don't know the results of that yet but it seemed like Maggie probably didn't score to well on that because the girl that did it was watching it on the computer and kept checking on Maggie like something was wrong but everything was hooked up right so who knows. I glanced at the part that was left on the computer when she was done and Maggies line wasn't very close to the main line that shows what is normal.

After that test we had to head over to another hospital. There was some confusion on where Maggie was going to have the surgery because she was set up at one hospital to have it there and then I guess nobody told them that Maggie has a trach so when they found out they had to switch it to another hospital. It was a little stressful because we didn't know if that hospital would have room in the OR for Maggie on such short notice. Luckily everything worked out after talking to them about Maggie for a few hours.

Right after that it was time for our appt with the doctor. It was an interesting appt. He didn't say as much as I thought he might. He seemed very smart and seemed to know a lot about what he did talk about. Apparently on Maggies spinal tap from last year her results were borderline and our hospital told us they were normal. This doctor said he would not consider these normal results because as we age the number decreases and so Maggies is probably worse now. So he is going to recheck that when he did the biopsy he did the spinal tap also. He said that while looking at Maggies medical records he can see how many calories they have given her and it should be plenty. He said that this shows that there is something wrong with that part of her. He said that he would not recommend putting Maggie back on TPN at this time as long as she can maintain her weight. He thinks that the liver problems she has and the infections that she gets with central lines are too risky at this time. Basically she is going to be a small kid. Short and thin. He said we should have the results in 6 to 8 weeks and that he would like to have a follow up appt with us. We will have to see about that because it is so expensive. I would like to do that if we can find a way. Anyway while talking to him I had the impression that he might know what he thinks she has but he did not say anything. Its just a feeling I had. He also said that he not only specializes in mito disorders but in rare diseases as well. I knew this already and that is the reason why we chose to make an appt with him. I really feel like if he can't figure it out then nobody will be able to. We don't have results yet but I would totally recommend anyone that might be having trouble getting a diagnosis see this doctor. There was more to our conversation and he just totally knows what he is looking at and I think can figure out things that other doctors can't. Oh and another great thing is that he wants us to send him Taveons test results from when he sees the immune specialist. He said he would let us know what he thinks is going on with him as well. I think that is so great that he would do that.

Over all it was a great experience. I'm glad we decided to see him. I will post some pics soon. Thank you for everyone that supported us through this and Thank you to all of the friends and family that helped us with our kids and everything else.

4/16/2010

2010-04-16T15:52:00.002-07:00

Well we received good news and bad news over the last couple of days. Maggie saw pulmonology on Tuesday and while there we added a couple of different meds for her allergies. We also talked about where she needs to be with the ventilator so we were going to have a sleep study. Luckily someone canceled and we were able to get in that night. That never happens. So we did the sleep study without the vent. I got a call yesterday (Thursday) from the pulm/sleep doctor. He told me that we could do a trial off the vent for a couple of weeks. I was really excited. But then he tells me that the reason he is letting us do this is because Maggie is way over ventilated. I mean at times really really over ventilated and that is while not on the vent. So he says that a little part of it could be her asthma but the big part of it he thinks is something else. So he looked up her labs from Feb and her liver function wasn't where it should be so he thinks that it may even be worse now. He thinks that her liver problems are causing her to have ventilation problems. So now we have to go in and have more liver labs drawn. If her liver functions are bad then these problems will only get worse. Somehow we have to try and stop her liver from declining.

On Wed. Maggie got a high fever and since we are going to Atlanta we needed to figure out really quick what was going on so that it doesn't push this trip back. We took her to the ER and they could not figure out what was wrong. Everything came back normal. Everything except her urine. She did not have an infection but she had a lot of stuff in her urine. They did not think that this is what is causing her fever but rather something we found by looking for the cause of the fever. So now they want Maggie to have her kidneys tested because they think her kidneys are not functioning properly. So yes in this post we have added two organs that are not functioning the way they should. This is on top of her stomach and intestines. So now I really just want to get to Atlanta to see if this doctor can give us some answers.

Now on to Taveon. I discussed Taveon with our pulm doctor and he actually has an appt with him on the 27th so we will do more discussing but basically he is going to refer Taveon to an immunologist because he gets so sick all the time. Everyone is sure that Taveon has an immune deficiency. So after he sees this new doctor I believe we are going to talk about what different options there are to help his immune system. There have been some ideas thrown out there but we will wait to see what this doctor says before posting about them. Taveon will also need to have another hearing test. We all think he has lost some more hearing because his speech is declining. Hopefully we can get these two kiddos figured out soon.

On a lighter note Hailey is doing just great. She seriously has the energy we all wish we had. We are so happy she is doing so well. Both her and Taveon started soccer and they are both loving it. I'm so happy that they have something that they can enjoy.

Thank you so much for all of the thoughts and prayers. We will be off to Atlanta in just a few days. We will keep you updated!

4/10/2010

2010-04-16T15:52:00.001-07:00

Well things have been crazy here to say the least. We have been trying to get Maggie happy and comfortable. We continue to struggle with a lot of the same things that have been going on for the past few months. The tantrums, bradycardia, pain, digestion issues, and pooping issues. We went to speak with neurology yesterday and there was a lot to talk about and a lot of decisions that we are going to have to make soon. These decisions will happen after we get back from Atlanta but we will definitely have to make some changes with Maggie. None of the things we talked about were great. It included things like Maggie getting on something which would require a shot every week or things that would require her to have other treatments that would require an IV up to a couple of times a month and each time taking a few hours for the treatment. Which then we would need to decide if she should have a central line placed but then we have the possibility that she will be back on TPN and she would need a line for that anyway. Then we are back to the infection place. So anyway it is a lot to think about and to decide on. Maggies Neurologist is going to discuss everything with some of Maggies other doctors to see if everyone can come up with a plan.

In talking with the neurologist about what is going on with Maggie and trying to figure out what we need to do to help figure everything out, she was clear that she still did not know what was going on with Maggie. She did say that she does think that either a mitochondrial diagnosis could very well be either Maggies primary diagnosis or it could be a secondary diagnosis. Neither are good but it is hard to explain because if its secondary then there is this idea that whatever else is going on in her body could be what is causing her mitochondria to act up and have problems. And if we can treat that problem then we could stop or significantly slow down the progression of that disease. But if she gets a mito diagnosis as a primary diagnosis then there is not a whole lot we can do to slow the progression. There are some things that we could try but it doesn't help everyone and it can only do so much. It would be best to do that stuff before she is five because after that the chances of that helping are cut even more. I don't know a good way to explain that but basically we just need to get a diagnosis and then I can figure out how to explain things.

The past couple of days we have gone up on some of Maggies medicine to help with her neuropathy and the pain. Since going up Maggie seems to not be as cranky so that has been nice I think we will see even more improvement when we go up again. It is clear she is in pain, and that is what is causing her to have these tantrums and the many times of hitting her head on everything. Maybe that will be a thing of the past if we can get her more comfortable.

Looking at Maggie she looks great to most people. Yes she is short and little and yes she has a trach and a g-tube on the outside. But over all she looks good on the outside. Its the inside of her that has all the problems. And that is the scariest thing ever. We don't know when her heart rate drops really low if she is not on a monitor because her symptoms are subtle and we don't always know when her stomach and intestines have stopped contracting until her belly pops out. It is very hard because I feel like I'm going to miss something because she looks good to me on the outside. Its deceiving. When she is in pain I have no idea because she looks fine to me so I really have to step back and then I realize that she is in pain even though I can't see it. It makes caring for her stressful and hard. We try not to be neurotic but I have these fears that something is going to happen when I am really not focused and paying enough attention. When I'm looking at her and she looks okay but really shes not. Anyway those are just some of the feelings we have been experiencing.

Yes we will be on our way to Atlanta soon. We appreciate all of the support. Thank you for all of the prayers. We will have a few more appts before we leave that I will update on. Then we will have Atlanta to update on. So lots of updates to come.

4/1/2010

2010-04-02T22:40:00.001-07:00

Okay so we just had what was hopefully the last synagis (RSV shot) of the season today!! Poor Maggie had an ear infection also. She also lost some more weight. So as you can see it was a great appt! (sarcasm)

Anyway it has been a rough week so far. Maggie has been getting more and more aggressive with her "tantrums" or whatever is going on. We have decided that a helmet will only make things worse so we are going to try a light sedation. We are also going to try some other things which I will post about when we get it.

The past few days Maggies stomach has pretty much shut down. Things are moving so slowly that its hard to tell if they are moving at all. We are trying to hold out until we get to Atlanta just to see what the doctor there will say. Everyone is seeing TPN again in possibly the near future. I really do not want that to happen. If that happens we will just be dealing with infection after infection. I guess we just keep trying to find something that will work.

So we have also tried everything we can with Maggies new braces. They are just too much for her to handle. We have gone back to trying to get her old braces to work. She doesn't have great muscle strength so even though the braces are very light weight it is too much for Maggie to lift her feet up. The brace goes up her leg and since she is so tiny with tiny feet and legs they just take over. I will post pics of her new and old braces so you can see the difference. The old ones still fit they just slide off. They don't have the same foamy stuff as the new ones.

We are going to be starting Maggie and Taveon on some allergy medication since they are out of control right now. Hopefully this will help with something. Still working on getting everything in order for the trip to Atlanta. We got some Easter pics taken. And I think that pretty much sums things up I have to run now because Maggie is having tantrum again!

3/26/2010

2010-04-02T22:38:00.002-07:00

So Maggie has been struggling with these allergies. I'm not sure if she may have a cold on top of them or what but WOW! Its been a roller coaster of the past few days. I'm starting to finally pick up on some trends with Maggie. Hopefully it will help for better days in the future. On Wednesday she had a pretty good day and was in a good mood. We did a lot that day and she did a lot of walking. I don't think she knows when to stop. She definitely does not listen to her body. I could tell that she was really tired because she kept falling and needed to keep resting so I would try to put her in her stroller to give her a break or hold her and she did not want that at all. So I let her keep going. Well we all definitely paid for it the next day. Even that night she decided that she was too tired to breathe on her own so she let the vent do all the work for her which meant that she had to be on oxygen all night because she could not keep her levels up. Maggie was exhausted and seemed to be very uncomfortable all day. She was crying every second of the day that she was not sleeping. Luckily she slept a good portion of the day. She got a lot more secretions and her lungs have been really junky too. Last night was also similar to the night before. Maggie's Oxygen dropped down to 61 and would not go up. The nurse was rubbing her and waking her up trying to get it up but it would not go back up so she just grabbed the end of the oxygen thing and held it next to her trach until she came back up. It was a little unsettling to see her sitting so low even though she was awake and breathing what seemed to be well to me. Her lungs are still pretty junky and she is still very sleepy. So now I'm wondering if she might have a cold on top of the allergies. Its hard to say because the trend that I see is that if she has a good day and we let her push herself then the next couple of days are awful and she cannot do anything and appears to get a cold or more respiratory problems. Its frustrating. However now that I realize that she is not going to stop doing what she wants even if she is tired I know I need to step in and regulate her the best I can and see if we can have better days with a good balance. I was really surprised to see that this trend has happened the last few times we have been out or whenever she has physical therapy we can expect the day after to be miserable. I guess it took me a while to pick up on but this kid is all over the place.

Maggie continues to be bradycardic (low heart rate). She also continues to have a lot of GI issues. We will also be getting a helmet for her since whenever she does not like something you say or do she tries to throw her head on any hard surface she can find. She always has a goose egg somewhere so they want her to be protected and are hoping she will learn from wearing that. Should be interesting. Other than that things are pretty much the same. We will probably be bringing Maggie in to get her wheezing checked out but I'm sure we will just get some breathing treatments to do.

Taveon has been having a lot of the allergies as well and his cough is absolutely horrible. Its hard to explain to people that he is not sick its just allergies. Oh well not much I can do to get rid of it. He will most likely have that cough for a really long time with only temporary let up times. However because he has so many secretions going through his body his ears are paying the price. Both of his eardrums burst. That is always fun. If you ask him how he is doing he says he is fine and his ears don't hurt but you can tell that is not true but he does not want to get shots so he will not let you know how he really feels. We are doing some antibiotic drops for now but his ears definitely need to be cleaned out. He cannot hear hardly at all. All of the kids have some wicked eczema so we are trying to keep that under control. I'm afraid Hailey may need to go to the doctor to get something stronger. Hers is so bad that she can't stand anything to touch her skin and she is bleeding. Oh the joys of allergies. Anyway we are not letting this stop us from enjoying any sunshine and warmer days that come through. We have been riding scooters and doing all kinds of fun stuff. I have learned that I am not as in shape as I thought I was while riding scooters my kids ride circles around me. I think I can take them next time. I've been mentally preparing and visualizing : )

Okay well I think that's is. Hope everyone is enjoying some of the spring that peeks through here and there!!

3/21/2010

2010-04-02T22:38:00.001-07:00

Sorry I haven't posted in a little bit. We have been really busy trying to get things ready and figured out for Atlanta.

So spring is here and it is so great! Its a little annoying to go from pretty decent weather one day to snowing and then back to decent weather. So many mood changes. Its hard for us to get into nice clothes and then get all bundled up again. Oh well, I just hope the nice weather stays this way from now on. The kids are loving it right now. Its pretty much perfect for them. Maggie especially, but even Hailey and Taveon have a hard time when it gets too hot so this is perfect for them. Its funny because I am still cold but they run around in short sleeves and say its perfect.

I'm not sure what we are going to do when it gets too hot out. Maggie and Taveon basically lose all their energy and can't move when its too hot out. We have a pretty big backyard and Taveon would want to go out and play and he would get not even halfway and say he was too tired and just lay next to me on the grass while he watched Hailey and their friends play. So I think we will probably end up with a lot of water days in the sprinkler.

So everyone is doing pretty well here. Maggie did lose a couple more ounces. I'm not sure what is going on. She seems to still eat a lot so we will just keep watching that. She is still having a lot of tummy distention so we are still trying to figure out how to keep things moving. I think her stomach has slowed down even more. We also have moved down to maybe getting a bowel movement every other day. Where before it was just once a day. This is with a good amount of laxatives.

The other thing that is totally taking over with this nicer weather is our allergies. Maggie, Taveon and I have the worst allergies. We all sound like we are really sick but its just the allergies. We have also had a lot of asthma problems with these allergies. I think I'm going to have to bring Maggie and Taveon in to see if there is some other medicine to help with this. I'm hoping if we can get them a good allergy med then we won't see as much of the asthma. I'm not huge on giving meds to my kids but if they are needed and will help then I will do it. We are absolutely horrible with these allergies this year. Hailey has asthma too but for some reason she is not being affected with these allergies so her asthma is still under control.

Oh and Maggie got her new braces (for the legs and feet) they are a little wide so we are going to try them and we may need to have them remake them. Maggie has a very narrow foot and its tiny so it makes it hard to get a good brace. Mags wears a newborn to size 1 shoe still so that gives an idea of how small. With her braces of course she will go up a couple of sizes so we can fit a shoe over it.

Anyway I think that's about it for now. Hopefully I can take some pics of the kids playing outside and try and post those next time. Thank you for keeping Maggie in your thoughts!

3/13/2010

2010-04-02T22:37:00.000-07:00

Atlanta called and we finally set a date to go out there. Well.....we still have to check to make sure the OR has time available on that day so I will tell you now it will be in April sometime. We just have to see for sure what days it will be. So for now we are just trying to work out the details like, babysitting for our other kids, travel arrangements, money, and some insurance stuff. I really hate flying on a commercial flight with Maggie and all of her equipment. Oh well once this is done I don't think we will be flying anywhere else with her until she is hopefully all better or at least ventilator and trach free. So after this testing is done it can take a few months to get results back. Just like her last one. But there is still a small chance that we could get some results by her second birthday! How exciting would that be!

I have a lot of mixed emotions about this all. My mind is going in a million different directions with this. I guess the good news is that we still really feel that this needs to be done and that it needs to be done with this doctor. They have a good system of how this will all work once we get there so that is nice. Its good to know that our chances are low for surprises. Well.....I guess anything can happen when we are talking about Maggie.

We really appreciate everyone keeping Maggie in their prayers. And for all of the support!! This is what helps us get through this. I will keep you posted on anything new.

3/11/2010

2010-03-11T11:52:00.002-08:00

Well not too much has happened this week. Its nice to not be running to the hospital for something or another. We did remodel Maggies room!! That was fun. We painted it pink and put some new floors in. We also did some fixing up around her windows (they were newer and we never got around to finishing them) and rearranged her furniture, trying to get more storage in there. We have wanted to do this for a while and we finally just decided to get it done. We live in the city so our house and bedrooms are small which can be challenging when you have a kid with a lot of needs and equipment. The idea was to make it not so hospital like. Well it would've worked if we didn't have so much medical equipment in there;) So needless to say it still looks hospital like. Oh well the pink is nice. We still have pictures we need to add to the wall and a little touching up on paint but for now we are done. We had some great friends and neighbors who came over and offered a hand. Thank goodness or it still wouldn't be put back together. I have some pics but will post more when I hang everything. I don't have any before pics:( Sorry!
We also went for a walk outside and Maggie used her walker and did great!! She lasted about ten minutes before she couldn't walk straight anymore and started hyperextending her legs with each step. But we were so happy to see how well she did and how much she loved it.
We had physical therapy and she did so good with that and then got really tired after just a short time and didn't want to do anymore. PT told us that when she gets tired don't force the walking because she just hyperextends her legs everytime. So I guess its good that we didn't make her keep walking when we went for her walk. We are still waiting on her new braces, hopefully it will be soon.
Another continued issue that we have is her stomach. The new stuff that she is on is not helping at all. In fact I think it might actually be worse now. She looks like she swallowed a ball most of the time and she is super irritable and cranky and retching more. She also has been having some blood in her stool at times so that is really awesome. (That was sarcasm in case you were wondering) We will need to call her GI doc and let her know that this is definitely not working. Hopefully she will have more ideas.
Anyway I think that is about it for now. We appreciate all of the help from friends, family, and neighbors. Thank you all so much! Oh and for the sweet person doing so much research to help us out. I checked with her doctors and she was tested for the last two things you had mentioned and she didn't have those. Thank you for continuing to help us find the answers. It is very nice because even with my research I don't find everything. So its greatly appreciated. Thank you for keeping Maggie in your thoughts.

3/4/2010

2010-03-11T11:52:00.001-08:00

We finally made it to the new GI doctor. We like her so far. It was nice to go in there and have someone have ideas on what we can try next. So we are going to try a couple of different things to see if we can get things moving and keep her from bloating up. She doesn't want to do too much until we get to Atlanta and see if she can get diagnosed. But she said she has a few things we can try before we go so we will cross our fingers that something works.
We also went to the wheelchair shop and picked out her wheelchair. We ended up going with the Kimba spring and we got a bunch of attachments to go with it that Maggie will need. I will take pictures of it when we get it but that will be in about three months. It takes a long time to get this thing. While we were there picking this out Maggie was doing pretty good and then all of the sudden she went as white as a ghost and then got really tired. This lasted a while and then she started getting a little color back in her. We didn't have her monitor on her so I'm not sure what her SATs were like at that time. She seems to do this a lot lately so we might need to bring the monitor with us from now on.
Mags has been doing some more walking. We are really excited! Today she is having weakness on her right side again. She is popping her right leg out to the side. Its like she is having a hard time getting it to do what she wants. But she is still trying! We aren't sure why she keeps switching sides and having so many issues still but we will hopefully get to the bottom of it soon. I'm just glad she is so determined. Her energy levels are not increasing at all so after just a little bit of walking she is exhausted. She might grab her walker and use that for a bit or she will lay down and take a nap.
Anyway thats all for now. I'm hoping this new GI stuff will work. So her belly doesn't stick out so far and she can be more comfortable. Thanks for all of help and support from everyone around us!

3/3/2010

2010-03-03T15:20:00.000-08:00

So I received a call today from Maggie's cardiologist. She said that Maggie's holter monitor showed that she was almost the same as her last one. So basically she has some pausing (arrhythmias) and sinus bradycardia. Right now the pausing is "okay" to watch for now. If it does get worse then our only option would be to do a pacemaker. We are all trying to hope for the best and maybe she won't get longer pauses. We still need to watch this closely so we will do another holter monitor in a couple of months. It all goes back to this unknown diagnosis. The cardiologist said if she had a diagnosis it would be easier to predict what might happen. So we wait.
Maggie had physical therapy today and the funny thing, or I guess I should say, the weird thing about it was that Maggie was noticeably weaker on her left side. Strange? All of the things that she would never do with her right side she was now not doing them on her left side. She was really pushing her foot out too. I'm not sure what the word for it is but she was walking really weird on her left foot. Oh and yes as soon as I posted about Maggie not wanting to walk anymore, that night she was walking with her walker and the next day she was walking without it. I mean she is not a full walker yet but she will take a couple of steps to get to one thing from another. We were very excited to see that.

With this new milestone comes a very cranky tired baby. She seriously gets so tired from "walking" she can barely function because she is so tired. She has been sleeping a lot more lately. She gets really cranky before she falls asleep and starts banging her head on the floor really hard so she always has a bruise there. I don't know how to get her to stop doing that.

The way Maggie is walking is obviously from her hypotonia so we will just have to keep working with her to improve this. When she tries to stand in the middle of the floor she does not bend her legs she just pops up by pushing with her arms. This is not good for her legs. So we are told. She hyperextends her legs all the time. If she is just standing leaning against something she is always hyperextending her legs. We really need to work on this.

We are still needing to get in to see neuro. Our nurses have been trying to get some of the "episodes" at night on video. ( Thanks to our old nurse Mindi for the great idea!) Hopefully this will help them to see what is going on. She will totally freak out and then just stop and she's asleep again. We all just look at each other like what the h*** just happened? We'll see what happens with that.

And finally we will be seeing her new GI doctor tomorrow. I think I kept saying the appt was on Thurs but I made a mistake its really on Wed. I'm glad I figured it out before it was too late. Whoops! I'm hoping some great things will come from this appt. But usually nothing great happens if I want it too. So maybe I won't have any expectations at all. lol

Okay so that is it for now I think ;-) I will update again soon! Thank you so much for all of the prayers. We appreciate them all especially during this time of the one step forward four steps back stuff. That is how it goes but its no good! I don't like that stuff! Hope everyone is staying well! I saw some sunshine yesterday and a little today. I didn't even wear a jacket! Yay for spring!

2/27/2010

2010-02-28T20:06:00.000-08:00

Well I'm pretty sure Maggie's doctor is out of town. I've called and emailed and no response. This means that we still haven't heard back on Maggie's holter monitor. I'm hoping the beginning of next we can get a hold of another doctor if this one is not back so we can get info. Maggie is still bradycardic.

Yesterday morning Maggie woke up with a pretty good fever. Her entire body was really hot. This is not typical for Maggie. Even if she is 105 she normally has parts on her body that a still cold. So anyway it was different. She was not 105 yesterday she was sitting around 101. But there didn't seem to be anything wrong. By evening her fevers were down even though she still felt very warm and the nurse and I still thought she had one but we would check and she didn't. It was very strange. Then when she went to sleep she was of course bradycardic and she kept dropping her SATs. A lot of DSATing. It didn't make a whole lot of sense to us because normally she does that when she has apnea but she didn't have apnea last night, well, not every time she DSATed at least. So we will have to see how she does tonight.

The other thing Maggie has decided to pick up is tremors. This has actually been going on for a while but I think I've been in denial about it. A few weeks ago her arms and hands were shaking while I was playing with her and I wasn't sure what to think about it. It stopped after a little while and so I just didn't think too much about it. However since then I keep catching her doing it. And two days ago there was no denying that something was wrong. I guess we need to have it checked out. I called our physical therapist to see if she had any ideas on why she was doing this and she just said that it could be so many things. She told us to call our doctor and maybe make an appt with neurology. Maggie has also decided that she doesn't want to have anything to do with walking alone or with a walker. I'm so glad that we got that little video of her taking those steps because she has not even come close to doing that again. She has been struggling while cruising along furniture lately. She will sometimes do pretty good and other times she can't stop falling. She will take a step with one leg and its like she doesn't have the muscle to hold herself up or something and she goes crashing to the ground. She will get back up and continue to do the same things.

We will meet with her new GI doctor this coming week and it can't come fast enough. Maggie is not tolerating anything in her stomach. Every single time she eats her stomach blows up huge. She gets really irritable and the situation is very frustrating. She has lost a few more ounces so it would be great if we could figure out what is going on. Everything seems to be crashing down all at one time. But that's how it goes. Maggie looks pretty good if you don't spend a lot of time with her to see all of her problems. So that's a positive right?

We really try not to freak out about everything that is going on. If we stress it doesn't help us get anything done faster. So we try to be patient and hope that everything will fall into place and get taken care of.

We appreciate everyone that has been helping us and praying for Maggie so much! Sean and I are always talking about the amazing people that are around us.

2/23/2010

2010-02-23T09:20:00.002-08:00

Well we are still waiting to hear back on Maggie's holter monitor. We saw her pediatrician yesterday. He said it could be just a little bit because it takes some time to get all the info to the doctor. He is very curious to hear what is going on with her heart. Maggie also got her RSV shot yesterday. Glad to have that taken care of. Mags lost a few ounces as well which he said that because she has been sick and because her GI system is not working properly it was expected. She may lose a little more.

Maggie has been having some rough nights. She is still bradycardic and having other arrhythmias. She has also been having a lot of weird "episodes". We definitely need to get them checked. It is so hard to continue to have this many appts a week. We average about 3 to 4 a week, every week. Sometimes there are more. I hate to have so many appts to bring her to and with the other kids it is even harder because I don't like bringing them to the hospital with all the germs not to mention I can't concentrate when they are there. I mean there are times that they are really good but that is not every time. The hospital is no place for a healthy child to be spending there days. Well, its really no place for anyone to be spending their days but Maggie needs to go. But on the other side of that it is hard to find people to watch the healthy kids. We hate having to put so many people out and have their days more complicated because of us. I wish there were three of me! Anyway I shouldn't complain. Things can always be worse. So I am grateful for what we have and I am grateful that I can bring my kids with me if need be.

So Maggie will be getting casted to get new leg braces today. This should be interesting. I think she will be good if I can give her some cereal to eat while doing it. She is older this time and makes it known what she does and doesn't want to do. So I'm hoping it goes semi smooth at least.

I hope everyone else is staying healthy. Hailey had a little bug with puking but so far the rest of us have been okay so we will just cross our fingers. I can't wait for spring and summer!!

I will post as soon as I hear anything back about the holter or anything else. Thank you for checking up on Mags.

2/19/2010

2010-02-23T09:20:00.001-08:00

Maggie turned 20 months yesterday. I can't believe my baby is almost two. Maggie still has a lot of problems so she doesn't look like an almost two year old and she doesn't exactly do all the things an almost two year old would do. But she has improved some over this past year!! We are so proud of her. We are hoping that maybe in the next six months she can get to a weight so she can turn around facing forward in her carseat. That weight is 20 pounds, which she obviously hasn't reached. Maggie seems to have ups and downs with weight gaining still and stalls, which is what she is doing now. Maggie is such a loving goofy kid. She gives the biggest hugs and if you ask for a kiss she will give you the side of her head. Its pretty funny. She loves to dance, which is her sitting and she does head movements. She can get pretty wild though. She knows some signs and is very proud of the ones she knows. If she can sign something she wants then she is very persistent. Maggie likes to help us dress her in the mornings, and she is normally really good about all of her changes with her trach and g-tube. She is so good about all of the medical stuff. She knows when she needs to be suctioned and will pop her art nose off so we can suction her. Maggie loves going to grandmas and grandpas house, if you ask her if she wants to go there she gets really excited and nods her head yes with a huge smile. I think its because they give her anything she wants, shes spoiled there. Maggie seems to capture people everywhere we go. I cannot leave my house with her without someone commenting on how beautiful she is. We love our Maggie soooo much and are so happy she is a part of our family! Happy 20 months Mags!!

So an update on Maggie, she wore the holter monitor and they should be getting it probably sometime today. So we will wait to hear what that showed. She continues to be more bradycardic than she use to be and for longer times.

Maggie will be getting new leg braces they are going to be the softies ones for those that know about leg braces. She is doing a lot more toe walking and she is also turning her feet out. With her other braces she just slips her foot right out and we are told with the softies that will be a lot harder for her to do. We also have an appt with the wheelchair store on March 4th so we will get her wheelchair ordered then. We decided that we need to go and look at them all because after discussing with some of her doctors and therapists Maggie could end up being vent dependent 24 hours a day. Since she is needing more support instead of less. If her muscle tone continues to get worse then she may need that support all the time. She just doesn't seem to have the strength to open her lungs all the way. Anyway so the kimba that our therapist recommended may not be able to hold all of Maggie's equipment. We will check them out and decide what will be best for her.

Maggie is going to see neurology again for a few things. One, so they can followup on her neuropathy and two, to do a bigger eval on her for seizures. Sean and I and our nurses believe Maggie is having seizures at night when asleep. Hopefully we are wrong but she does some really weird movements. So we need to get them checked out. She has had more staring spells during the day as well.

So that's the update. Thank you all so much for your support!! We appreciate everyone so much!

Oh and we are still planning on bringing Maggie to Atlanta. We are just waiting for them to receive her records and then they should contact us. We will keep you posted on that.

I posted a video on my blog of her trying to walk. I can't post it on here so if you want to check it out. Go here www.michelleagnew.blogspot.com

2/16/2010

2010-02-16T21:08:00.001-08:00

Well Maggie has been doing some really funky heart beats lately. While we were in the hospital Maggie was having some irregular heart beats and pausing. We all know Maggie has some weird heart problems and she does those things. This time it was just more frequent. Well, we all didn't think too much of it and as you read from the last post we came home. So last night Maggie was having a lot of arrhythmias and pausing. In fact she was bradycardic all night and went into the 30's and 40's. It was mostly in the 50's but we could not get it above that. So we kept trying to stimulate her to get her rate higher. The nurse was doing sternum rubs and still we could only get her in the 60's with that. Anyway long story short, she had a rough night with that and today we went and got a holter monitor to see what in the world is going on with her. Maggie likes to keep us on our toes. Hopefully we can get a good idea of what is going on with her from this monitor. Before her arrhymias were little. Enough to get from the holter monitor but not enough to pick up on our monitor at home. But now they are enough to pick up at home and everywhere else. Her pauses are a lot longer now too. That is a little worrisome but we will just wait to see what comes back.

As for the rest of Maggie she is doing better and has a little more energy but still can't do what she really wants to do. She is still pretty irritable. More so than she use to be so I think she is getting a little bit closer to the old Maggie that way.

Thanks for checking in on Mags we will keep you posted on results.

2/14/2010

2010-02-16T21:07:00.000-08:00

Well we got called once again to bring Maggie back to the ER. Our doctor called and thought we should bring her back and after updating her on Maggie's night she really thought it was important to go. ( Three trips to the ER in a week.) The night before last Maggie had a really low temp and was bradycardic. They thought that this was due to the infection. So we went back to the ER and our doctor had called ahead this time and so when we got there we went straight back. They wanted to watch Maggie for a day to see how she was doing. They also did a lot more testing. She got some IV antibiotics and we are waiting to see what another blood culture shows us. We need to find out why she gets infections so easily. There is a possibility that her stomach, bowls and intestines are just struggling more. So we will just have to wait to see what her GI doctor thinks. We are hoping that this infection did not come from these areas. But we will need to find out where if not there. We will need to watch Maggie really closely for any other signs of infection in the future.

That is pretty much it for now. I am so tired from no sleep so this is it for now. When I can think straight I will read over this and see if I missed anything but I think I got it all. We should be getting a call about her cultures within the next few days so I will post those and hopefully they will be negative. Wow what a crazy week!

Thank you for all of the prayers.

2/12/2010

2010-02-16T21:06:00.000-08:00

Sorry I haven't posted sooner. Maggie's fevers are almost gone completely. Today is the fist day she has had a little color to her face in a long time. She has still been sleeping almost all day. We got a call from the ER saying that Maggie's blood culture actually came back positive so we were called back in. Well we sat there for three hours and didn't get called to a room. We ended up leaving without being seen. The ER was packed with sick kids. I just couldn't stay any longer putting Maggie at more risk. She already has an open airway going straight to her lungs and she has lung disease so I felt like we were doing more harm by staying there than leaving. I let the ER doctor know and will still let her other doctor know that we left and we are going to try and get more labs drawn tomorrow. So we will get things taken care of. She also has to get a secretion test because she has now come down with an awful cough and constant secretions. Poor little kid. I am just happy to see her in a little bit better spirits. We are getting a little bit closer to her baseline. She still wants nothing to do with cruising and using her walker but I hope in time she will want to do that again.

Hopefully our next post will be about how well she is doing and how she is not sick anymore. We appreciate all of the help we have received and all of the prayers. Thank you!!

2/11/2010

2010-02-11T09:38:00.000-08:00

Maggies cultures all came back normal. They are just not sure what is wrong with her. We didn't end up bringing her back to the hospital today. I am just keeping her doctors updated through email and if there is any other testing they want her to have we will bring her in for that. RSV and pnuemonia are really bad there right now so we all think its best for her to stay at home and keep the doctors updated. She basically had a day like yesterday today. She slept almost all day and when she is awake she is super irritable. She also continues to have fevers on and off. It was really sad today because she was hungry but didn't have the energy to sit up and eat so I put a bowl of food next to her and she just layed there and ate it. She was so tired that she couldn't even finish it and I didn't even give her that much. She still looks really pale and has droopy eyelids. She has been a little swollen today from the bolus' of fluid they gave her yesterday. I think she is finally peeing a little of it off. Some people wonder why we don't want her to be in the hospital if we don't know what is going on. So the reason for this is because Maggie has all the equipment we could need for her at home. We also don't live far from the hospital so its best to get the testing done and leave. She could catch anything hanging out there and with people visiting and nurses and doctors going from room to room makes transfering other illnesses easy. So this is why we choose to keep her home most of the time. We weren't always like that but now that we have been doing this for so long we know what to look for and we know what to do if things get complicated. The doctors didn't like this at first but now they know that Maggie gets the best care at home. And they are usually the first to recommend this now.
We will continue to watch Maggie closely and update when needed. We hope she gets close to her baseline soon. We appreciate you all keeping Maggie in your thoughts and prayers.

2/10/2010

2010-02-10T09:46:00.000-08:00

This is just a quick update. Maggie has been pretty sick. She still has that high fever that I posted about in the last post. This is her third day being high and before that she had a low grade fever. She has been pretty lethargic and is really pale. She is tachycardic and is retracting while breathing. She also has petechiae all over her body, which would indicate low platelets. The doctors have done all kinds of tests and they cannot figure out what is wrong with her. They checked her blood and still no answers. But because of Maggies blood problem they really can't rely on her blood work for answers. She is really irritable when awake but sleeps most of the day. She doesn't have a lot of strength to even keep herself from falling over while sitting, unless, with tylenol we can get her fever down a tiny bit for a short period and then she feels a little better to move around a little bit. Motrin is making the petechiae worse so we aren't giving that to her anymore. I kind of had a feeling that the hospital wouldn't know what was wrong with her and that is why I waited to bring her in but new things keep popping up so I thought it better to be safe than sorry. The hospital got some cultures and will wait through the night to see if they grow. Maggie got an IV bolus to see if that would help bring her heart rate down. We are going to bring her home since they don't know what else to do for her. We will check in with them tomorrow.

We are really hoping that whatever is causing this will go away soon. Please pray for Maggie. This fever has taken over long enough.

2/8/2010

2010-02-08T08:23:00.000-08:00

Well we are trying to get everything together to send to Atlanta. We hope to be able to send that all in the next couple days. Then we will wait for the doctor to review it and then they will make an appt for us. Its a long process but I feel a lot better about this doctor doing it because he is one of the best in the world and he can do it fresh. It is going to cost a little more than we had thought so we are still trying to come up with that. They don't take our insurance, however our insurance will pay for some of it because we can't get this test done here. Anyway just trying to work out some of the details but I know it will somehow all work out and we will be able to get there soon. Maggie has had a high fever for a little over 24 hours now. This has been a really weird week with her. She started out just being really cuddly and sleeping a lot. That was at the beginning of the week. Then she started taking steps on her own (which was really exciting) and got really really tired but she would not sleep. She started going crazy because she was so tired she was banging her head on the floor and she was just delirious but would not go to sleep. Then after a couple days of the insomnia she got a high fever and is just acting weird. She is also not really having any poops. She is pretty constipated. She continues to get extremely distended whenever anything is in her stomach. You could give her one cheerio and she would blow up. She has been this way for weeks now but its getting a tad more sensitive. She has also been aspirating more. Her swallowing has been pretty weak. The staring spells have been more frequent as well. We are just watching her closely and hopefully we won't have to bring her into the hospital. Back to the taking a few steps. Maggie took 11 steps the other day. She was really really wobbly and you can definitely see she had to concentrate on getting her right side to move. But we are proud of her. She hasn't wanted to try again for a little bit but I'm hoping when she feels better she will try. She can't do it unless she moves really fast. If she slows down at all then she loses balance and falls. She was completely exhausted after doing that. I hope we can see that again really soon. Taveon is doing fine from the surgery still. So that has been really nice. And its way nice that he is potty trained now and we don't have to change his diapers anymore. Its still frustrating how afraid of public toilets he is but with few tears and a little pep talk hes been able to get over his fears. I think he was ready a long time ago to be potty trained but his fear of toilets got the best of him. Please keep Maggie in your thoughts and prayers. Poor kid just gets hit over and over again. I put some pics on here. Maggie has sensory issues and she hates grass so that is why she is crying while on the grass. But they are way cute. These were taken by my sister Mindy.

2/2/2010

2010-02-02T21:22:00.000-08:00

Well I guess I'll start with Taveons surgery. He actually did well with this. We did not give him versed this time and I'm really glad we didn't. He went back to surgery well and when he woke up he did awesome. All of the nurses that walked by him in the recovery room couldn't even believe he had just had surgery because he woke up so well. This was a nice change. The doctor said that his ears were full of puss and so they took that out and put the new tubes in and then he said that his esophagus was inflamed pretty badly and they took a biopsy of that. He said that he thinks that Taveon has an immune deficiency. I told him that he has been tested for a lot of those and so he said that he doesn't know what else it could be. So who knows. Anyway they wanted him to stay over night but he was doing so well so we asked if we could take him home. They called the doctor to ask and he said that since we have already been through so much with him and Maggie he trusts that we know what we are doing so he said he can go home. So that is where we are and doing just fine.

Now for Maggie. She saw genetics and had physical therapy today. When we saw genetics he said that she still had significant low tone throughout her body and is even wondering if it may be getting a little worse. Her palate looks more narrow and higher which is a sign of low tone. He was surprised since she already had a pretty high palate. He said that with her low tone he doesn't think she will be able to walk soon. Even though she has tried to stand for a few seconds and is cruising. He said that between her loose joints and low tone that she is going to struggle with balance a lot and with endurance. Which she really already does. He is really worried about her getting scoliosis. So we will have to watch that very closely. He checked her out from head to toe and can't think of anything else that she should be tested for. He is really thinking Mitochondrial, and he really wants us to get that second muscle biopsy done. He will be at a meeting with all the genetics doctors here and so he will present Maggie to them so they can all put their heads together to see if they can come up with anything else. He also thinks that she is not a dwarf but that she is going to be of short stature just by looking at her and measuring everything. Oh and apparently in her MRI they saw that she has a bone at the base of her skull that is smaller than it should be, they will just check it and keep an eye on it. He said that if Maggie does end up having something Mitochondrial that we should have Taveon tested too because of his problems. It is a genetic thing so he could also have it. Taveon also has low tone just not as significant. We really just want to go and get this done and are waiting for the doctors here and in Boston to let us know when we can go. Maggie will also be getting a wheelchair. It is a kimba stroller wheelchair that should fit Maggie nicely. It will help her to sit properly (which will hopefully help with preventing scoliosis) and it will put her up higher so she can be more apart of things. She will also be going to Shriners hospital so they can help make sure she has all the equipment that she will need and they want to get her new different kind of leg braces. So this is what the plan is.

Maggie seems to be feeling better but she still has a lot of secretions so not sure about that.

Thank you for keeping Maggie and Taveon in your prayers I think all those prayers helped Taveon today. He did so well. We are so proud of him. I added just a few random pictures.

1/23/2010

2010-01-25T10:03:00.000-08:00

Well Maggie had her MRI and now we are waiting for results. I'm sure we will hear something by the beginning of the week.

Not too much has happened just a lot of appts. Maggie still has a lot of thick secretions but she seems to be handling it pretty good. She has been really happy lately I think its the neurontin. Ever since being put on that she has been super silly and funny. They say it is suppose to sedate her but she acts like she is on crack about an hour after you give it to her. I don't mind because she just seems like she must be in pain when she is not taking it. We have missed a dose or two and she seems to be more whiney and doesn't really want to do anything herself. So its great when we don't miss!! She also seems to walk a little better with her walker you can only notice a problem if you know what you are looking for, but after a bit you can notice a lot more of her troubles with her right side.

So I thought this time I could post some pictures but my computer started having problems in the middle of this post so I will have to wait. I'm back on Seans work computer. During the time between getting this post finished Maggie start to retch a lot and for a good amount of time. I vented her tummy and she had so much residual I had to take some out and leave it out. She seemed to do a little better with this but then she needed her meds so we gave them to her and she couldn't stop retching again. We called the on call doctor and he gave her a perscription for zofran so she seems to be doing a lot better with this. And this morning we have only had a handful of retching episodes. Much better than last night. We thought her nissen was going to come undone. Yikes!!

We are just loving her up and we love watching her growing personality. Although I think Taveon is tired of her growing personality. They are only 19 months apart and they are always bugging eachother. I'm just glad that she is acting like a normal toddler for the most part. She cracks me up and she knows it.

Taveon update: Taveon is having surgery on Feb 2. His ear infections never went away even with the four shots that he had to get. It looks like he is getting croup right now so they want to wait until it is over to have the surgery done. Along with tubes he will need to have the two scopes one into his lungs and one for his esophagus. They are also going to take more biopsies. He said that there has to be a reason that he keeps getting so sick and gets so many ear infections. So hopefully they will figure it out. They scheduled him to stay over night just in case because on his last surgery they had a really hard time keeping him stable during it. I just think that if the tubes aren't going to work then why do we keep putting them in. I guess we will see. This day Maggie will also see genetics so it will be a productive day.

As for Hailey (our healthy child) she is doing amazing. Hardly ever gets sick. And she is so super smart. She is reading like a champ. At least I don't have to worry to much about her right now. I'm sure all the worrying for her will come when she is a teenager but hopefully she won't be too crazy!

Thanks for checking in. And a bunch of thanks for keeping Maggie in your prayers. Now there is another blog that I follow and they are saying goodbye to there little girl. So if you could please say some extra prayers for her and her family that would be so great. Her name is Emma and if you want to check out her blog here it is emmadunnam.blogspot.com Thank you all so much!!

1/14/2010

2010-01-16T13:11:00.000-08:00

Well we had a five hour hematology appt today. Maggie had to get blood drawn and it was crappy. They poked three times and got about half of the blood they needed. Then they looked some more and couldn't find anymore veins to use. Poor Mags. So they had about four doctors go over her current blood work and past blood work and they could not figure it out. What they came up with is that she does not have a blood disorder but that her blood is messed up from whatever this "disease" or "mystery diagnosis" is. So we cannot expect her blood work to ever be what it should be at any given time. For example if she is "well" then her blood may not show that she is "well". If she is "sick" her blood may not show that she is "sick". It's pretty confusing because her blood can be normal at times but its rare. And what they think when it is normal is that the disease or whatever it is, isn't as active at that time, and like I said it is rare. Her blood does seem to be in a semi pattern (well not really a pattern, its hard to explain) when she is sick or well but unless whichever doctor is taking care of her knows about how her blood works then they will not know what to do with her. So it is very important that all the doctors know of her problem. They don't know what her diagnosis is still but they think that this is definitely a piece of the puzzle and that it definitely shows that there is really something wrong. They also said that her transporters don't work properly. So it doesn't matter how much iron Maggie gets it won't make a difference because its not an iron problem its a transport problem. They can't get to where they need to be, like to all the organs that need it. Anyway basically there is nothing we can do about this until they get a diagnosis because we have to treat what she has, to make her body work properly. Oh and some other awesome news (I'm being very sarcastic) her blood is showing that she is starting to get an infection somewhere. This is what the hematologist said so they know how her blood works. They told us to watch her very closely this next week. If she gets a fever we need to bring her in.

We are still waiting for some more labs to come back that could be helpful. Hopefully we will get them tomorrow or Tuesday. We also need to follow up with them in 4 - 6 weeks.

Oh, and some people have asked if Maggie has gotten her smaller walker already. She has not gotten this yet and we are still looking for one. Thank you for asking and continuing to search for one.

I know this is all a lot of info over these past two days and it is all confusing and hard to explain. So if you have any questions please let me know I'd be happy to try my best to explain or answer anything. Sean and I are still processing things so we aren't really sure how we feel about everything just yet.

We appreciate all of the thoughtful comments, emails and phone calls. You are all so nice to be so supportive and pray for Maggie. Thank you from the bottom of our hearts.

1/13/2010

2010-01-16T13:10:00.001-08:00

Okay so we got a lot of info today so I hope I get it all right and I hope I don't forget anything.

We saw three doctors today. Well technically we saw two doctors today and the other one participated from another office and could see x-rays and stuff so it was like he was there. So we were told by complex cares doctor that Maggie has considerable weakness in the right side of her body. She watched her scoot and try and pull herself up on things. Then she did some things with her body to check how strong she is when she is pushing up. This is how she could see that Maggie is weaker. Maggie really didn't do much with her right side. She would like Maggie to have some more neurological testing. She also agreed it looks like a neuropathy. She also checked her head measurements and agreed that her head is growing really fast. For now we are just going to watch this. She also determined that Maggies trunk area is weak as well. We are thinking that this also has to do with the neuropathy. Oh and Maggie has started taking neurontin for this so we will see if it is going to work. And another thing that I don't know if I had mentioned this before but Maggie has a lump in her leg (which my brother in law Trav noticed and said something about but I just thought he was looking at her scar from the muscle biopsy and then our nurse found it when she was taking care of her) we aren't sure what it is at this point but they are concerned that it could be something that she is getting in her system from food or medication and she is not absorbing it and she is not pooping it out so it builds up in her tissue. So at this time we have to watch her closely and make sure she doesn't get anymore. If she gets more it could be bad and they want us to bring her in asap. So we will wait and see. It also could just be something (not sure what) that could go away on its own. Thats what we are hoping for. This doctor agrees that Maggie should get the second muscle biopsy from the mitochondrial specialist and so she is working with Boston to get this set up. She also is going to get us scheduled to see the genetics team again. Okay so I think thats all with that doctor.

With ENT he worked with pulm too so this will be both of their info. As far as her airway goes he wants to put Maggie out and put the scope down to see if she has any granulation tissue below, above, or around her trach to see if this is why she struggles so much with the PM valve on. We also changed her to a pediatric trach instead of her neo trach so its just a little longer thats it. We had a chest x-ray done today which shows her aspiration and lung issues. Basically that was all the same which was not super great. It also showed that her lung volume was still pretty low so they had to adjust her vent settings so that her lungs will open all the way. Thats great, maybe we won't be getting her off the vent anytime soon. They are very concerned about her chiari right now since everything seems to be having a really hard time right now. For instance she dsats everynight example last night she dsated 18 times. Every night when she does this and she is on the vent we try her off the vent and she does the same thing so its pretty concerning. So needless to say they want to get an MRI of her head on this coming Wednesday. They are worried that the spinal fluid is not flowing well.

Well I think that is all the info from today. And I will update again soon. Maggie sees hematology tomorrow. If I forgot anything I will update it on that update. This was a lot of info for Sean and me so we are still trying to process everything. Also Taveon is going to be seeing ENT on Wednesday to see when he will get new tubes and see what else we need to have done.

We appreciate all of the support. We hope everyone is well and continues to be with the sick season still around.

1/9/2009

2010-01-11T09:31:00.000-08:00

I'm still using Seans work computer so I can't post pictures but as soon as I get mine back I will post some pics.

For the last..........well, forever Maggie has had tummy issues (GI issues) and since having this new g-tube placed her poor tummy has just been getting huge. We can barely feed her and her tummy blows up. The sad part is that she loves to eat, but I don't think that she is always hungry when she eats. We (Sean, me and the nurses) have noticed that she will want to eat all the time and a lot of the time she is not really enjoying it. We can tell by the look on her face. We think she is just eating because she is uncomfortable and doesn't know how to feel better so she thinks she will feel better if she eats. Now the even sadder part is that I get talked to everytime speech therapy comes. Because Maggie aspirates so she should not be eating by mouth but she likes it. So I don't know what to do because she asks for it. So speech therapy asks me if I told the pulm doctor how much I feed her. Well, no I haven't. Its not that I want to put her in danger. She is really good at coughing things up and her last chest x-ray didn't look any worse than the other ones. I just can't say no to her. She already had an oral aversion and when they told us she wasn't aspirating anymore we worked really hard to get her to eat again. So then when they looked at her lungs and put the scope down to watch her swallow they said oh nevermind stop feeding her she is still aspirating everything including her saliva. So its really not my fault and I don't know what to do. And I don't know what to do about her tummy. She has psuedo obstruction but I'm not really sure what I should be doing for it. Our GI doc told me to experiment and see if I can find something that works for her. If I can't find something she will need to go back on TPN and I DON'T want that. So I called another GI doc to get a second opinion and we can't get into them until March 3. What the heck, I don't think her poor tummy can take it for that long. Its so frustrating seeing her so uncomfortable. I hope I will be enlightened by something soon. I need to come up with a plan. Oh, and we do see pulm this week so I am going to tell them everything. Its not like I've purposely not told him, he has been on paternity leave so we haven't been able to really talk about things we have only talked about her vent and stuff over the phone. Anyway I hate tummy issues.

An update on Maggies walking with a walker. She has not been as interested walking with her walker lately. When she does try she can't really move it. I think she is going through a weak faze or something. It use to be a little tough for her because the walker is so huge and heavy for her but she could move with it and she was pretty good at it considering the size of it. But now she can't even move it. She tries and tries and gets so frustrated. I hope things will get better soon so she can be a little more independant. So many people have been trying to help us find a smaller walker for her and we appreciate the help so much. I think it will help a lot.

We have a lot of appts next week so I will have lots of updates to post. We appreciate so much all of the thoughts and prayers for Maggie!! Thank you!

Taveon update: He is doing much better with his ears. He will need to get new tubes placed again because of the eardrum that ruptured and how bad the infections were the tubes just slithered out, but he is feeling a lot better.

1/4/2010

2010-01-06T12:45:00.001-08:00

Maggie had her appt with the orthopedic doctor today. He basically said that her hip looks okay so no more brace for now. He said that if she does not start putting more weight on her legs soon then by the time she is two she could have problems with her pelvis and both hips. Her numbers on the measurement were a little high but okay for now. If they look the same or worse in four months then he will need to do more. The only way to fix this is for her to walk. Well the only problem is, we can't get her to do more than what she is doing already. We will have to talk with physical therapy to see what we can come up with. The doctor also said that her problem with her right leg is a neurological problem. Great, now what. Well oddly enough the neurologist called me today to talk about the appt for hematology. So I told her about what the ortho doctor said and she said that it is very likely that Maggie does have a neuropathy. She said that it actually fits in with the symptoms of the blood disorder that she thinks that Maggie has. So she thinks that Maggie is in pain and this is why she doesn't really want to use it very much. I think this is interesting because Sean and I have thought that she has been in pain (not in her right leg per say) for some time. We didn't know where her pain was but now it could be this. So we are going to start her on a medication but we are not even sure if she will absorb it. The neurologist doesn't think that Maggie absorbs medicine from her stomach. So it will be a try it and see type thing. She would also like to do another EMG (test on her muscle, not a biopsy) to check her right leg. When she did the last one she only tested the left leg and her right arm which showed that she had something minor in her right elbow so who knows what all of this means right now. Hopefully we can figure something out soon.

Maggies hematology appt will be next week. Along with her trach vent clinic that is with ENT, Pulm, and Complex cares doctors. I got her in early for this appt because she has been having such a hard time lately. I hope things will go smoothly next week and we can figure some things out and get a plan. As soon as we know more I will update.

Oh and another interesting thing is that Maggie is really interested in the potty. If you ask her if she needs to go potty or if she is poopy she scoots on her bum to the bathroom and gets on Taveons potty. She is so smart. Who knows maybe she will be potty trained before she walks ;)

Thank you for all the well wishes for the new year.

1/1/2010

2010-01-06T12:43:00.000-08:00

Well I can't believe 2009 is gone! Crazy! We had a really rough year and are gearing up for another big year with possible trips to some mitochondrial specialists for another muscle biopsy. This is just what Boston wanted us to do last year and we decided to wait. We now feel the time is right to go ahead and do this. So plans are being arranged.

Some tough things Maggie had to go through in 2009 include:

Nissen surgery
G-tube placed
ear tubes
oral aversion problems
muscle biopsy
spinal tap
a stay at Boston childrens in the PICU for 4 weeks with losts of testing
MIT taking samples of her DNA
dislocated hip
intestinal biopsies
lung biopsies
multiple scopes
multiple swallow studies
being on TPN for a few months
lots of picc lines placed and removed
Broviac placed and removed
2 septic infections which we almost lost her from
new g-tube placed
multiple stays in the hospital
getting more symptoms that are on the mitochondrial list :(
and probably more that I am missing.

Now some fun things that happened with Maggie in 2009

an awesome fundraiser that our neighbors did
getting to Boston
MAGGIES FIRST BIRTHDAY!! even though she was only ten pounds on it we are still excited!
gaining a little weight
eating by mouth again (I know I will probably get in trouble for that because she aspirates but she loves it)
learning to scoot on her butt
getting really good at signing
using a walker to try and walk
having a really great sense of humor
getting use to nursing
getting past a few of her sensory issues ( more needed but its a start)
last but not least getting support from all around the country and making lots of new friends

I am still without a computer. I have to use seans work computer so I haven't been able to post as much. Hopefully mine will be better soon!! I posted in the last post about Maggies head being big so we were going to get a CT of it to check it out. Well before we could get that scheduled Maggie had an little fall off of her chair and onto the tile head first. She was retching some and we were just nervous that she may already have fluid on the brain. So we took her up to the ER to get it checked out and they did the CT there. Everything looked okay on her CT so they said that she just had a big head. But we will just need to watch it. While we were there because she keeps getting back to back colds they did a culture from her secretions and we are waiting to here back from that. Maggie also has an appt with orthopedics on Monday so we are excited to see if they will have some input on what we should do about her right leg. We also will be seeing ENT soon. Maggie seems to be struggling more with her airway. It almost seems like it is getting worse. She has her ups and downs with it but it seems like it could be at its worst so far. So we just want to get it checked out to make sure.

We appreciate all of the support and prayers. We are so grateful for all of you and all of the help we have received over the past year. We have met some amazing people along the way. Thank you all so much!!

12/24/2009

2009-12-23T23:05:00.000-08:00

So I'm very sorry that I haven't updated for a little bit. My computer crashed yet again. Man computers can be annoying. So anyway Maggie has been doing okay for the most part. She has had a couple of colds which have been pretty tolerable for her. Not much other sickness. But we are home all the time so I guess that means its paying off. Another thing that has recently happened, is last week when I went to get Maggie in the morning I noticed her head looked really big. Something was very very different and it made me a bit concerned. So I asked Sean what he thought and he agreed that her head looked really big. So then I asked our nurse later that night when she got there, she also agreed that she looked different in her head and around her eyes. So I debated on if I should bring her in or not but decided to wait because she had an appt the next week, which would be today. We went and they do their normal thing of measuring and weighing everything. I was just going to wait for the doctor to come in to mention to him that I thought her head looked different to me. Well after the nurse measured her head, she went to put it in the computer to add it to her growth chart. Then another nurse came in and wanted to check the measurement of her head so I knew something wasn't right. I asked if it measured big and they said yes and the doctor would be in to talk to me. So when the doctor came in he wanted to mearsure her head again. They all three got the same measurement so now he is pretty concerned. Her head grew a lot. I mean a lot a lot, in less than a month. So he wants us to get a CT right away. We will be calling tomorrow to see when they can get her in. The worry is that because of her chiari (thats where the brain sits on her spinal cord) there could be no flow of spinal fluid and it could be building up in her ventricles. So that is really not good. If she starts wretching or acting strange in any way we are suppose to bring her to the ER. I knew things were to good to be true to stay quiet for too long. Oh well we will do what we have to. We also still need to make the appt with the hematologist too. They still haven't called to set that up so we will need to call and make sure something has been scheduled.

Maggie has been walking with her walker and liking it so far so that has been good. The problem that we have been noticing is her right leg doesn't really move very well. Her left leg does most of the work. Her right leg likes to drag a little more. She also does not have the range of motion in her right leg like she does in her left leg. So we still aren't sure what that is. Both legs seem to tire easily, the right one more so. So she likes to scoot on her but so she can stop and lay down to rest. One thing that we have been noticing with her scooting is that she is leaning more and more to the left when she scoots. So anyway we will meet with the orthopedic surgeons so they can check things out and to get a new hip harness if she needs it. She is just a tad to big for her newborn one. Anyway we will update when we hear more about this. I just hope its not too serious because I would love for her to walk and be able to run around with her brother and sister.

So just a quick couple of stories. This past week I have been trying to talk to Taveon and he just doesn't listen to me so I keep asking him why he won't listen to me and I ask him to repeat what I say. So when he repeats me he doesn't say what I say he says something that sounds like what I am saying but completely different. Well today at Maggies appt I asked the doctor to check his ears. Of course Taveon has some really bad ear infections. So bad that the doctor said that he can't probably hear well at all. Hmmmm, whoops!! Poor Taveon, I just thought he was acting up. He got a couple of shots of antibiotics and will go back on Saturday for more.

The other story that was pretty cute is while we were at the doctors office Maggie kept hitting her leg which is how she signs dog (she can't snap yet) anyway we couldn't figure out why she kept doing the sign for dog. Then we finally figured out that she did that everytime we said Doctor. So she must have only been hearing the doc part and thought that we were saying dog. So funny she was so persistent with making sure she hit her leg everytime we said it. She is so cute.

Thank you all for keeping Maggie in your thoughts and prayers. We hope everyone has a Merry Christmas and stays in good health.

12/13/2009

2009-12-14T08:24:00.001-08:00

Well I haven't been able to get video of Maggie using her walker, just a few quick photos. I will post those and when I can get some video I will post that as well too. Maggie just likes to chase me without her walker when I try to get video.

So now on to how Maggie is doing. On Thursday Maggie started to act like she was getting sick. By night time she was not doing so well. She was coughing like crazy. Needless to say she was up a lot of the night and when you have other kids in the house you can imagine that they got sick as well. We were up with sick coughing kids all night without a nurse. On Friday Maggie was having trouble waking up. We figured that since she was so sick she needed a day to just rest. So she ended up sleeping for about a total of 21 to 22 hours. Yes, I was very worried about her but I could wake her for a little bit at a time. And I was feeding her through her g-tube to keep her hydrated. I have to be absolute certain that she is very sick around this time of the year before I decide to bring her to the hospital. Its like walking into a warzone when you have a kid like Maggie. So I felt comfortable watching her and keeping her on oxygen or the vent or both. I'm glad I listened to my gut and took care of her at home. The next day she was really fussy but awake and doing better and today she is doing even better. Her lungs are sounding okay for now just the normal that they always sound so I am confident that she is going to be just fine and we won't have to worry about picking something else up in the ER for now.

Tomorrow Maggie will be having an EEG done. They are fairly certain that she is probably having seizures. Another thing that I think I mentioned earlier is that she has some breath holding spells. The neurologist thinks that Maggie might have a blood disorder because her last labs having something very abnormal on it. So we will be scheduled to see a hematologist asap. She thinks that these possible seizures and breath holding spells could be related to this possible blood disorder. So we will see. I try not to get too excited about progress foward just in case it really isn't anything. So I will stay calm until we know more about this stuff that she is talking about. I really like her neurologist because if she sees any little or big thing she doesn't try to catagorize Maggie she takes each thing serious and as a potential problem or clue for Maggie.

Please keep Maggie in your prayers as we wait to see if we may have a clue to what could be wrong with her. We appreciate everyone so much!!

12/8/2009

2009-12-11T09:54:00.000-08:00

Well Maggie got a walker to try out for a while. It is a bit big for her but its the smallest one that they have right now. We will meet with a company that may be able to either find her a smaller one or make a custom one. The one she is using now is a crocodile gait trainer. The smallest one of the those. She seems to like it a lot so far. She likes being a big girl like her brother and sister. I will have to take some pics of it. Its actually quite funny to see her using it because she looks like a little baby not a toddler. She is just so tiny. I'm sure people would think we are crazy for getting a walker so our "six month old" can walk. Thats the age we get when people try and guess her age but we have recently been hearing eight and nine months now so that is encouraging. One problem we have been having with her walking or standing for long periods is that her legs and feet turn really red and swell up so we will just watch this until our next appt.

Maggie has also been having a lot of trouble at night. Like I mentioned on the last post, things are crazy with the vent and off. It seems to me like it is getting even worse. The other night she stopped breathing for around a minute while the nurse watched to see if she would start to breathe again on her own. She didn't, so the nurse had to actually wake her and move her around to get her to start breathing again on her own. That is pretty scary. She has been doing this for a while now so clearly it is not going to get better on its own. We will see neurology on Thursday so hopefully she can direct us as to where to go from there. I'm pretty sure we will need to have another scan of her brain to see if her chiari is getting worse. Until then we watch her very closely especially while napping and sleeping at night.

Her feeds are still weird. As long as we don't give her a lot of calories she can get it through her intestines a little faster. But if we add more calories she cannot get them to move. We are still experimenting with different things and we are hoping to get a second opinion. We would like to get back to Boston, where they already know her. However we do have a couple of other hospitals on our list to possibly check out. If anyone knows of a really good GI doctor let me know. And we may need a really good neurosergeon if this is central apnea and is caused by her chiari. So if anyone has any ideas that would be great. Preferably if there are both of those doctors at the same place. We want to try and find the best. We are willing to do what we need to for her.

We will keep you posted with how things go at her appts. Thank you for keeping Maggie in your thoughts.

12/5/2009

2009-12-07T11:22:00.000-08:00

Well so far things with Maggie are still the same. She is still having trouble digesting food. I have talked with the GI doctor about this and he doesn't know what else to do. He was thinking that we should have her now get a GJ-tube. Its like the NJ that she had before but when they put her g-tube in she was too little for the GJ. So now he thinks that she might be big enough to get one. However Sean and I know that the NJ that she had before did not work that well because she would reflux out of her intestine and into her stomach. When I reminded the doctor of this he agreed that it probably would not do the job. We will keep the option open for the future though. He basically told me that I am going to have to experiment with things to see if we can get something to work otherwise he doesn't know what else to do with this pseudo obstruction. He said that he has a few patients with this problem and some can outgrow it while others are TPN depent for life. So we are hoping for the first. Time will tell. We are not going to jump into TPN just yet though. We want to give it a couple more weeks to see how she does.

So another thing that Maggie has been having trouble with is while she is sleeping. We are still using the ventilator if she will tolerate it. She has been having some trouble with it lately but we were not able to get her sleep study because of all the problems she has been having lately. So she ends up having troubles while she is on it and while she is off it. If she is not on it she has been dropping her sats, having maybe some sort of central apnea. It is starting to happen more than it use to. So now we need to set up another appt to have a sleep study to see what is going on.

Maggie has been doing pretty good with pulling herself up on things and standing. She has been moving her feet a little too. It is so nice to see her doing this, finally. Anyone who knows Maggie knows that she has petite features so this makes balancing on her feet very difficult. We will be trying her with a walker soon but they are pretty sure she is too short for one. Maggie has the same size feet as my friends baby that is seven weeks old. So that kind of gives you an idea of how little they are. She is also very short so that is why she looks chubby. She hasn't gained anything since her last stay in the hospital. So anyway I hope she will be able to walk with her tiny feet. Her leg braces seem to help and she doesn't mind them so that has been nice.

I put some video on my other blog of Maggie doing some signs. I will put pics on here since I can't ad video. She is getting so good at them. I know the doctors won't be too happy to see her eating and drinking since she aspirates but we can't help it. She totally freaks out and wants it soooo badly. She still has trouble with anything under stage two in her mouth. She isn't really sure what to do with it. But things like crackers she does pretty good with. I really hope her next chest x-ray looks okay. She is also getting a cold or something so we will have to see how she does in the next couple of days. Some of the signs she just does her best since she can't quite do them the right way yet. Hope you enjoy!

11/29/2009

2009-12-02T09:36:00.001-08:00

We are back! Okay we didn't really go out of town or anything for the holiday but we are back to update the blog settling down from a busy, exciting weekend. We had Thanksgiving with my family and it was a lot of fun. My sisters and brother and their families were there except we missed my sister Melanie and her husband. Maggie was so exhausted even before dinner started. But she still enjoyed it a lot. It is so nice to get together with everyone and all the kids and none of them are afraid of Maggie. All of her cousins just want her to join in with everything they do. Its so cute! They get really excited for her if she does something like stand against the table. I love that these little kids are just so sweet to Maggie and pray for her all the time.

Anyway back to the medical stuff. Since getting the new g-tube placed, there hasn't been a huge difference. Really she still is having the same problems as she did before. So I guess now we will wait and see if she can get enough food through to make her grow. She will be weighed on Tuesday at her cardiology appt. Yes Maggie still has bradycardia. I know we don't talk about it as much anymore because we just consider it normal for Maggie. So we will let you know how that appt goes as well.

We hope everyone had a great Thanksgiving!! I will try to get some pics up soon!