4/1/11

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!!