3/25/2011

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.