Sienna had ballet this morning, this was her second class. She has been asking everyday for the last year when does she get to do ballet. Now she asks everyday, when do I get my recital? She is so cute. After ballet we went to the park for a picnic. Not sure why but John got sick, so we had to pack it up and leave. Thanks Kara, for keeping Sienna so that she didn't have to quickly leave to get John home.
I feel like I have to touch again on why I am leaning in the direction of Mitochondrial Disease. We have been through a lot to get to here, and maybe this can help answer some of your questions. I am sure there are a lot out there. I feel that some people think I am giving up hope, and turning to Mito just so that I can have answers. First, I will NEVER give up hope! Diagnosed or not I will always have hope. I will never give up, and if we get through all of this and he happens to out grow it, then I will forever believe in miracles, and hey, maybe I'll even start going to church!!! When John was born I had this crazy gut feeling that something wasn't right. He came out and was barely screaming? Then I had to believe that just because he didn't scream as loud as his sister (which is very hard to compete with) doesn't mean that something is wrong. He didn't do good on his first apgar test, but the second he passed. So then I felt better. Then he quit breastfeeding, and again I had this gut feeling. Feeding John has never been "right". To explain this without writing everything down is now impossible. Over the last two years, I watch him so closely trying to figure out what is not right. I have done everything there is to do to take care of this kid. I even went through denial, assuming I just have a very sleepy baby, "he's just perfect"!
When I first read about mitochondrial we had just met with the GI doctor. We discussed a g-tube for the first time, and I freaked. I came home and researched. That is when I first read about Mito. When you read about g-tubes you will always find info on Mito. I read a story of a mom with a little boy who had Mito. I swear I could have written the story myself. At least the first half of it. I felt sick, and a couple of weeks after I read this I got the report from the GI doctor. We always get these after our visits, and there is a section that they write about their "impression". There it was at the end .... mitochondrial disease. I would then research every possible diagnosis, and Mito always stuck out. Throughout all of this I would read about all of our possibilities. This was hard, but I needed to educate myself so that when we went back to Children's I could ask the right questions. When all the genetic tests came back and there was nothing genetic they could point to I asked about Mito. The team of Doctors looked at each other in a way that I did not feel good about. Then they talked about the possibility of Mito. We then were sent over to the Metabolic Specialists. It takes months to get an appointment with specialists. Some take 6-7 months. Another reason why I have to stay on top of things.
To make a long story shorter, I have learned that I can either educate myself on something or turn my head and ignore it. I choose to educate myself no matter how ugly it maybe. The reason I am grasping Mito is because there are things I can do that might help my son. It could take 1,2 or even 10 years for an exact diagnosis. For now I can take precautions so that he doesn't get sick, or if he is heat tollerant (which I am starting to believe) then I can try to help keep him comfortable, and I can tell just by looking at him that he is going to start wrenching. I would not know any of this if I did not educate myself. I just want to try to keep him comfortable as best as I can. Whenever John gets sick, he really gets sick. Sienna and I are over it in two days. John has taken 6 weeks just to get over a cold. So hearing that Chicken pox is going around, scares me. Although he is vaccinated, there is no guarantee that he won't get it. His immune system has tested to be fine. We think it is because his body doesn't have the energy to fight. So again I can be cautious and sterilize my surrounding as best as I can without a bubble!
So I hope this answers any of your questions. If this all turns out to be nothing then call me the crazy mom, and we'll throw a party, a big party. I would much rather be crazy then ignore what my child could be suffering through.
Thanks again for everyones support. I know this got long, but sometimes it just feels good to sit down and write about all of this. I appreciate everyone's support, emails, thoughts, prayers, etc. I don't know what I would do without all of you.
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