Tuesday, September 1, 2009

So I am not crazy....

So all along I have thought that I was crazy, well I knew that I wasn’t but I wondered if Zach’s condition was in my head. I heard people saying so many things that I doubted if I was doing the right thing. I felt (feel) led to do all the things that we are doing: OT, ST, FT, PT, and play therapy. I saw him having trouble walking, not saying words appropriately and all that, be tired all the time, running low grade fevers. However, when you hear other things from people it makes you wonder if you just missed the boat somehow. The other day I read a status update off of Facebook and I started bawling, I mean I was delighted about the growth and the positive things that were in the status but I was so sad that at 6 months things her little one was weighing what he was and doing so well (please don’t read that I wanted him to be doing poorly) and was close to outdoing Zach on several things. I know that Zach is different and that God blesses him differently but that was the 1st time that I saw something and it hit me that Zach has his own timeline that is going to be different from everyone else’s.

This week as been hard…. well this past week I should say. We had something that we were doing for Zach everyday so we were busy a lot. We had a great PT session at the park, a great ST session and FT session, and a wonderful Music Playdate as well as a Play therapy session. We were blessed by the Starlight Foundation to go to a Falcon’s Game, taking the boys with us. They each got their own shirt and their own seat. It was AWESOME. However, Zach has been paying for it every sense. He screamed all night Sunday night, he has decreased bowel sounds and he was miserable. Today he has a fever, all from muscle fatigue. He is fighting to put his braces on because they touch his legs; he is fighting to change clothes because it means he has to move to help me put them on. He isn’t able to sign because he is tired. Last night he was so tired he couldn’t eat or even cry. Ever been so tired that you couldn’t communicate because it took too much energy?

So going back to me thinking that I was crazy… I have been told for so long that I haven’t been doing enough for Zach. That I am not going to the right doctors or getting the right tests done cause if it was their child they would know and they would demand for it to be done. It is hard to know that people think that you aren’t taking care of your son. This year we got referred to a doctor that was our last chance, he made sure that we knew that we were doing what we needed to for Zach and that we were doing everything right, which was nice to hear. He also made sure to let me know that it wasn’t my fault and that we were doing all the things that he would be telling us do. Roughly 11 weeks ago we took Zach to get some tests run, they did a number of things like taking blood, skin samples, spinal fluid and muscle tissue samples and they were running things on them. We finally got preliminary results that show that Zach has defects in the mitochondrial (complex I and complex III) as well as a few other abnormal things. They are still doing more tests but the short and easy answer is…. we have an answer…. Zach has MITO.

We don’t know what that means for him, it will be something that we deal with all the time and it is something that we will be learning how to handle for the rest of his life but we have an answer. He has been on one of the medications given to help this for about 10 weeks and it has been helping so much, I can’t begin to even explain how much it has helped. There is another one that they want him to start on and it is something that we are going to have to fight to get covered or we are going to have to pay out of pocket for. It is expensive and it is something that is supposed to help and the docs want him to be on it. So after Labor Day we will be finding out what we need to do to get it covered for Zach. I also need to set up appointments and try to figure out what things we need to do now. We don’t know what it means for school or anything like that but I feel like the world has been lifted off my shoulders and that I am not crazy and I am not a bad mom.


  1. I was watching a show on Discovery Health the other day and they were profiling a little boy with a mysterious illness and all along I thought "he reminds me of Zach". And bingo--mitochonrial disease! I'm glad you have an answer!

  2. I am so glad you are getting answers! I hope you can get approved for this new med soon and it will help him even more. And dont ever doubt you are a GREAT Mom!!!

  3. Jen,
    I am glad that you have been reassured that you are doing all of the right things. I can't imagine being made to feel bad by others when you are going through something like this. And what a huge accomplishment it is to have some answers and find a medication that helps! I hope that more positive things start to develop very soon, and that you find other ways to improve Zach's condition! (((HUGS)))