Wednesday, February 26, 2014

I don't think I can fix this

Well I had a really funny post I was going to put out there today but I just can't. Today was a visit to the muscle doctor. Noelie has what they call "torticollis". Basically, his muscles are tight, especially in his neck. This causes him to favor looking to the right. We have worked with him and he looks to the middle more now. He can almost look all the way to the left, if he wants to. He screams if you force him too.

We had talked about doing botox injections to help loosen his neck and get him to look to the left more. While at the doctors office we talked about it again. They saw that back in September he had an xray done to check the shunt placement, and the tech made a side note that he thought 2 vertebrate were fused together. WHAT! Why were we not told about this?

I am clearly upset by this! I was hoping that his movement was something we could fix. We have a CT scan scheduled to find out more but I don't think I can fix this. As a parent, you just want to make it better. To give your child the best life you can. There is a lot of things I have learned to deal with. This is the way it is and I can't fix it. His brain size, the fact that I am a carrier of the gene, and his low chances of walking, talking, getting out of diapers, or getting rid of his g-tube. I have learned to except most of this. We are trying to change some of those things, like him walking and getting rid of the g-tube. I realize that if it does happen it may take years. But his neck movement? What? I really thought we could fix this.

Ok so maybe this is something I will also have to except as fact. My big question is why was this not mentioned earlier? I really can't complain much about the clinic, hospital, and doctors that we have come to know and trust, but I thought someone would have seen it and mentioned it. I am nervous about the scan. I want to fix this, but I (in my heart) don't thing I can. Tonight I have a heavy heart knowing that, as a mom, I can't make it better. I have peace when I look at his smile. It is almost as if he is saying "I am good mom. I am ok. You are doing great. I love you." I love his smile!

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