Monday, September 17, 2012

Mito Awareness-Day 2

I thought I'd just move my "awareness" info over to the blog and then link to FaceBook. I just need more room to talk than FB will allow!

Mitochondria are responsible for making the energy our bodies need to develop and function. Asa's mitochondria don't make enough energy so some of his systems don't work too well. Keep in mind that mito affects everyone differently. No two cases are exactly the same. I'm just sharing our experiences with Asa and his mito.

You'd probably notice that his muscles don't work well before you noticed anything else. His floppiness was our first clue something was wrong. Right after he was born, he spent 5 days in the NICU learning to suck and it was noted that he was hypotonic or floppy. His muscles are like rubber bands that are stretched out and loose. He has muscles but it take much for effort to flex and release them like he needs to in order to function "normally".

These floppy muscles don't just affect the big things like walking but also his biting and chewing, talking, smiling, holding a crayon, tying a shoe, using sign language, and so many other things. He didn't get head control until after he was 1, didn't sit without support until he was 15 months old, and couldn't get himself into sitting until much, much later. He is almost 5 now and can't crawl but learned how to walk 2 months ago at 4 years and 9 months!!! Even now his walk isn't "normal" but he has to tighten up his muscles so his brain can tell them how to move. This creates a kind of Frankenstein walk that too adorable! And when he sits without support he still tends to stack to support himself. The closest thing I think to describe this is like us sitting on a bleacher for an entire baseball game or a stool with no support for a long period of time. It tires him out!

Because our GI system is all about muscle control, Asa also suffers from GERD, dysmotility, constipation and diarrhea. Another important organ is essentially and muscle too and that is the heart. Asa heart is great but we get it checked out every year or two because he is at a higher risk for heart issues.

Tomorrow, we'll tackle how mito affects his brain.

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