What's ironic in all of this is while Mason is doing much better (seeming stronger, eating more by mouth, seizure free since June), his big brother is beginning to concern us more.
|Having fun at "the big gym" (PT/OT)|
So clearly we do have some questions about all this. Why does Micah have these muscle issues? We know he shares the deletion w/ Mason and I. But we have been told Mason's muscle problems are due to his brain malformation. Does Micah have the same problem but milder? Or does he have another cause for it? (IE, is it related to his frequent infections? Does he have an autoimmune condition? A nerve problem (he goes numb a lot, shaking his hands when they are "tired")? Does he have a myopathy or some other explanation for his weakness and tone? Is it due to his thyroid problem? (We know that can cause muscle disease if not well controlled, but it's rare in kids, and usually affects just the limbs not the trunk so much, and Micah's thyroid levels have supposedly normalized now). Is it treatable and will it get better, stay the same or get worse? How does it relate to Mason? Does Mason have another issue with his muscles besides his brain malformation? God knows. I don't know if NIH will or not but we're thankful for the open door to find out what they are able to tell us. Pray we'll have strength do endure that week of testing (they warn us it will be exhausting and difficult) and whatever new information we obtain from the trip.
"Strength for today, and bright hope for tomorrow...blessings all mine, and ten thousand beside..."