My heart is so full right now {not unlike my belly from all of this food I've been eating}. Wednesday we had our appointment at the Blue Bird Circle Clinic for Pediatric Neurology so we could finally get an answer - or at least some insight - into Sam's physical struggles. Originally, this appointment was for July, 2013 - yes, you read that right. Fortunately, I had enough sense to call back and see if we could get on the cancellation waiting list for a quicker turn around. He saw 2 doctors, they evaluated Sam extensively, drew blood and then in walked the big neuro doctor. I was starting to hyperventilate, until he said those magic words: "Sam's physical limitations are not neurological. AT ALL" After that we stopped listening and I started crying. We had to have the doctor repeat everything else - thank God Nick was there to ask again b/c I was a hot mess. It was such a relief to hear him say that. They diagnosed Muscular Myopathy - which is just a fancy way of saying muscle weakness. Course of action is PT/OT {which we've been doing for over 6 months}. A big part of me knew that it was probably nothing - but in the back of my mind there was a small part that thought perhaps this was Muscular Dystrophy or ALS or PLS or a tumor {just a bit of advice: stay off WebMD if you're concerned about anything health related}. While we were there and because it's basically protocol, they drew some blood to test his enzymes and do some genetic testing to see if this is something he could possibly pass on to his future children and grandchildren. And if it is, there's a likelihood that Caroline could possibly be a carrier as well. Even if it is, this is very minor and very treatable without medication or surgery.
While in the clinic all morning on Wednesday, we encountered many children with huge fights ahead of them. Children and babies who were SO sick and traveled from all over the world to be at TCH. Nick and I both agreed that no matter what Sam's outcome was on Wednesday, it was in no way as severe as what the other families there were experiencing. Puts things in perspective...
Thanksgiving has a truly different meaning after Wednesday.
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