Wednesday, July 16

There's progress and then there's what Medicare recognizes as progress, which is also known as "functional progress". Tommy is definitely making progress--it's evident every day. Example: He surprised a nurse's aide yesterday when he read her name on her name tag. "Stephanie," he said to her, as she helped prepare him for bed. "Did you read that off my name tag?" she asked him incredulously. He nodded. He's been reading the signatures of his friends when we go through the cards he's received, too. But the functional progress is coming more slowly--for example, his right leg still isn't kicking in, which means he is a long way from standing or walking. And, he still hasn't demonstrated to the speech therapist that he can speak more than the most rudimentary of words. It's frustrating to me, because at times he comes out with entire sentences that make perfect sense and that use the same vocabulary he's always had. It's hard to tell whether his long silences when he says only "Mm-hum" and "Mm-uh" are because he has genuine lapses in his ability to speak, or because he's rebelling against constantly being told to speak, or a combination of both (I suspect it's the latter). One area of definite functional progress is eating--he now eats with a fork, from start of the meal to finish, and holds his cup to drink. It's clear to those of us who are close to Tommy that inside that noggin it's the same old Tommy Long, and that's the most important thing, and very gratifying.