Sunday, January 27, 2008

Robert and biotin

We upped Robert's biotin dose yesterday.  I'm still anxious about hoping too much, but he continues to be able to do small things that he hasn't been able to do for a long time.  It's amazing to me how much he had declined physically in the last year or so--over the last 6-12 months, his ability even to raise one hand for 'yes' and one for 'no' had diminished significantly.  He was getting to the point where he was nearly locked in entirely--just some gross motor movements with his whole arm, the ability to step if supported, but even that was breaking down--he'd initiate a step or two, and then stop, and need a push on the hip to get started again.  And it would go on like that

There is, as yet, no dramatic transformation, but there are so many little things:

He rolled over on the bed, completely, yesterday.

Roger held his infant cousin in his lap today, and Robert curved both arms around her body in the proper posture for holding her.

Tonight, he reached forward very slightly to grab a spoon we held out to him (it was a little difficult for him), and he then raised it repeatedly to softly hit the plate in front of him (I was holding him in my lap)--his repeat rate has always been poor, but he was able to keep doing it, including reaching his hand up fairly high.

When we help him walk, he picks up his knees and steps easily.

His hands are often open, rather than curled, and he rests them in his lap, at midline.

He tries to grab (and often does) the syringes and tubing while he's being fed.

He made consonant sounds the other day.

His face looks different--as though there's a little more muscle control--his expressions look a little more defined.

His overall tone continues, often, to be normative.

Apparently, biotin is an essential vitamin for the metabolism of fats, which would make some sense in terms of brain tissue breaking down.  But I don't really know all that much about it.  At this point, if Robert can stabilize, or regain any function, no matter how small, it would represent an enormous improvement in his life.  Anything.

Several years ago, Roger and I saw the not-so-great Tom Cruise movie, Vanilla Sky, about a man who was, I think, disfigured, and then seemingly restored to his old body.  Despite the general awfulness of the movie, it was an incredibly moving thing to watch, and to wonder what life would be like if the world could be restored as it was.  

I'm not going to think ahead, though, or count on anything.  I'm just going to take each day as it comes, and not think backwards or ahead.  Anything he could regain, even the ability to pick something up, would be incredible.

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