Robert seems excited about eating. This is the most heartening news I've had for a while. We went to the feeding clinic at Kennedy Krieger yesterday, and, while they weren't particularly optimistic about his chances of eating again, they were certainly willing to give us guidance and a series of steps to take. And Robert seems to feel he has a project in front of him.
So they taught us a few basic mouth stretches, to get his muscles looser. We have a special spoon he needs to let someone place in his mouth. And we need to work toward his eventually being able to swallow an ounce of something--if he can do that, he can do a swallowing study, which will give us more information about his potential for eating.
At any rate, they seemed to think we could move slowly toward some type of eating for pleasure--in Robert's case, that means eating enough to taste something. It doesn't look as though he'll ever be able to ingest enough by mouth to even have the eating be a source of calories. This is disheartening, but I figure if he can eat enough just to get different tastes in his mouth, well, then he has something.
I worry that he won't know pleasure enough. Eating is pleasure. For Robert, eating is hard work. And frightening. With the constant reflux, the gagging, the unknown muscle condition, he's certainly had enough to be fearful about.
Lately, though, he responds so well to explanation--we explain things to him in advance now, in just about every situation. And he's doing much better with all kinds of social events and situations. Of course he would have a lot to be fearful about: he can't talk, he can't move on his own, perhaps he isn't quite sure what certain noises mean because he doesn't see them get made and no one explains them to him.
But I feel as though a chord has been touched in this child. Some shift has happened in him--he's moving from reactive to proactive with his world. He's getting a taste for goals, for things he wants to do. And he wants to try eating. And he's willing to try hard with the stretches and the exercises. I ask him, and he keeps raising his 'yes' hand. And it's awfully scary for him, but he's with the program.