Daniel is making progress

There is so little written about lissencephaly in medical journals and on the Web that I find myself reading the same passages over and over again. Recently, I re-read the description of the disease on the National Institute of Neurological Disorders & Stroke website. (I won't link to the entry because it's too depressing in general.)

One sentence seemed to stand out from all the negative forecasting: "[Some children] may have near-normal development and intelligence." It's easy to miss this sentence the first time you read the page. Most of the talk is about severe and hopeless cases.

We've been seeing lots of progress with Daniel lately. While he still doesn't possess the physical mobility expected of a 14-month old (no crawling, no standing), he has been doing things that he wasn't doing just a few weeks ago.

Daniel has always been uninterested in holding and grabbing things. But we insist that he holds his own bottle when feeding. (Really, we do! We even say, "Daniel, you have to hold your bottle.") He does it because he likes his milk in the morning, but he would be much happier if one of us were to hold it for him.

On most mornings, we'll set him up in the high chair, prop him up to sit up straight. (He's still naturally slouchy.) Then we position his elbows on the table-tray and position the bottle so gravity and sucking do the work.

All-in-all, Danny does pretty well, but he usually drops the bottle on the table a few times during a feeding.

This morning, however, Daniel dropped the bottle many times. He really seemed to be doing it on purpose, trying to get Lara to hold the bottle for him. After a few too many drops, Lara said, "Alright, Daniel," and stood his bottle upright on the table to indicate that she was through playing his game.

Daniel studied the bottle and then PUSHED it with his hand, sliding it towards Lara -- not to knock it over, but to get Lara to pick it up again so he could drink more! I was elated!

I've also been trying to teach Daniel to high-five, and he's beginning to actually do it when Lara and I prompt him.

Both the occupational and physical therapists are extremely pleased with Daniel's progress. Still there is lots of work to be done.

But perhaps the thing that keeps us so optimistic is Daniel's bright personality. Daniel cries when his sister has to go to school. He laughs at funny songs. He babbles endlessly. He is a delight.

We know that this disease can play out -- even in a mild form -- in a number of ways. His progress may hit a plateau. He may develop some symptoms later. But for now, for me, near-normal is where we're aiming.