Nothing particularly dramatic has happened since the last time I gave a Robert update. He continues to have good movement with his arms, his hands continue to be open, his stepping is good. The big things are this persistent "scatter," what developmental types call a variety of higher level abilities that seem to come and go. He's been making a wider variety of vocalizations, for instance, including making some sounds that bear some resemblance to words, or sounds he has not much made recently.
I think the biggest thing in many ways is a definitively improved digestive system. It is hard to explain what a big deal this is. Robert was finally put on tube feeding 9 nine years ago because the gas and nausea he often experienced combined with greater difficulty with mastication meant that that was about all that we could do. Tube feeding has kept him alive, but even so, it's been incredibly difficult. At one point 7 or so years ago we thought we'd hit the key when we switched from a milk-based formula to a soy-based formula, but that didn't stop the intermittent vomiting episodes. At the point where we switched, he really couldn't seem to keep anything down. But even on soy and very powerful g/i reflux medications, he continued to have difficulty with tube feeding, often for days at a time, for no particular reason. If this illness he has has anything to do with difficulty digesting fats, this issue would make sense, as milk has a different kind of fat than that added to soy formulas.
He looks good. His face looks good. He seems in a good mood.
We go up to 20 mg total biotin per day tomorrow, an increase of 5 mg. So we'll see. There's a lot of damage--I don't know how much recovery is possible, or whether it might happen but be slow. Or if this is even going to be the diagnosis we're at this point hoping for.
I want to write more about my reactions to illness, but another time. Right now, I've been sick, Robert is sick, and Roger seems to be coming down with it.