The reality is : 99.9 % of the time his eyes are closed and he sleeps, even when sitting up. He shuts down, closes his eyes after a few seconds, when asked to do the therapies. No amount of encouragement or anything really (!!!)can get him to do something that he doesn't want to do. Jason, his nurse and helper (wearing red scrubs) says the best thing to do is to try and distract him towards thinking about something else. Then to retry the shower, the speech therapy etc.
He has made some progress in holding his mouth shut, in holding his head up and ...in feeding himself! That means judging where the plate is, aiming the spoon for his favorite part, mashed potatoes, then getting that up to his mouth, chewed and swallowed. Then reaching for the cup and getting that up to his lips and taking a small sip.
Another positive thing or two: he asked for a pencil and paper and made his first forays in that department. He made little drawing gestures in the air before finding the paper and making a mark or two. Drawing a hesitant line or two. To that end we have gotten him large sharpie markers and a good sketchbook with a hard cover. So that if he asks for that, even in the middle of the night, it is at hand.
His first trys with Hall's CD player also gave him great enjoyment! About the Harry James that he was listening to he said:"Certainly gets you going!"
So we will be including more music in the future. And hopefully trying out the drawing pens!
Mom seems to be doing well. She has really gotten herself organized and has such a circle of folks surrounding her with good steady support! met a young woman R, an Art History major at the college, at the coffee shop where Mom often goes to just get away from it all, to be surrounded with life and lovely faces!
Bruce arrives tonite from Pennsylvania to help them set up the show at the Beach Museum. It's going to be quite a whirlwind.
Lissa (in Manhattan)
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