Vrooom Vroom

The occupational therapist (works on arms and hands) was as impressed as I hoped she would be with Jon's range of motion in his arms when she came yesterday. If he has his hand splints on, which come out about a half inch past his fingers, he can rub the side of his nose and his chin. When the physical therapist came in (works on legs and feet) Jon stretched out his arms and held them like he was holding onto the handlebars of his bike, "squeezed" his hands as best he could and went "vroom, vroom." We all got a big chuckle out of that. They helped him up to sit on the side of the bed so he could practice balancing himself. They showed him how to use the bed railing to help. He was able to sit for 10-12 minutes before getting tired. They want to get him downstairs so he can be put on the tilt board and get better exercise of his arms--there's just so few things you can do when you have bed supports in your way.

He continues to try to feed himself. He takes as many bites by himself as he can manage and then whoever is with him feeds him the rest. His appetite is better or his resistance is slacking off--whichever it is he's eating more. It's still not good but better.

These are things that staff doesn't see and don't realize what a big deal it is. Yesterday was the first meeting we've had with representatives of all the facets of services. Their big complaint was his lack of motivation and lack of sleep. We've always assumed a lot of his sleep problems with whatever facility we were in was because he has always preferred third shift and is somewhat a night owl. They have thought it was anxiousness and tried medicating him....When I checked with Jon about his sleep habits it turns out he never really slept more than 4 -5 hours at a time normally. So when I leave him at 9 and he's pretty sleepy then of course he's going to be awake about 2-3 in the morning and they don't know what to do with him!

Must run..I'm late getting off to the hospital.
Talk some more later.