Monday, August 31, 2009

8/31 Chuck looked at the blog today

We finally got in front of a computer today and read a number of the posts from Chuck's friends. He appeared very interested and acknowledged many people's names. He especially responded to one from his brother Bill and one from nephew Danny. When I asked him what he'd like to say to people he said, "I would like to tell..... " and then he stopped. He starts out many sentences clearly like this, and we lean in like an oracle is about to speak, and then it tends to fall off. "I would like Auburn to......" we lean in, "....rrrr....rrr...rrrr.... what is is right and what is wrong."

Today, he got into a declamation mode. He walked, pointed at the bulletin board, spoke very emphatically and said, "wwww.....wwwww......rrrrrrr......system! Wouldn't even matter!" Then he collapsed on the bed, looked at my mock-shocked expression and cracked up. I put the phone to his ear with Becky. "Hi Becky" he said. How are you? she asked. "Fine. Bye."

We had a rough morning. Both of us were dragging tail. Speech therapist and doctor both concerned by Chuck's lethargy. By afternoon, we found a way to joke around and laugh again. We're going to experiment some more with medication because Chuck was more diverse in his expressions 8-9 days ago than he is now. One interpretation is that he's simply so physically active that he can't do verbal expression as well. Another interpretation is that he might benefit from a medication that was removed around the time he was speaking more clearly or that the stuff they're using for his sleeping is making him more bleary. Yet another interpretation is that he's simply avoiding the frustration of not being able to communicate successfully and opting for silence.

This morning he brushed his teeth and did some self-dressing and self-care. This afternoon, lying down on the bed, he kicked off his shoes using his feet without untying them.

I made it to the Y and am home doing laundry, collecting mail, letting my soul catch up to my body. Nice visit from Jean tonight brainstorming ways to supplement speech therapy now and later.

I've found a diverse and amazing team of people to help advise me on how to best raise money for Chuck's Benefit Fund. The trick now will be to get them all in one spot for a brainstorming meeting. My thought now is to have the meeting in Chuck's presence at Edwin Shaw. It won't be long before he'll be able to advise us also.

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