February 2011 Update
S Clay has been home now for 15 months. Last Fall, he got a headache, which alarmed me enough to take him to Urgent Care at UCSF. They did a new CT Scan and told us they thought he was “profoundly worse”. We spent another 10 hours in the ER while they did a spinal tap and more tests, to see if he had an infection in his brain. These tests came back negative at 3:30am, and we drove home in the quiet to find a parking place right in front of the house. Oh joy! But the negative diagnosis from the Scan wasn’t really news to me, as during the Summer I noticed he spent less and less time drawing, and they were becoming uncharacteristically simple. He is now no longer able to draw, and has slowly become more and more confused with the little things in life. It is hard for him to communicate much of the time, as his aphasia has increased, and he has great difficulty expressing himself. I still have to “put words in his mouth” when he attempts to ask a question. He is rarely able to find the words. I cannot imagine the frustration he must be feeling on a regular basis. I try to keep him cheery and engaged as much as I can in what has become a rather isolated life for both of us.
I wish to thank everyone who has sent donations to his Trust, and to those who have left comments and sent emails to us. I read everything to him, which is something he really does enjoy.