Friday was the full review meeting with the PCT regarding Chris’ progress. I posted the full transcript of his SALT report. I think undoubtedly the greatest changes have been on the awareness and emotionality as fully described in his report. Unfortunately the same can not be said regarding his physical abilities / state. Chris currently receives PT five times a week; he goes on the tilt table and has stretches. Chris also works on his seating balance using some of the Bobath techniques we saw during his assessment. Nevertheless, there are no gains on his physical abilities and the PT seems just to be maintaining his current condition.

The fact is that as a result of his immobility and very high tone and spasticity, Chris has over the last 3 years slowly deteriorated as it would be expected given his condition. The PT tries to minimize the speed of this deterioration and/or maintain somehow his current condition. But absolutely no gains have been made, on the contrary, overall in the last three years, his physical condition only got worse and worse.

During my visit yesterday with my mom and Gabriel, I noticed Chris’ tone is the highest since returning from China and it is in fact back to square zero to the same level pre-stem cell. I can not move his left arm anymore so high his resistance and tone. I used to refer to this arm as the immovable one – well, its back to that level. It is so frustrating because he was doing great just about 3 months ago. This is also despite having received Botox last week on his arms.

Just when I was also feeling so much better about Chris finally looking and feeling “happy” and at peace, he was extremely distressed yesterday with some pain and/or discomfort. He was distressed, shaking his head right/ left and just trembling and getting completely red on his face. This would come and go and it took me 20 minutes to even be able to find a nurse or carer to help. We asked the staff – when we found them – to place Chris back on his bed.

Also it has been decided with the PCT that Chris’ daily 6 hours of one-on-one care will be discontinued as of tomorrow Monday December 10, 2007. But it has been decided that someone at the Jacob will put an activity plan for Chris in which he will be able to go to the Gardens Centre (building across) to participate in the various activities for youth that takes place over there. This should provide more opportunities for interaction/ socializing.

There are lots of things to be followed up on – including some very exciting plans - but I will post and update as things gets firmer.