Friday, November 25, 2011
Happiness is a warm puppy
Yes, another picture of the dog.... but actually Pads legs are the shapes underneath the duvet Jack has snuggled into. With nothing to get up for, he's liable to stay put until the afternoon, and who can blame him. Tonight he's in bed early, whacked from the day's activity and saving his energy for the baptism service tomorrow afternoon. That is scheduled for a live broadcast on the Internet.
To avoid the problems of a few weeks ago, the dietitian suggested he had a litre bottle of the 'with fibre' feed (instead of 500ml of with and 500ml without). This also that means we don't have to disturb him to swap the bottle over first thing in the morning.
But some days are busy enough, with visits from the tutor and the play therapist, although he was too worn out by those to also go out to the chiropractor this week (who is still giving him free sessions). He spent last night in Auntie Ruth's again, which he greatly enjoys. He assured us that it wasn't just for her i-Pad, as there's a charity that wants to get him one. With the loss of dexterity in his left hand and some difficulties with his vision, an i-Pad will restore his ability to use the Internet, where a traditional computer has become just too difficult to operate.
After the clinic last Friday, we felt like we wanted to go back for another chat with our consultant and they agreed to meet on Monday at 4pm, which was very accommodating. Pads doesn't enjoy being talked about much, quite happy to leave it to us to talk things over. We do need to read the signs better so that, once the medical observations have been done and he's had a chance to ask questions, he can leave us to chat further. Communicating that or even finding the right words to order can be difficult so we need to look at using signals instead of words. Even without Pads in the room on Monday, the consultant was still being quite positive about the slowness of his decline. Without a steepling decline in his faculties between visits (2 months apart), it can be hard to discern what is 'accomodation' (him learning to cope with the state of his disability) and genuine loss of function. I also got a chance to see the pictures of the last two scans, showing the discernible advance of the tumour. With this much abnormal activity, the brain has a hard time re-routing messages and instructions and this could account for various symptoms, including the way that Pads feels hot and he's sometimes ill without warning. There are no plans to scan again for a while unless something happened that really demanded it. It's not a particularly pleasant procedure and there's not much to be gained at this stage.