How he really is doing

Sorry we are being so hard to reach, but we are here and we are fine
Friday went well, he had his vinchristin and they were happy with his blood results, just tested the numbers of different blood cells. Took a bit longer than expected, but Rafiki was quite happy to hop back into his old bed and watch his personal TV again

Back here it is taking some getting used to and organised for................. the result is that I am at it without much chance of a break, there is no routine yet and I dont know what will happen next... food pooh walk grumpy session sleep not sleep etc, so effectively I am 'on' 24 hrs, hence no e mail etc.

I have to try to sleep when he sleeps or I will be in trouble later. The new situation sets up new challenges, for example the kids want to play with him a lot, but he can only deal with so much, needs his space or he becomes very cross, so even if they are playing with him, I have to watch him to know when to get him his space, thats just one thing.

So it will take a while to even all these things out, so in the meantime I am having to do a lot more attention than at the hospital where the parameters were less. He is doing well, all the usual things that are difficult will continue to bother him, difficulty poohing as fast as he pumps it in, the mood swings, not being able to express what is bothering him, being afraid of being left by me, having to eat so much etc

So we are both pretty tired, and a little strung out, but he is still there with a beautiful smile, or a nice comment to lift my heart up when I am feeling exhausted. This afternoon when it was still light we went for a walk, and he pointed up into the cloudy sky and said look look the moon, and sure enough though the clouds and mist was a barely visible moon peeking out. So despite his discomfort he is all there.

Have to sleep, because I know for sure I will be awoken soon to adjust his blankets, at his request , or change a full nappy after a difficult delivery, that I will have to sit with him to give him moral support, but not touch or talk, as he stands in his bed pushing and pushing to get it out of his sore bum. Then we will have to go through tthe discomfort of a nappy change in the cold nite, all the wiping and cleaning of the generally big mess, will make his eyes water, and his legs will get sore from being lifted to get to his bum, and his new heavy body pulling down on his ankles must hurt.