Day +106

OK...here is a bit of a catch up. It is strange but lovely to be home. Jesse does very little in the day mainly because the weather has been so rubbish since we came back. There isn't anywhere we can go if it is cold or wet, but he is very contented with playing on the computer, doing the odd jigsaw or watching telly. Bernie has been better, but he is still quite a handful; very boisterous and prone to biting. We have to watch him with Jesse as he is very rough. He has been ill again with a cough and now an eye infection. We did bloods last week for him, the first counts were good so now we are waiting for Dr David Webb, consultant haematologist at GOSH, to look at the blood film. I am pretty certain he will see if there is anything abnormal...I'll keep you posted.

Jesse looks fantastic! The most marked difference is his skin and eye colour, both are so much darker. Before transplant his skin was the colour of milk and his eyes a pale, pale blue! He is getting stronger by the day. He went for a long walk in the park yesterday and the day before. He still needs to crawl up and down the stairs but every day he can do a bit more. He has had one session of physio and is doing his exercises. I make sure he does a bit of reading every day and he does his hand exercises with the theraputty daily too. It is amazing that in a few weeks he has managed to grow back some of the muscle he is missing below his thumb (thena eminence if you want the medical name)so his hands look almost normal. I think he'll be starting some home tuition next week, sadly his old tutor, Annie, can't come back, but I'm sure he'll do well with someone else. He learnt so much with the lovely Louise at GOSH I'm really keen for him to continue that progress. Paul Veys says he may well be ready to start school again by September!

We came back to GOSH a week last Wednesday,he had been pooing so much that I thought they might readmit us, but actually they were very relaxed. His counts were so good I stopped worrying too much. I had been getting him to drink lots and had tried him on some other bland foods like corn spaghetti and rice crispbreads. So I stopped worrying about replacing all his lost fluids and went back to the rice diet and slowly but surely his poo levels are coming down. Each night he has 600ml of a complete elemental feed and I know that it will provide him with everything he needs so it is easier to relax...They were so happy with him they said we could come back in two weeks! So we'll be off next Wednesday to see what they think of his progress. Last Friday Jesse woke up crying, he had a very sore throat. I went into another panic but he didn't spike a temperature so I was able to give him some painkillers. By the next day he was much better, just rather snotty. It was amazing to have him ill but not to need to go to hospital for the inevitable iv antibiotics! He just had a cold! It may seem like a small thing but for us it was a miracle!

I am managing to do some work, as is Derek, but is very awkward because one of us has to be with Jesse all the time. We are going to try and find a student to stay with Jesse for a few hours in the week to free us up a bit...Our new house is now a derelict building site and needs lots of attention and focus, so that is very stressful. It is riddled with dry rot so the builders are taking 3 of the 4 bay windows out and replacing all the frames and several joists too. I'm trying not to worry too much about it, at least we are comfortable in the rented house and the new house will be lovely when it is eventually finished.

As I said in yesterday's blog, we had Shambala come and stay with us for 5 days. She is having a difficult time at the moment with the swelling on her leg. We have been doing everything we can to get a proper diagnosis, she saw Dr Anne Davidson here in Brighton and has now been referred to the Royal National Orthopaedic Hospital in Stanmore. They are looking at her case today...obviously this has been a big worry for us all...

I must stop now because I am planning to spend the day at the house getting Bernie's room ready for Albie to decorate...I'll update next week when we've been back to GOSH. We are looking forward to catching up with everyone there,
lots of love
Claudia