There is a lot of news to share. The biggest being that William, with a lot of help from Oliver, celebrated his third 'transplant birthday' yesterday.
This has been his best year of health yet so we really had a lot to celebrate. Of course, it's a bitter sweet day as we think of our wonderful donor family and their grief and sadness as they remember their daughter. We got the call to say a donor had been found for William on the evening of 19th November and his transplant took place in the early morning of 20th. This enables us to dedicate 19th to remembering and giving thanks for that special gift before we celebrate William's life on 20th.
Every year, we light a candle for William's donor. This candle is also lit on William's birthday and at Christmas and other special occasions where we feel we should commemorate the girl and her family who made it possible for William to be alive.
One of the things I was really celebrating this year is that William is eating! Crisps with every meal and a very restricted diet but eating anything is a huge achievement. We are about to start working with a dietician who specialises in Autism to get his diet more varied but he has enough calories to mean he can wean off his overnight feed and is down to just two nights on feed now. He's off to Birmingham Children's Hospital for his annual post-transplant review in a couple of weeks so, you never know, they could say he can drop the last two feeds by Christmas. Thankfully, he needs the crisps to replace the salt content in his stoma output so the transplant dietician is happy for him to eat four bags a day!
William is keen to try new foods and does give them a go but then doesn't like the texture in his mouth. He tried the cakes his sisters made him and some peanuts and pringles at his special transplant birthday party lunch. He didn't like them though and went back to his Walker's salt and vinegar crisps, strawberry squashem yogurt, gingerbread biscuit and vanilla milkshake that he as at every single meal! Snacks are milkshake and half a packet of crisps.
We all enjoyed celebrating together. There is always a lot to talk about and remember about that day three years ago too. We had a real roller coaster ride after William's transplant and we are never really sure what's around the corner. We do know that we have his amazing donor to thank for every day we have with him.
Oliver wore himself out with all the excitement.
There is a lovely piece about William and Oliver in the current edition of 'Pick Me Up' and they are also in the new issue of Crufts' magazine.