March 
The highlight of this month so far has been the wedding of our close friends Katy and Rob. Obviously and unfortunately we were not able to attend the wedding properly. However we did all dress up and drive to the church to watch Katy and Rob coming out after the wedding ceremony. James thought it was fantastic to sit in the car with the window down slightly and throw rose petals over Katy. He also enjoyed having a photo taken of us in the car with Katy and Rob stood next to it. To make it extra special James saw Grandad and Grandma Taylor who were guests at the wedding, and he was able to shout to them through the window.
James has started to enjoy his crafts and painting again. This is lovely to see as pre transplant he had no inclination to do anything but watch TV all day. This shows how poorly he was feeling then and how much better he feels now. Lauren tries to join in, but gets a bit muddled and eats the crayons instead of drawing with them. He has also been baking cakes, and eating them all straight after.
James is on a very high dose of steroids which means he has constant cravings for food. Due to this he has put on some weight. However the TPN he was having before transplant only gave him enough nutrition to survive on a daily basis but not sufficient to maintain the reserves a body needs. It is due to this, and the fact that a new bowel can be slow to work properly and absorb everything that James still needs his overnight tube feeds despite eating so well in the day time. At the beginning of March James' tube was due for changing as he had come home with his original naso jujenal tube. The community nurses came to change this for a naso gastric tube, the whole experience being pretty terrifying for James. After this we explained that he would need a tube only until his "special milk" feeds were no longer needed and until he was happy to take all his medicines orally. This did the trick as regards the medicines, from that day on all of his medicines have been swallowed orally. James has even learned how to push the syringe into his mouth himself, so we just hand them to him one by one.
The medicines have proven to be very time consuming, not just in their administration but also in keeping tabs of stock. He still has 13 different medicines, which are sourced by 3 different suppliers and all of which have different shelf lives. Each week we find we are running low of something and need to re-order and collect. Hopefully this problem will resolve over time as the number of medications he needs reduces.
At the back end of March mum had a wonderful surprise when James and dad came home from the Birmingham clinic appointment minus a tube ! When the dietician said he could have his tube removed poor James was terrified expecting another new one to be inserted. He was so excited when this didn't happen. We have to keep a close eye on his magnesium levels now that he isn't receiving his over night milk feed, and check that he doesn't start to lose weight. What a result for James though, only the ostomy bag left, (and the medicines of course but these will be life long).
