A pack of choclate buttons and a pack of sheep dogs

Friday +1
His temperature has come down from yesterday and has been more or less steady today. Still not TPN but that’s a good thing, he has had more milk feeds today and overnight too. He is still not eating but Daddy managed to entice him to eat 20 chocolate buttons (whilst I was out!) and drink some milk. He is currently having some red blood cells to top him up a bit. This is quite usual and he may need more or more platelets over the coming days. He has been very subdued today and has slept a bit more than usual. The dogs of Windcutter Down raised a much needed smile this afternoon (that’s Greg, Swift, Gail, Fern and Ernie for those of you less familiar than us, and I doubt there are many more familiar than us with those sheepdogs, save perhaps David Kennard himself). I found a wireless internet café, just down the street so will be getting in the habit of popping there every so often. Saw the Consultant but nothing exciting to report. It’s a waiting game now. We’ve spent hours (I exaggerate not (for a change (ooh I do like my brackets!))) sorting out various TV/DVD/Video combinations and finally got everything working only yesterday or so we thought, found that having been able to watch Tractor Ted successfully ALL day, Rob went to put a film on for us this evening and it refused to play (which is what happened last night too) so we have been sitting on the bed, wearing plastic aprons watching Confetti on the laptop (with it balanced on a pillow so that the film wouldn’t jump?). I would recommend the film, it made us laugh but I’m not sure about the plastic aprons! What fun we are having day +1 is almost over and my bracket quota is full.

Saturday Day +2
William was very sick last night mostly over Mummy, which was nice and necessitated a midnight shower! He now has an anti sickness patch (like a nicotine patch!) tucked behind his ear. I had coffee this morning with Annie, a friend of my Aunts (Phyllis) who trained and worked at GOS. She was really interesting to talk to, her husband also had a BMT some years ago and it was quite diverting to meet someone new. William was sick again late afternoon so that anti sickness patch worked well then. He played well today though and seemed to have more energy. He is having his milk very slowly continuously overnight and tomorrow morning so 18 hours in all. Hopefully that will mean that it will stay inside for a bit longer and be extra nourishing. He has a red rash over his torso that is a side effect of the Treosulfan but it is not too itchy and he had some Piriton to calm it down. His tummy was a bit swollen so they called a doctor to check that it wasn’t fluid. The doctor who came is not usually on the ward and works with Prof Thrasher and Dr Siobhan Burns on the WAS gene therapy research. I think that he was quite interested to meet a real WAS boy during transplant! We told him how excited we are about the work that they are doing for the future to help other WAS boys. The post came last night about 8pm and we were excited to receive some more cards and gifts so thank you.