Thursday +84 and Friday +85

Grandma rejoined us on Thursday which was great. The consultant gave William the once over and as so often it is just a case of wait and see how he goes. They have doubled the dose of the Ocreotide and it is having an effect on the diorrhea although there is still some. His blood gases have been much better of late because his fluid loses are less. He is drinking like a student (although fortunately only dioralyte!) Today family services called to offer us a room in The Sick Children’s Trust accommodation which is fantastic. It means that Mum and Rob will be able to alternate in the room and we have a bolt hole if we need it. There is a lovely sitting room, kitchen and laundry facilities and it is only just around the corner (www.sickchildrenstrust.org). William was rather puffy this morning so they gave him a diuretic to make him wee and it seems to have helped. He was the heaviest this morning that he has ever been! They laid on a mince pie and cup of tea for the parents today which was nice and festive. Sadly, Keller, one of the boys from Fox is back in the hospital and in intensive care. He is really very poorly after getting a chest infection so please say a prayer for him and his family.