Day +21

Photo of the Day
Lily took this picture of Ragor, apparently letting off a very big one! When Lily visited Ragor was being quite windy, so I wasn't surprised! Jesse was unimpressed, he took control of the computer, blew the photo up and then announced it is in fact a very big firework going off somewhere quite far behind him. The jury is out on this one, what do you think?

Sorry yesterday's post was so brief, I was so tired I kept falling asleep at the computer. The only way to write anything was to be as concise as possible. It was a long day yesterday, I went round to see Derek in the evening but got called back by the hospital as Jesse had been sick and wanted me. It took me till 2am to get him settled, what with sheet changing etc.

Jesse still is pretty poorly. He has now lost 2.9kg. I hope the TPN will stop this dramatic weight loss, it is only his second day so we'll see. The good thing the diarrhea and vomiting is definitely better. But he is still suffering from very bad tummy cramps a lot of the time. This morning he was in a very bad state, crying non stop for ages because of the pain. Eventually he slept and was a bit better in the afternoon.

Chloe visited again, and as ever it made a very big difference. I saw Bernie this afternoon which was so lovely, his cold is very slight. I heard him cough once and his nose wasn't running, so I hope it was OK to take the risk. We had a meeting with the genetics team, who may have come up with a diagnosis but it is very woolly.

They have said it may be WT syndrome, also known as WT limb blood syndrome, but it is so rare there are only three recorded cases I can find online. One in 1977, one in 1987 and one in 1997ish. I don’t think we have it unless it has spontaneously happened in me/Derek or Jesse as there is no family history (but this is a possibility). It is supposed to be a dominant gene which means there is a 50:50 chance of passing it on, in which case you would have been able to track back through our families (blood disorders, anaemia, hand malformations and leukemia) and other than Jesse there is no one, also there is no test so they’ll never really know.

They did my bloods yesterday, the counts are normal but the blood film isn't back yet. They are interested in me because I have asymmetry in my thumbs, although the Professor though it was so slight it probably didn't count. They did Derek and Bernie's bloods this afternoon (B wasn't very happy about it!). Bernie's hands are so fat and squishy that it is very difficult to say if they are normal. Also his fingers are very double jointed, but they felt that maybe the left thumb was a possibly little abnormal and that his right was fine. They want to see him in two years time when it will be easier to tell. They basically said that we will have to wait and see, if everything is fine then good and if it becomes clear that its not then we'll have to deal with it. It is frustrating but there is nothing else we can do. We'll get Bernie's blood results soon, fingers crossed.

It is not even 9pm and I have done the blog! Jesse is fast asleep and I am going to get some food and if Jesse stays sleeping I'll go over and see Derek. Next week I will be here in my own so if anyone fancies a meal/drink out with me very locally to GOSH it would be lovely to meet up. It makes a real difference to have some kind of adult conversation at some point in the day. Thank you for all your encouraging posts, phone calls and emails. It does help us all keep going...

love to you all,

C

x