Tuesday, June 20, 2006

GOSH on Monday!!!



A couple more photos from Little Chaser's last week - William very grown up on the train and another from the music session.

Well, we got the call. William's bed at GOSH should be available for him on Monday! Much sooner than we expected and I have very mixed thoughts about it. My head is saying it is good that we are going so soon as we can't move forward until we get these last tests done. However, my heart is struggling with the thought of being seperated from the girls once again and feeling so isolated in hospital with William in the evening when he is asleep. Paul will be so busy at Glyndeborne and won't get back until midnight once the shows kick in so we won't see a great deal of him. I hope this stay won't be long but we have been booked into a long stay bed. I am also nervous of what they may come up with as a diagnosis. The community nurses today agreed that his walking is getting worse and his balance and gross motor control is clumsy and unsteady. I just hope that there is no brain involvement. He clearly has "syndrome features" I can see that (although I must say they suit him very well and he is beautiful!) and so many syndromes have brain involvement. I guess, we fear that his walking and balance is worsening so where could that lead? Of course, it may only be that he is deficient in some mineral in the TPN and correcting that could see him walking tightropes! All will soon become clearer and that is great, but scarey too. So far, everytime we have been in hospital for tests new things have been found and the picture has become more complicated. However, there does seem to be a cluster of syndromes that he does fit so, hopefully, things will get clearer soon. Once we know what we are up against we will be able to plan and ensure he reaches his potential in every way and has the best life possible. Then, of course, there is the issue of the transplant assessment that may come soon after this hospital stay.

It's a good job I moved Ellie's party to Saturday. We will, at least, get the girl's birthday parties in before Monday. Hope's birthday is tomorrow so I must get wrapping...

1 comment:

Shadow said...

Happy Birthday Hope!!!

Good luck for Monday and onwards all of you.

xxx