My New Family...

I was reading today a blog from a "liver friend" of mine and all of a sudden I realised I have never written about them on my blog.
A while ago, someone sent me a link to a site "Liver Families". when I got it I didnt visit for a while, perhaps still trying to face the fact that I belong to a "liver family" myself. One day i decided to visit, now its like a second home...
Some people may not understand why I go, infact sometimes I dont even post anything, I just look, see where other people are at or watch and observe other children. I find this site incredible, its been a HUGE support for me/us. All of a sudden the world seemed a much smaller place when I found other people going through EXACTLY the same experience as me. Oh yes, there journey differs slightly (as most people's do) but all in all, they understand, they care and they are knowledgable. I suppose I'm writing this as a kind of "thank you" to them, for offering the site and for showing me that we arn't the only ones on this journey. Its strange because before Christmas I couldn't think of anything worse than meeting other parents in the same situation and having the added pressure of worrying for there Kids, now I actually get comfort from it. Not from the suffering of other children but by the pure and simple fact that we are not doing this alone.
So, "thank you" liver family for always being there, for not judging me on my opinions or on what I say and for letting me feel "normal" inside those walls.

Liz x x

Itching & bloods...

Well, after a converstion with Leeds on Friday, telling them about how bad Daniel's itching has been they decided to send us today to "Alder Hey" for bloods. We arrived as told at 11am only to be told to sit in the kids waiting room. No one came to see us or over an hour when I decided to go to the nurses station where several nurses sat, I asked what exactly we where waiting for only to be told that they didnt really know why we where there. Now, come on, I know these nurses are busy but after sitting for over an hour not one nurse had thought to ring a member of our team and see what they where doing with us. When we had initally gone in I had said "we are here to investigate Daniel's itching", "oh, right, why?" was the answer! So after a while I went back to he desk it was now fastly approaching dinner time and Daniel (& Michael & I) where really hungry. Then I said "please can we go to the lab for blood tests, my son is hungry and we are just sitting around" the health care assistant then entered something into the computer and asked me what was wrong with him and what tests he needed! Michael couldn't believe it! (he usually comes to the important appointments at Leeds, but mum come to the local appointments) anyway I said he needs LFT's and Full blood count - I assume?, "oh yeah" she said! So after all this we went and waited another 1/2 hour to get bloods done and then needed to wat for the results, only to be told later we where infact waiting for a doctor too. So, we had dinner and Waited and waited and eventually 4 hours later we got Daniels blood results the good news is his BILI is 12 (the lowest its ever been!) and the doctor sad his other results where good too! He did ring Leeds with the results and they said since his bili is normal its obviously not that so to up his URSO to 1.5ml 3X per day and that should improve the itch. If not, they will review him in Leeds in 4 weeks and look something else if this hasn't helped.
On another note Olivia is in Scotland at my sister in Laws and I am really missing her, i know she goes away to stay at other peoples but it seems so strange for her to be hundreds of miles way.... She, by the way, is having a ball, playing with her cousin's "Amy & Christopher" and loving every minute.
Will update once we have visited Leeds on May 8th, unless anything happens before.
Liz x x