Wiskott Aldrich Syndrome is a immune and blood disease that effects the immune system the B and T cells, you have an increased susceptibility to Infections, Bleeding and Cancer,aswell as delevoping an autoimmune disease without a transplant, Wiskott Aldrich Syndrome (WAS) is potentially fatal.
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Tuesday, August 26, 2008

Were Out of ICU


***This is Chole our Beautiful Stunning Girl***

Day Plus 131

Hi there everyone,
Well sorry I know it’s been a few weeks but its been hard. We are OUT of ICU yes he has come off the ventilor yes that’s right I will say it again he is off the ventilor. We left ICU on the 12th of August 2008, 6 and half weeks we spent in ICU. This makes three admissions to ICU in 6 months, and I have been here for 6 months I want to go home. I’m so over living in the hospital very over it. Since we have been out of ICU they moved us to 3 west in a single room of course, but it is a infection ward and I hate being there as there is that chance Zac may pick something, but we have no choice as when he was in ICU there was another baby there who got chicken pox’s and even though she was in her own room and he was in his own room he has to wait the period to say he won’t get it. Zac liver is still not great there is GVHD and he can take anything in his tummy as soon as even a meds goes down the tube he cries and then brings it back up. Not much to say about his lungs they have not improved as yet I say they might not. Zac is still on meds for his high blood presser and for his heart, so finger cross he gets better there.
I have been a bit sick with a cold so I have been away from Zac for 5 days. Thanks to my family for stepping in and coming to the hospital to look after him I think I would have been a wreck. My poor family copped it though, Zac was crying for me as he has never been away from me and he also is teething and he also has a Staph Infection again this is like the 5th time and he also has a strep infection in his blood, great. I walked back in today and you should have seen Zac he just stared at me for couple of mins but as soon as I put the cot down and lent over to kiss him, he had the biggest smile on his face I picked him up and he just layed in my arms without moving just starring and smiling. Troy has had his first ever stay in hospital with Zac as when I was sick he stayed Friday and Saturday and to top it off Zac was restless and wanting me and has reacted to the meds he is on and has some big time watery poo’s. I don’t think Troy knew what hit but I’m pleased to say he coped well and will be staying more often now. I think it was an eye opener, don’t get him wrong he is normally looking after James our 5 year old.
We put James wish in as well you should see his wish, my boy want a new bedroom nothing to big. “LOL” He want bunk beds but with a double under the top bunk matching cupboard and drawers and bedside table. He wants shelfing for his room and a corner desk a underwater camera and a IPod with an iPod player speakers, a TV and Video and DVD player plus the NEW WII with games list keeps going he want a tickets to the Easter show with bags and rides there more. The wish lady laughed and found that it was cute, at least my boy is choosing things he wants not a holiday that last for what 5 days and everyone goes. This is what he wants so good on him I say.
My friend I made here her beautiful daughter is going in for a Bone Marrow Transplant, so please everyone say prayer she should be in within the next 5 weeks. Oh my she is unreal full of cheek but only good cheek and I don’t think there is no one on this earth that could say she is not beautiful, so look out mum and dad when she starts dating in 10 years. Bless you Chole everyone wishes you nothing but the best.
Kristy went to a Sex and City Party check her blog, they were drinking some or two. LOL




Please note I have permission from Chole mum to show these photo's of her and her story but please note that I have a NO COpy right on this blog do not copy any info or photo's for any reason or any use no copy.

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