BEING HOME WITH MY BOYS

11th December 2008
Day Plus 244

Hi Everyone,

Well my doctor is saying he wants to keep his head in the sand a bit longer with puting Zac back on steriods. I have no idea why and it is driving me crazy as I don't want him back on steriods but I also hate seeing him in pain, what can you do...
I see my doctor this week plus a skin prof aswell, so I will update you on what he has to say..
I have been a little worried about Zac, as he has had an ear infection and his skin is very bad. I just hope we are not going to end back in hospital for christmas, it gets so worring when they get sick.

Zac's bloods were ok this week which was nice to see but his kidneys are still up and Liver too so fingers cross they will come down.
Zac is booked in for a hearing test where they are going to put him to sleep as they think his left ear does not work at all, he is also due for his next MRI and GFR plus he is also due for his Lung test too. Well we know what hospital are like so I think it well be some time next year.

Do not copy any info or photos not to be used by anyone at anytime no copying..

Day Plus 235
2nd Dec 2008

Hi There everyone I'm HOME HOME HOME HOME HOME HOME HOME.....
I came home on Day Plus 218 Tuesday the 18th of November 2008....
I have spent 39 weeks and 5 days in hospital all up...

Zac is ok he is still on 10 different drug including blood pressure drugs and sorry been so busy that why no blogs for a while. Zac is getting worse by the day though it looks like his GVHD of the bowel so the doctors are going to talk to me on thursday so looks like back on the steriods. Great!!!
Being home is so nice, it is like coming to a new house. James loves having me home, I didn't tell him I just turned up he was so happy he thought I was a dream. James asked his Aunty if I was a dream... poor little boy...

Zac has still got his button in his tummy and feed 18 hourly but he has been having tiny bits of food and took his very first slip of drink last week but only done it once more than that. But it is bit by bit day by day.

Zac has settled down being home, which I was a bit worried about but nothing to worry about, he is now rolling on his tummy now but can't roll back yet he is also straighting his legs a bit now so when I pick him up he will sometimes only sometimes put his legs straight down.

Bye Bye Now will update you on GVHD...