Day Plus 326
03.03.2009
Hi Everyone,
I know I'm a slacker... I have been so busy and would not believe how time fly's. Well first I want to thank Aimee so much for anyone who does not know Aimee she has a beautiful son David who also had Wiskott Aldrich and Aimee you are always there for me, when I need you, so thank you from the bottom of my heart.
First James started school this year my boy is all grown up...(sad) but happy too he he he...
Zac hearing test came back looks like he is deaf in his left ear but right is ok with a tiny loss. Zac is due for his MRI this month 31st and while he is having this they will look at his ears too.
Zac bloods have been all over the place with him dropping his sugar levels who knows why any thoughts on why let me know please.
Zac is crawling now and his talking is no better still mum and dad but who can complain, best part is that he said mum first... he he he...
not much to say I'm waiting on a whole heap of test to still come so fingers cross.
ps everyone my blog has a no copy right so please don't use my photo's or info for any papers or mags or anything else not being rude only that we have had a mag company use this blog and copy my blog which has now printed it all over Australia and New Zealand and there is incorrect info and photos that should not have been used which has coursed a lot of problems here.Please I'm not trying to sound rude, so noone take it the wrong way..
Cheers Everyone I will post again this month once I know more
Susan
Tuesday, March 3, 2009
Wednesday, January 7, 2009
Day Plus 272
8/01/2009
Happy New Year Everyone!!! I hope everyone had a lovely christmas and a safe new year... Here's to a healthy Safe New Year!!! Well I have been home now for 6 weeks and loving it, it was so nice to be home for christmas Zac had a great day and James was so tried by lunch he fell alseep for a while... James birthday is comming up and i feel for him as i can't have party for him because of Zac hopefuly soon Zac will be out and about with everyone. James also starts SCHOOL this year oh so sad my baby is growing up but so happy too. My doctor is away on holidays at the moment and I wish he was back, Zac bloods have been up and down he keeps dropping his platelets and his urea has been climbing up. Zac blood pressure is still high and to top off that they found a lump a growth in Zac ear and they have no idea what it is, I'm just staying cool and hoping it is nothing FINGERS CROSS. I can't say on Zac about starting steriods or not as one my doctor is away and two the poo has changed into a green paste. Lovely !!! Zac is having MRI in March to check for damage as his last MRI showed fluid around the brain and shrinkage of the brain. That's it for me now have a good one everyone till next time Have a safe one BYE....
James Last Day at Preschool
Zac
Margaret Troys Mum (NANA) and James
8/01/2009
Happy New Year Everyone!!! I hope everyone had a lovely christmas and a safe new year... Here's to a healthy Safe New Year!!! Well I have been home now for 6 weeks and loving it, it was so nice to be home for christmas Zac had a great day and James was so tried by lunch he fell alseep for a while... James birthday is comming up and i feel for him as i can't have party for him because of Zac hopefuly soon Zac will be out and about with everyone. James also starts SCHOOL this year oh so sad my baby is growing up but so happy too. My doctor is away on holidays at the moment and I wish he was back, Zac bloods have been up and down he keeps dropping his platelets and his urea has been climbing up. Zac blood pressure is still high and to top off that they found a lump a growth in Zac ear and they have no idea what it is, I'm just staying cool and hoping it is nothing FINGERS CROSS. I can't say on Zac about starting steriods or not as one my doctor is away and two the poo has changed into a green paste. Lovely !!! Zac is having MRI in March to check for damage as his last MRI showed fluid around the brain and shrinkage of the brain. That's it for me now have a good one everyone till next time Have a safe one BYE....
James Last Day at Preschool
Zac
Smiling Zac Zac
Me with Bronte
Margaret Troys Mum (NANA) and James
James and Me Hi Five Zac
Do not copy any info or photo's not to be used by anyone no copying anything from my blog
Wednesday, December 10, 2008
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 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..
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