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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Wednesday, November 25, 2009

26/11/2009
Day Plus 595

Hi Everyone,

It has been a while. Umm where to start, heaps has been happening but the days go so quickly sorry for not updating in awhile.
Zac had another operation yestarday they removed his Port and feeding tube and checked his ears out. The operation went ok but he had the start of two Cardic Arrests one in the operation and the other in recovery he is ok. The operation went well other than that. We are off to Sydney again soon next year to see some more doctors Zac hearing is no better and they are not sure if messages are sending and receving to his brian and ear and that is why he is not speaking or if he needs a cocheal. The left does not hear at all and it is nerve damage but the right shows it works so he should speak so they are starting to think it may not work very well at all. We are learning sign with him which he is not doing very well but it takes time. Zac keeps getting sick he has had lungs infections cold and colds and more lung infections and the doctors are not sure why so more tests to come to see what his immune system is doing fingers and toes cross it comes back nothing or nothing bad... Zac may have another operation in 4 weeks if this one did not work well as they removed the feeding tube and hope the hole will close if not he the doctor said Zac will have to have a bigger operation to close the hole which is major tummy operation so fingers cross his hole closes well I do not need anymore operations this year and NO MORE ARRESTS how much can the heart take...
James is still having problems he has two lung infection and ear infection and throat infection and he has had a few down months we are trying hard to get on top of his aspergers but it is hard sometimes to parent him as in when he is playing up is he being normal or not..
Other than that all is sort of NORMAL well for this family anyway.
I hope everyone is doing well I will back in touch soon.
Till Than Everyone be Safe SMILE and Laugh ....
See Ya
Susan
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2 comments:

Aimee said...

Hi! I did not know he had the operations. I hope the removal of the tubes was a positive thing. He must be eating adequately. Keep up the sign language. All of my children learned sign b/c it's easier to communicate with a baby/toddler who cannot speak yet. My grandparents were deaf, from Scarlet Fever, so my first language was sign language. My mother was an professional interpreter for years.

I haven't checked your blog in a while. With our US holidays and the new year, time slipped away from me!

I hope you are all doing well.

January 22, 2010 at 11:00 PM
Hua said...

Hi,

I'm new to your blog and I am amazed to what your family is going through. I hope all is well and I too am hoping for no more Arrests.

Best,
Hua
Director of Bloggers
wellsphere.com

January 29, 2010 at 1:38 PM

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