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

Tuesday 18th August 2009
Plus Day 494

Hello Everyone,
Just a quick note, Zac will be having his GFR on Monday so we find out how well his kidneys are working Fingers Cross.. Still Tube feed but trying to get him off it so fingers cross again.. Zac has a appointment in Sept with the hearing doctor so we will find out what they are going too do I begged NO cochlear just an aid pleaseeeee...
James results are back on his IQ and development test well it is Asperger's ( which is a form of autism ) who would have thought oh well just throw another one at me.. James is ok he can talk and live a normal live just needs help that is all. Back at John Hunter next week for appointments so don't want too, when does it all just stop and life get NORMAL. Just Over it all..
Very Important DAVID McNALLY has now reached 3 years post transplant, Party for David I think ... We are all thinking of you David and we hope that your GVHD clears up soon and you can be pain free and free from all the drugs.

I will let you know the results of Zac's GFR as soon as I get them.. Thanks to everyone who has been sending me emails very lovely of you...
Till Next Time "Smile" ...
Susan

Monday 13th July 2009
Day Plus 458

Hello Everyone.. I have had a packed month I had a baby shower for my sister inlaw at my house and my other sister inlaw also had a baby shower two sisters pregnant together and both having boys and they are three days apart, I can only wish them the best on a safe and healthly babys boys... I also started a part time job just on saturday mornings, don't know how it will go or if it will last but it gets me out of the house and earns a extra bit of pocket money. Which is always welcome in my house. I have had the flu for three weeks and was tested for whooping cough it came back that I did not but I can't help think that I may have as they still placed me on the drugs clarithromycin which treats whooping cough and with in three days a was better and my cough was almost gone. We all have been sick with a bug aswell. I was so sick and both James and Zac had it too that Troy had to come home from work only to see he started to get sick 2 hours later.
We got an letter from the school the other day we thought James was in trouble but he was been awarded for doing so well in school and he is only just started this year Wow. I'm so proud of him my little shinning star.
Zac has been ok still tube feed but he can't seem to knock this cold he has had it for about 2 months on and off with a cough too. Zac is walking now and walking everywhere it is so good to see but he is still not talking any more words only Mum Dad Nan and Bub but Troy believes he said Ball on the weekend but I have no heard it and Troy can't him to say it again oh well it will come. Any idea on teaching Zac to talk would be helpful my friends anything, but I think he will not talk much till they help with his hearing I wish my doctor would pull his finger out and hurry up with an appointment.
I will keep you updated on hiis hearing and feeding again soon till them
BYE and be safe...
Susan