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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Saturday, April 19, 2014

Getting back On Track

20th April 2014


So it’s been a long time but there has been so such going on in my life it has been so full on.

I have not been able to post as every week something has been happening and I just did not know what was happening all where to start. I must say a big Thank You to my closes Mates and family who have been very supportive of me and being there for my family. My life in no means is ever normal and when it is Normal Trust me in saying this it is not your Normal. My children are my world and this I am very grateful for them even when they are driving me mad I love them just that little bit more to be able to have this as I never knew if I would ever get this or what is ahead. I have learnt to take each day as it comes and enjoy it even if you can’t wait for it end from the fighting kids.

I took my Kids to the Easter Show on Thursday and they Had a so much fun but the best part was watching them on the Dodgems Cars Troy was Driving Zac and James was in his own car and they were all just laughing so hard Zac was nearly wetting himself every time James hit them he could not stop laughing it must of been huge because I had three people come up to me to say is that your boys and there laughs are making us laugh. It hit me and I had a tear in my eyes that in this moment I could of lost and how grateful I am to watch them here and what a Journey we have been through over the last 11 years and what a great day we are having.

I will start with James first so he has been going through lots of things over the last 12 months it’s been very hard he is climbing the ladder though and it breaks my heart to see him struggle so much. He is on only 3 pills a day every day now so not bad now.  He has had so many appointments with different doctors and is not sleeping through and wakes and stays up so much in his head on the Good Side he made a Friend we have had to push him a lot and if we let it go he goes back in his shell which is worrying but we have just been pushing and it seems to be working a little they even have had sleep over’s each house and the parents of the child are so great the boys are starting to build that friendship I just hope it lasts. On the other side James Asthma has been setting off very quickly and he has been having lots of tests and doctors appointment we have been through a WAR in the last 6 months it has been hard we have had Two Cancers Scares with James one just before Christmas and only got the results 1 day before Christmas that it was clear and second one was a tumour in March this Year again which is again clear.Even though we are safe the doctors have said every 3 months he will have to have bloods and tests as this could change and he is not out of the woods totally I am so happy it is not funny, but so scared to death of it happening and so over the stress so all I can do is go on and hope it never happens. James has also been seeing a endocrinologist for a few reasons and goes to him every 6 months to top it off the doctors don’t believe he will never ever have kids they are 98% Sure the Doctor said he believes 100% but he can’t say that till James turns of age to get himself tested this is the side effect of transplant so you have to take the good with the bad here’s hoping they r wrong.  James is doing good in his support class and is starting to like school a little and the best part is we only have the upset morning every now and then instead of everyday.

With our Zac his disorders are getting worse and they have had to double up on medications to help with his anxiety disorder he is not sleeping at all and I am at the end of a rope he will be 7 in September and I have a child that sleeps worse and I mean Worse than a baby but there is not a lot they can do so the doctors have double up on his sleeping medication and the outcome put me in tears as the doctors feel doing this will give him 4 to 6 hours max 4 hours sleep OMG but I went to the chemist to fill the scripts and the News for one of the drug it would cost $7000.00 dollars for 5 to 6 months use with the other drugs included we are looking at around $450 a week in medication on both kids which we don’t have. We have done everything to fight this but can’t win  our chemist has been calling around chemist who would compound the drug into one bigger dose so I will explain in one of Zac drugs he has between 8 to 14 tablets a night YES you read right that many tablets plus he is on another 3 different medications as well so what we want is to make one Tablet only to the right MG but we have not had a lot of luck we have found one in NSW and they will get back to us if they can do this it is a OMG Stress if they can the cost will be half of what it is maybe even a little smaller than half. If this happens we will go down to 6 pills a night so much easier for Zac to swallow plus I won’t have to go through so much yogurt Yes Zac can only swallow the drugs if I buy the squeeze Yogurts I place one pill in and squeeze the yogurt so quick he has to swallow Mean Mum I am but it works LoL and cost so much less for us plus we might be able to afford the mediation. YaY if it happens I might start getting some Sleep Sleep Sleep and hopefully his anxiety starts to settle a little more and I don’t care who wants to judge I have been without so much I have gained weight I am not myself anyone I snap I become so down and upset I have great mood swings from the lack of sleep and to top that off I the stress of all their problems all their doctors appointments and therapy appointment plus I work 5 days a week. Sometimes you need to put your hand up and say ok I give in and I take that help now.

There is so much more to add but I just don’t know where to start and keep going  a lot has stayed the same from previous posts but  I will update again soon it’s just to late plus once Zac Turns 7 in September I think it might be time to turn off the Blog as he is day 2203 now and that I say WoW maybe I have kept this running to long I really Don't Know.

On a Nice Note we are renovating our house and updated our cars from old bombs to nice reliable ones which I have to say is nice to have a nice thing happening. Starlight Foundation has been in contact with Zac for his Make a Wish and the First thing he said to the lady was where you’re WINGS and WAND is if you make Zac Wish you need this. He was in a little Horror that she left them at the office I have never laughed so hard at him.
There are a few that are on my mind in our WAS Group of friends that still fighting the fight and my thoughts are always with you.

Till Next Time Next UpDate


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