29/11/2010
Day Plus +963
Ok I know it has been awhile I'm slack but heaps been happening.
Zac started child care for couple of hours a week and going well other than the crying everytime I leave I hate that part but LOVE the peace and quiet.
Zac speech is getting better and he is saying more words now which I just love to hear.
Zac has had a few colds and bugs so been fighting them off.
Zac eating is not so good he has stopped eating dinner and is going off breakfast but he loves his milk the doctor is not happy because he is drinking around 1 litre to 1 and 1/2 litres a day of milk and this can cause problems with his iron levels and something else in the blood when your having to much milk and not enough food. So today he was sent off for bloods to test all levels and how they are working. Zac had his CT Scan he ended up on oxygen for a few hours and dropped his heart rate twice no biggie so that was good for once. The results are in and the doctor says There is a small area where his Lung has Partialy collapse this will not heal. The area is small about three fingers wide and across. This area is not a major concern at this point which is soooo good to hear and what they would do for him he is already happening anyways he is on 2 puffers sometime steriods. The doctor said he will need regular scans to montior his lung so he does not get worse. This explains why Zac has a cough and cant get rid of it. If his cough, asthma gets worse or he starts with breathing issue the doctor will issue a emg scan. If the area gets worse bigger this can cause a few Complications or if it gets bad this can be life-threatening. There is a weakness in his lungs so he is more prome to getting colds and chest infections which could add more presser on his lungs which could lead to bigger problems on the lungs.. But the Doctors said his lungs are looking ok other than this small collapse part.
The doctors are going to see James in Feb and we are going to talk about if we should start treatment on James as he is not growing nor really putting weight on he only weighs 17kgs and is 8 in Jan... So fingers and toes cross James grows and Zac lungs stay the same and you know what I really do think Zac will be fine and nothing will happen because I think enough has happened in this family and it is time for some good to start happening..
Zac is still having speech and OT and Physico and early intervention as will start next year more classes of learning for him so hopefully he maybe may get to go to a normal school oh I hope so.
James is getting a teachers aids and a special tutor for next year to help him too.
Poor James is having problems in class and making Friends I wish i could take the aspergers away and make his life easier he gets so upset and cries because he has no friends to play with but he does not play with anyone at school so why are they going to come over to our house. It breaks my heart to see him like this he wants Friends soooo bad it is not funny he just does not know what to do. He did have one boy come over for a play but he does not want to be friends with James now after his visit and I thought it was going so well but James said he wont play at lunch time and When James rang him up he was very rude and hung up on James and poor little James just cried his heart out the next day the child told him not to call him or speek to him he only want to see what James house was like and what we had little SHIT of a Kid... There is another kid at school that is picking on James and twisting his arm back smashing his lunch and swearing at him he is the worse child at school and I wish they would get rid of him I dont care that childs needs to be out of way of hurting children.
Untill next time Be good Smile and Laugh
Cheers Susan
It is all happening here so Bring on Christmas and a Great New Year i Say...
When I get Zac Bloods back I will let you know and I will update on James when I see the doctor.
Welcome...I have two beauitful Boys James 9 and Zac 5. Both were born with Wiskott Aldrich Syndrome, both have recevied a Cord Blood Transplant (Bone Marrow), James also has Aspergers. Here you can follow our family's story before, during and after Transplant and all our Highs and Lows..
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.
Copy Right .. Do not use any of my blog for any reason Read Only.
Copy Right .. Do not use any of my blog for any reason Read Only.
Monday, November 29, 2010
Subscribe to:
Posts (Atom)
FEEDJIT Live Traffic Feed
Information on Wiskott Aldrich Syndrome
Labels
- All Together (1)
- It is what is inside that counts. (1)
- Look and Believe in the Good (1)
- Remember there is always someone worse off so smile and get on with the day (1)
- Smile and the whole world (1)
- smile miracles do happen (1)
- TELL IT LIKE IT IS........ (1)
- The rash (1)
- Theres a Silver lining in every cloud (1)
- Whats on the inside that counts (1)