Monday, August 17, 2009

More News....

Today we went to see Kyler's Hematologist because he wants to keep a check on his blood levels. Well his platelets are down to 49,000 but they dont want to start blood transfusions yet because they dont want to introduce to many antibodies to his system. The doctor said he looks great and he doesnt have any active bleeding and so far hasnt had any bad bruises (which is great considering that he is starting to play rough and kick and throw his self around) so they dont feel like he needs tranfusions just yet. He did great again today having his blood taken. He didnt laugh like last time because he was getting really sleepy but he didnt cry or whine or try to pull away and they had to take it from his hand which usually hurts him. I just feel like mentioning how perfect and sweet and good my little boy is. All of the nurses and doctors talk about how outgoing and good he is and they have all fell inlove with him which makes his appointments more fun for him. One of the nurses even calls him "her little boyfriend." Hes a BIG flirt already :) But..other than his blood levels I dont have any more news..The stem cell nurse said that so far they havent heard anything else about the donors so they more than likely havent gotten back intouch with the association. Hopefully Ill have more news soon! Until then (and even after) Keep him in your prayers :)


  1. Hi! my name is Paige Welborn. My son Ayden also has WAS and got a bone marrow transplant 5 months ago at 8 1/2 months old. I'm a carrier for WAS. I just want to let you know that he's doing great! I know I am always thrilled to hear from people whose kids with WAS are doing well, whether they've had a BMT or not. If you'd like to, please email me at You can also check out my blog about Ayden at I found that talking to other parents who've gone through this stuff really really helped me. WAS is SOOO rare, that it's easy to feel really alone dealing with it. But we've even been able to be/stay in contact with a 45 year old man with WAS who's never had a BMT! We got to have lunch with him the 2nd day Ayden was in the hospital for his BMT. It's a great community of people, and I'd really encourage you to start talking to some of us. It'll help a lot, I promise! :-D

  2. OH, also, on Ayden's blog I have links to other blogs of families who have boys with WAS. Check them out too! Actually, all of them have had BMTs as well. Would you mind if I added your blog too?

  3. Hi Jill,
    I too am the mum of a 2 year old with WAS. His main issues are his low platelets (12 - 25K) and he does bruise very very easily. We are on the active list to have a BMT, as they have found a good cord blood match. Very scary stuff, but as you have mentioned, I feel that having my baby cured is the best thing possible! I live in Australia but if you would like to chat, or have any questions please contact me'm also on Facebook! (BeeFinch). Hope you are doing ok, it is great to have others to chat to, who REALLY know what you are going through!