Today I spoke with Dr. Candotti at the NIH. He was only able to go off the info that I gave him and he still wants some more info but his opinion was that it is a tough decision on whether Kyler should or should not have a BMT at this point. He would feel better about giving his opinion after we have a few immune tests ran (which I plan on trying to have done this week). Me and Coty would really like to go see him personally but Kyler DEFINATELY doesnt need to be on a plane with everything going around and it would be too long of a trip by vehicle and Kyky has started hating his car seat to the point where when Coty him and I go somewhere together I usually end up in the backseat with him. So, we more than likely will not be able to go see Dr. Candotti but I am going to have the test ran that he would like and give him the info. His opinion is that in ways Kyler sounds like XLT as far as platelet levels go BUT he said these new bumps (which I talked about in my last post) sound like they could POSSIBLY be a skin related virus which could mean that his immune system is being affected and that he is more on the WAS side rather than the XLT side. So, as previously mentioned his opinion is now going to be based off of which mutation Kyler has (when I find out) and what the immune tests reveal. So at this point we are still opting for the BMT. No donors found yet, and after reading a couple of things I would really rather not use a cord. I am going to do everything in my power to avoid that. I know SOO many of you have offered to be tested to see if you are a match and I am so grateful for that!! If we cant find a donor I may ask what we would need to do for those of you who would liked to be tested before we even consider the cord blood. Who knows ...one of you could be our own personal angel :-D
Other than that the only thing is Kyler is going through his SECOND round of this stomach virus. I feel so sorry for him but other than crying really hard today for about 5 minutes while he was cramping up he has been a happy baby. He loved on me afterwards like I was the one who had been hurting. I know every mom thinks this but he is the sweetest most perfect baby and he ALWAYS knows how to make me smile...and he's only 5 months old (well he will be on the 15th).We have an appointment monday so ill update then! Thank you to all of you for praying and keeping updated on Kyler..please continue to do so! We love You!