Day +94 We had another fun weekend together. Last weekend Julian was sad when Daddy and Jaylynn left, because he felt like he didnt get to have any fun with Jaylynn. It was a shorter weekend, and he still was not feeling 100%. This weekend, I know he had more fun, so that was good! When we were talking this week, he referred to Jaylynn as his friendly baby that plays and jumps. :) Julians procedures went okay on Friday. It was a very long day though. After the procedures, Julian needed an IVIG infusion (it is sort of like an immunity boost. If his levels are low, they do an infusion). They were also hoping it would help fight this virus that seems to be hanging on. The good news is that the adenovirus is no longer showing up in his stool. The bad news is that we are still averaging 8-10 stools per day, and sometimes a bit more. This has me a tiny bit discouraged, because every time I think his appetite is picking up or his diarrhea is improving, he starts having more stools again, or his belly hurts and he doesnt eat...or worse yet...he gets gaggy and sometimes vomits. His doctor has not been convinced of GVHD thus far, because he has not gotten dramatically worse the way most kids do with GVHD, but unfortunately, this stuff is keeping him on TPN and could possibly delay our return home. We are still awaiting test results, and I dont really expect to get much until his appointment on Tuesday. We may not have all of them by then, but we are most interested in the chimerism results, which we of course want to see at 100%. We are still hopeful that all of these will be perfect. Apart from his belly issues, he has done very well, and that is the most important thing. Everyone has reassured me that he will eventually eat again (even though it is still hard to hear him telling me about how his belly always hurts). The preliminary bone marrow results that I have been able to view on his online chart seem to be just fine, so we are very very grateful for that! Please continue to pray with us that all of his results are perfect. We thank the Lord for the answering our prayers. We will share more once we have more to share. Have a good week everyone! The Andrews
Posted on: Mon, 19 Jan 2015 02:12:21 +0000
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