no changes

our plans are pretty much the same wait and see. Max's engraftment was 15% again last time. We'll check it again on Thursday. Just praying and enjoying life right now.

Day +????

I'm going to count the days again soon I promise. Max's engraftment is 17%, maybe we'll get to speak to Dr. D this Friday. It would be nice to hear from her.

Day +???

Sorry for not posting, we've been pretty busy. Max's engraftment went from 18% back to 16% and then last weeks was 17%. We'll see what happens this week. For now we're looking for a new donor, and also monitoring Max's engraftment. This level, in conjunction with ERT may be enough to hold on for another few months because he needs much less enzyme for his brain to develop and the ERT will help with the rest. God willing, his engraftment will go back to the 20's and we won't have to do another transplant. For now, we're doing weekly ERT and waiting and watching and praying. He loves hanging outside and going places and seeing people so it would be a big bummer to take that away from him again.