Day +193

Engraftment from Tuesday: 20%.

Day +190

Max's engraftment from friday came up to 28% which is the highest rise in engraftment that we've seen. I'm only a little bit excited because there is no way of knowing what's happening next, and I'm tired of jumping and then sinking as the engraftment goes up and down. I want it to just go up to 100% already and stay there! Otherwise Max is still doing ok and I'm happy with that. Max's orthopedic appointment on tuesday went well - his kyphosis is still flexible, meaning that his back is only bent when he is sitting on his own and not all the time. This means that Max doesn't really need a brace yet and maybe won't need much intervention at all ever. We still get IVIG weekly and nothing else has really happened which is pretty great.

Day +183

We've got words!!! Max now pretty consistently says "bye-bye" when someone leaves. Of course he waits until the door closes, but after that he definitely has been saying it. Also, he says "papa" to Roman, I haven't heard it, but Roman and my parents have. Our engraftment is still at 23%.

Day +176

It's been so long since I posted that I had to figure out all over again what day # we were on. It's really nice being home and not thinking about the days as much. Yesterday Max turned 1 and we were very excited to have made it this far. Last year one of our nurses in the NICU gave Max an outfit for his 1 month birthday that was a size 12 mos. I remember thinking that it was very optimistic of her, but we made it!!! Max is doing ok for the most part, but his engraftment is still down at 23%. We're probably going to get another DLI tomorrow, but today we're going to Cincy for our IVIG. It'll be Max's first trip in his new big boy car seat!!! Enjoy the photos!