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!

Day +162

We're HOME!!!!!!!!!!!!
Last Friday we came in to do our weekly IVIG and Dr. Davies came in to see us. I asked if someday we would be able to go home and she said whenever we wanted. So we went home on Saturday, which was my birthday. Best birthday present ever from Dr. Davies, Roman, and all our wonderful friends that helped us move!!!!!
Our engraftment is still down at 24% this week so right now we're at the hospital getting another DLI (booster). I really hope this one works. Also Max's bum has had better days. its really really really red, and especially the skin around his penis. The doctor looked at it and said it didn't look like a fungal infection, just a rash. We started putting Calmoseptine on the rash, it's like concrete and I can't wait to see what happens when I try to take it off later when it dries. Not much else to report, Max has been playing peek-a-boo by putting a blanket over his face and "hiding" also he's still walking with furniture and growing teeth.

Day +148

Hello,
Max's engraftment came back yesterday at 34% so today we came in again to get another boost of donor cells. Hopefully this works. Max still is testing positive for C-diff and he's on Vanc and he's eating less, but holding his weight steady.

Day +141

Max's adenovirus quantity from Tuesday: ZERO!!!! His anc had gone up as well to 1.24 and his wbc is still around 2.5 so that's also very good. Max also started trying to clap his hands on Tuesday. It happened so suddenly, we haven't even been working on it. We've been trying to get him to say bye bye and wave, so when he waved bye-bye for the home-care nurse we were very proud and all started clapping and saying good job. He started clapping and smiling too! I thought he was just trying to show off for some reason that day, but he's been doing it since and he even clapped for our speech therapist today! We're still having a difficult time getting him to eat solids, but he seems to really like salty crackers. He's for now gaining weight and getting taller from the formula he eats too. He's now 8.9 kgs and 75.5 cms. He's almost average size!!!
On a negative note, Max's C-diff came back so now he has to take Vancomycin 4 times a day and it is some nasty stuff. Also, we're still waiting for our engraftment results from the second boost, I really hope we get some good news in the next couple of weeks about that.
Grandma, Grandpa, and Uncle were here over the last few days, so I added some pictures.