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.

Day +133 update

Well, Max's engraftment has fallen to 37%. Tomorrow we get a bigger boost of donor cells and pray that it works and Max's engraftment goes back up without too much GVHD.

Day +133

Yesterday I found teeth in Max's mouth!!! Two of them in the bottom center! They must have been there for a few days because they're pretty large, I can't believe I didn't notice them before. Otherwise, Max is doing ok. He is climbing as much as he can onto as much as possible and walking along furniture. We went early in the morning (7:30am) to our IVIG appointment and that was pretty brutal, but our nurse was pretty good and we got out a little after 12:30pm. His adenovirus quantity is still under 625 which is ok and he is still feeling ok. He weighed in yesterday at 8.48 kgs. but his ANC is still low and they found neutrophil antibodies in his blood. The doctors said that unless this causes more problems they won't do anything to stop the antibodies. Also we went to the Audiology department for a hearing test yesterday at 4:30pm. The ladies there were amazing. They even got Max to wear earphones - three different sets with no problem. It was like magic! He was so interested in the little games they played with him and the different sounds that he barely even noticed what else they were doing. I did not expect the appointment to go so smoothly, but they were really awesome and Max hears normally!!!
I added some pictures from Dec. 10th, Max's 10 month birthday.

Day +126

Max's adenovirus is still under control and he is still c-diff negative as far as we know. yesterday we had a really long hospital day since we got ivig and pentamidine infusions. Max keeps gaining weight and is now 8.2 kgs, because he is also eating A LOT more formula. today our speech therapist stopped by and we tried to get max to eat more solids. then max and i went for a long walk to the UC campus. it was 39 F today. on monday we'll come in and finally get an engraftment study, next week we should know whats up (hopefully). Max keeps on pulling himself up to standing everywhere and cruising along the furniture looking for things to grab off of table tops. here are a few pics. although roman still hasn't brought the good ones taken with his camera two weeks ago...

Day +118

im sorry its been a while since i've written last. everything has been going slowly but surely, just not sure which way. Max's adenovirus is now in his blood and his poop is still smelly. last week his adenovirus was very low and his c-diff was negative, but we'll see what this week has in store. max is getting ivig weekly and hasn't gained weight until today when he finally went up to 7.6 kgs. his engraftment went down to 65% last week and we got a teeny weeny little booster of donor cells on friday. Dr. Davies said that we won't be taking any more engraftment tests for a couple of weeks to let the new cells grow. Max has been crawling all over the place and opening drawers and being adorable. we're ok. i'll try to post pictures soon.