Day +223

Max's engraftment keeps moving around in the 20's. Last time (Monday) it was 28% and the engraftment from Friday is 25%. Otherwise we're doing ok, Max is as cute as ever. At our next appointment the Drs. will do an immunology study to see how Max's immune system is functioning. I'm anxious to find out. I'm also anxious about Max's engraftment level and I wonder if he'll always just stay in the 20's forever and ever. I wonder if it's good enough to make the enzyme he needs and get rid of his GAGs.

Day +217

We went to Rochester for a week!!! and just got back on Sunday, so that's why i haven't updated yet. Max's engraftment went down to 24%, but otherwise the trip was a lot of fun for everyone. Especially Max who got constant attention, from his grandparents, uncle, and Simon (our miniature schnauzer).

Max walks so long as you give him a hand to hold. He stands comfortably on his own and I think he can walk on his own too, but he's be scared to take that first step. We did go to an Occupational therapy evaluation and he is behind a little bit so we're going to get home-care occupational therapy, speech therapy, and possibly physical therapy depending on our PT evaluation on Thursday. He's definitely behind in fine motor skills and we'll just have to work on that.

Day +203

Max is 13 months old today, so we'll be taking some cute pictures to mark the occasion. Also Max's engraftment from Thurs. went up a little bit to 25%. I just hope nothing goes wrong and Max's engraftment goes up. Our weather here is beautiful, 64 degrees for the last few days!

Day +200

It is day 200!!!! That's pretty exciting and the weather is beautiful and Max is amazing. He no stands up on his own and stays standing for a full few seconds before plopping back down on his butt. We've been going outside with him to practice walking and he loves looking at the world around him without being strapped into a stroller. On Thursday Max got his weekly IVIG and having sensed a little congestion in Max, Dr. Joshi asked for a nasal swab. As it turns out Max has a common cold virus, but since we've been getting the IVIG anyways weekly, we didn't notice many symptoms because the IVIG was helping him fight it off. Hopefully it doesn't get worse. Our engraftment is still pretty low and Dr. Davies ordered another GAG urine study to see if Max is still making enough enzyme at this low engraftment level or if he needs so ERT again to keep him going while we work on his engraftment. Friday we came in and did another DLI, I think we only have one more bag of donor cells left after this so pretty soon if Max's engraftment doesn't rise, we're going to need to ask the donor for more of his bone marrow. I hope he doesn't mind too much and I hope it doesn't hurt, because he is the one saving Max and we're so grateful forever and ever. I hope someday Max will be able to meet his blood brother from another mother and we could all thank him in person.
All things considered, sure Max's engraftment is pretty low, but day +200 is looking pretty good.