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.