Day + 368

Occupational therapy this morning was good. I like it because it gives me new ideas of how to play with Max and how to maximize his development. Max likes it because he loves people coming over to play with him. Tomorrow we have speech therapy and occupational is back on Saturday. Also we have a visit with the geneticist on Wed. in Cincy and ERT hopefully starting on Thursday. Looks like we have a busy week coming up...Hopefully it goes smoothly and with good results. We're in G-d's hands...

Day +366

Grandma, Max, and Mommy at the Seneca Park Zoo

Max as a butterfly

Wegmans in the Strong Children's Museum of Play

I skipped yesterday because it was the one year anniversary of Max's transplant and we weren't celebrating because I guess it just seems like we're exactly where we started. I was very cranky and so Max was cranky and so we all were cranky so I made food and then in the evening we felt better. But still I was planning on a big celebration. To be honest though, one year ago today, I thought I would be mourning, because I didn't think we would survive. I guess yesterday we should have celebrated how far we've come and how well Max is really doing, and how grateful we are for even that, but I couldn't get past my disappointment. We had a very good day today so far. I'll try to keep focusing on the positive and remembering that we're in G-d's hands and that those are good hands to be in.

Day +363

Max's engraftment is 18%. We're not sure what that information means right now. The process has begun to look for a new donor and I've asked about getting some ERT in the meantime. There's still hope, but not much, that the engraftment will go up in the next couple of weeks. We have to remember that we're in G-d's hands.

Day +360

Here's good news: Max's immune system is perfectly normal!

Here's bad news: Max's GAG level went up in his urine study!

If this last DLI doesn't increase Max's engraftment level we will have to re-transplant ASAP.

Here's the plan: Everybody prays to G-d who has saved so many lives and already given us so much that Max's engraftment goes back up soon and without a second bone marrow transplant.

Bottom line: Please pray the best you can because we're desperate for help here.

Thank You.

Day +356

engraftment still at 15%, Max is playing and loving our new house and backyard. We all really love it so its been pretty hectic but good. I really want Max's engraftment to stabilize so that we can really take it easy for a while and just relax without rushing off here or there. I guess I want Max's engraftment to stabilize so that our lives can stabilize too. Also I really want Max to have a bath and in general do all the things normal kids do.