Wednesday, April 14, 2010

Day +238




Sorry for the lack of updates... Our latest engraftment level is 24% and at this point I would just like to at least know that its for sure enough enzyme for Max to live a normal independent life. Max still isn't walking, but the Child Evaluation Specialist came by last Thursday and said that she expects him to walk any day. She did however say that he is a little bit delayed in speech and fine motor skills and recommends that we get one hour of speech and one hour of occupational therapy every week! I'm very excited to have the help and I'm hoping that Max will thrive with the extra interaction. Him hanging out with just me and in just one room all day every day can't be helping. The First Steps coordinator even found a Russian speaking speech therapist so we'll just have to hope that she's available.
We all got sick on Monday night. First, I spent the night in the bathroom. Then the next day on Tuesday Max and Roman both sick and I was better. But switching Max from formula to Pedialyte did the trick and we're back on track today. Luckily Max's temp. never got higher then 37.3C so we didn't have to go to the hospital. We did quite a bit of praying though yesterday and were pretty worried.
On Friday we're going to do another d.l.i., aka boost of donor cells and take an engraftment test. Also, we're still waiting for the results of Max's immune study to see how much of his immune system has returned. I'm really hoping that he will be able to go outside without a mask and get to play in the grass. I think he'll really enjoy it.

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