Happy upcoming Halloween everyone, stay safe and enjoy the parties. Max's engraftment went up a little bit to 18%!!! Although it doesn't change anything really, it is better than what we have been expecting and does give us a little bit of hope. Our doctor said that we could easily wait a few months if nothing changed and she doesn't think that Max is getting any GAG deposits in his brain for now. She does think that his engraftment will eventually start going down again though. So a couple percentage points up was a very pleasant surprise. Also his last GAG test found even fewer GAGs in his urine, about 30 was the number. When we started looking at a second transplant it was around 60, then went down to 44 without ERT. Max's GAGs going down to 30 which is very close to normal range is a good thing, but also to be expected with ERT. We're really praying hard that Max's engraftment goes up to a level where we know for sure it is safe for his brain and he doesn't need any more ERT, a consistent 25% would probably be great...
The not so good news is that Max will be needing surgery for his trigger fingers. From what the doctor explained and I read online, it is better to get those fingers taken care of as soon as possible so there is less risk of permanent damage. We went to see the hand specialist and he also said that Max may have some very early signs of carpal tunnel syndrome. We'll get an EMG to test if he does on Tuesday and then decide on a surgery plan. Most likely, Max will get his fingers and his carpal tunnel (if it exists) done in one surgery and G-d willing it will be a smooth success. It does break my heart a little that someone is going to cut into my baby's sweet little hands, but compared to everything else Max went through, I'd say this is less scary although we will be dealing with anesthesia which is never good for a little MPSer. Anyways, we'll deal with it as necessary.
The happily usual news is that Max is growing and playing and learning and we went hiking again in our park today.
Thanks for keeping up and have an enjoyable Halloween!
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