Sorry again, long time no update. Max had an MRI done and an MRS done recently to measure the amount of GAG buildup in his brain. This was done mostly as a baseline scan so that we can continue to monitor whether or not the engraftment he has is in fact enough with his ERT to live happily and healthily. Great News!!! ALL CLEAR! The MRI was perfectly normal and the MRS showed no sign of any GAG buildup. We will measure again in 6 months and we hope to have the same results again. So long as his engraftment stays high enough and his tests are normal we can avoid another transplant. G-d willing.
Now, the bad news. Max's engraftment results from last week were 11% which is in fact a new low. Please pray that it never goes any lower and bounces back so Max and we can continue our very blessed and happy life. I guess we can never just have too much good news in one week, otherwise it'd be weird and we just would get confused, lol!
Thanks for keeping up with us :) Much love to you all!
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Yana,
ReplyDeleteThanks for the update.
I don't know whether to dance a happy dance or cry and pound my fists. But I'm guessing you don't either.
So, I'll keep dancing as long as I can. I'm sure that you all will do the same.
exactly right! We're dancing for as long as possible :)
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