I can't believe it has now been 7 months since I have updated this blog. I apologize to everyone reading and to everyone that gave up and is no longer reading. I understand.
We've gotten so used to our almost perfectly normal happy lives that I've lost track of the blog and even new MPS drugs. I guess I've gotten comfortable.
Max is doing well so far. We've tested his engraftment level monthly and the most recent result was 11%. His MRI and MRS has shown normal brain. We have some appointments coming up on September like ophthalmology since Max's right eye looks a little lazy sometimes when he relaxes. We also have ortho coming up and a visit with Doctor D. So far, thank G-d, no serious bone issues or brain issues although I am a little concerned about the ophthalmology visit and Max's eye health.
Max loves school and went to summer camp this year and loved all of the awesome field trips. I have been busy working and so has Roman. I guess this is pretty much what we were hoping for! Thank G-d!
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So glad life has been so great that you forgot about MPS, that's great!!! We will be in Ohio in September also, when are your appointments?
ReplyDeleteUnsure yet. Thank You! I think we're trying to get something scheduled for the 21st with ortho and with Dr. D.
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