3-Year Checkup, Day 5: The Good, Bad and Expected

Because my flight was cancelled, I had to listen to what the doctor was saying over the phone – which is a bit difficult when you have a child that sometimes doesn’t understand voice control. While I didn’t get all the information, I did pickup both good and bad things.

An MRI of the brain showed improvement over what it was last year, which the doctors like. This follows the theory that progression of the disease will stop and that it could actually improve. I didn’t get to hear all of it, but I imagine it’s the buildup that Hurler’s causes that is continuing to be cleared out. In other words, (if my theory is right) the missing enzyme that was introduced with the transplant is doing exactly what it should be doing.

Glasses is no longer necessary anymore either. His vision has returned to one of a normal four-year old. He normally had an astigmatism, but apparently that has gotten much better. So with his corneal clouding being minimal in addition to the astigmatism getting better, they see no reason for him to wear glasses anymore.

His facial features also continue to improve and lose the “Hurler’s” look which is also common in post-transplant kids where the coarse facial features that they have will slowly fade away. The doctor commented again this year at how much less he is looking like a child with MPS.

Otherwise, almost all the tests that the doctor received was normal or he thought there was nothing to worry about.

Unfortunately, it sounds like there may be some surgery needed on his left hand within the next year due to a potential development of carpal tunnel’s syndrome in his left hand. Occupational and Physical therapy was recommended, but the doctor stated that whether it’s three, six, nine months or a year … surgery on his left hand will probably be necessary.

All-in-all though, it’s what we expected. While the transplant does fix a lot of things – there can still be issues that will need to be dealt with. But, for the time being – outside with getting him to a few doctors and into the therapy, it’ll be back to a normal life for him once he gets situated in Michigan again.