We deferred Maggie’s 2 year post-transplant studies until August since the end of June was incredibly busy, and I didn’t want to deliver Orly early and have to reschedule. Also, the COVID policies were still evolving and I didn’t want to miss several days of work right before I take an extended leave for the baby.
So this week we spent Monday-Wednesday at Duke for a sedated MRI, skeletal survey, echo, chest xray, pulmonary testing, labs, and a visit with the transplant clinic. She also has ortho, ENT, developmental peds, carpal tunnel testing, and ophthalmology coming up, but we spread those out a little. She did great with all the testing, overall, except they gave her some Versed before the IV placement for her MRI and she got MAD, which I think was perhaps paradoxical stimulation from the meds because she doesn’t usually get mad like that. Anyway, we are still waiting on her transplant studies (chimerism, immune function and enzyme levels), but her other stuff overall looks fine. Her back kyphosis (hunchback-ness) is a bit worse, which is a bit unfortunate although nothing to do about it yet, and she is developing trigger fingers and may have some chronic GVHD of her scalp, but those are all manageable updates (and none are surprises to me). All things considered, she is doing GREAT from a transplant perspective and as expected from an MPS perspective. We could really use a cure for that pesky MPS.