The MRI went smoothly. The anesthesiologist listened to Jon and adjusted some things, and it seemed to be good.
There is not a glioma on her eye. Her plexiform neurofibroma is about the same as it was last time. (They were concerned about some abnormal tissue in her right cheek, but that's where she fell down the stairs the other day. It was a particularly bad bruise.)
We are taking a break from the Koselugo for two weeks to work on getting her rash under control. We have a new steroid cream to use.
Her TSH went up, so they have upped her levothyroxine dose again. I don't know what it means for the T4 number to be good but TSH to be high, but we have another Endo appointment next month.
Posted by
Heather Daley on
February 5, 2026, 8:11 pm
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