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E N C A N T O
The music and graphics of Encanto get her smiling every time.
And that fuzzy hand? Yep. She dances right along with the characters and it’s the cutest thing.
Encanto helped her past the time at clinic today, so it’s her “movie of choice” for the moment.
Speaking of clinic, it went well enough.
Her liver numbers are “stable” and they’re going to watch her GVHD over the next week to see if that’s the cause.
If her skin and numbers don’t improve by next Wednesday they’ll start her on oral steroids.
We’re REALLY hoping to not have to put her back on steroids, so praying her GVHD improves.
Plus, if we can get her GVHD under control she can switch to bi-weekly clinics!
More good news?
She should only need one more TMA infusion!
That means her red blood cells are behaving AND she won’t need the $30K med any more.
Also good news: she’s gained weight! She’s almost up to 20 pounds!
Finally, they’re taking her down a whole 0.1mL on Methadone!
We’ve been doing .05mL tapers for the past few weeks, so hoping she continues to do well with it.
Whew. Busy clinic day, but overall a good visit.
Here’s hoping she keeps trending in a good direction and that her GVHD gets under control before next week.