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Powered by LifeTypeWell, it's been a couple of months since we posted an update. We're thankful for this break from medical appointments.
With the dry weather, Grace's skin has really broken out. It gets dry and itchy, and then she scratches so hard that she makes herself bleed, and gives herself welts. So our nighttime routine involves slathering her with cortisone and Vaseline before she puts her pajamas on. I've also tried cutting her nails more often and filing them more often, but the thing that works best is just having her wear mittens to bed. Her pain tolerance is still so high that she doesn't really realize that she's scratching herself to excess.
Wednesday, she has her long MRI, for which she will be sedated. This will be to get a good detailed baseline for checking out the possible tumor on her eye, and for checking on her ear tumor. If her ear tumor is looking good and small, we may take a break on the NF medicine to give her skin a break.
Yesterday, we went out to dinner to celebrate two years since Grace's transplant! (The official day is next Sunday, but this night worked out better.)
Some Grace quotes:
12/23 - "The big toe is called 'Market.'"
1/9/26 - I exclaimed, "How can it be Friday again!?" And then Grace said, "Mom! It's 'cause the calendar goes 'round and around and around. That's what it does."
And pictures of a happy shoveler during the big storm:
