11/12/18 BMT Day +193 Sleeping Arrangements

Reese had another good day today, progress is great. When our favorite Christmas tune came on (Jingle Bells by The Countdown Kids) she grabbed my hands and started dancing. Quinn joined in and it was the highlight of my day.

Today Reese started steroid cream on her lips. It is possible that she has gvhd of the lips, her ultra dryness began in June and has persisted. We are hopeful this cream is the little boost she needs to conquer this little problem.
R- I don’t like the taste of it. It tastes like peanut butter and worms.
Me- Yucky.
R- Yes. Don’t even think about it.
She’s so funny.

Her steroid “lateral move” to oral went well. (YES, oral steroids to fight gut gvhd!! Every time I think about that I am so thankful!)

To shop or not to shop. What a very silly question.
This weekend fashion met function, we received two fun pop-up stores. Just in time, Reese’s restrictions were lifted because she tested negative for all viruses (that they ran after her random fevers last week.) So we ventured back out into the hallway for a little retail therapy!
First to arrive, the Old Navy Pop-Up Store. A friend from the unit left last month (this is Reese’s little friend, a sweet three-year-old beating neuroblastoma.) Her parents work for Gap Inc and they passed Reese’s “shopping” story on and we got a package from corporate. So sweet and thoughtful. Her very own personalized pop-up store, to share with Quinn and Claire (they even got all of their sizes right.)
Second, a GREELEY pop-up store from a few of my teacher friends over at Greeley. (Thank you Steph, Leslie, Jen and Suzanne!) This is where I taught second grade for over a decade before having my kids. The store was filled with fun learning tools and Greeley gear! They loved it. I should add that from seeing this, my girls now know how to spell GREELEY, and Reese really thinks it’s cool that part of her name is hidden inside.

I am thankful that I get to sleep next to Reese six nights a week. I love hearing this tiny voice whisper, “hold hand?” in the middle of the night, because my sweet girl wants to hold hands. And I am grateful that I can push my bed right up next to hers and be this close. I am also thankful that I get to sleep with Quinn and Claire the 7th night of the week. Yes, that’s right, I sleep in a room with them, too. My family has been living in the space of a dorm room since May, and my husband sleeps in a small room with Quinn and Claire. So when we trade on Friday nights, I get this spot. There’s nothing better than the hugs and kisses I get each night and each morning, and I am so thankful that they are mine to get.
Praying for a week that is fever and complication free. And I am asking for the additional blessing of continued recovery from GVHD and TMA. Amen.

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