11/24/18 BMT Day +207 THANKSGIVING

My family celebrated the most wonderful Thanksgiving together. The sweet potatoes, turkey, stuffing, mashed potatoes, etc were fantastic, my hat off to the chefs. My parents delivered a traditional Thanksgiving dinner, packed with love, in the trickiest of settings. Reese and I received pictures at the hospital while Quinn and Claire helped in the kitchen at the Family House. Then Reese hosted, in her hospital room, and we came together as we always do. While all of these hearty, autumn foods are the building blocks of the tradition, the most important is family. We missed the family that we couldn’t see and were so grateful for the family that was with us at our table. The greatest sounds of the day were the giggles coming from my three little turkeys. Thank you God, for the miracle of health.

Reese had a busy Thanksgiving from a medical perspective, too! She is officially CMV NEGATIVE. That’s right, if you know Reese, you know that we have been waiting for this pesky CMV reactivation to go away for many months. It was causing little problems all over the place. Reese’s oral steroids tapered to 0.6. Yes, that has happened before. As we switched doses (from q.8 hour to q.12 hour) and then switched steroids from IV to oral, the dosing jumped up a few times to do this safely as we transitioned between different steroids. This is why we are not actually reaching that magical number of “0.5” until next week. But each steroid change and taper has been successful, God and our doctors have been working overtime to keep Reese safe! Reese is spending more and more time unhooked, able to move about “freely” (while holding someone’s hand.) We go on many scavenger hunts now… that is our newest adventure in the BMT unit. It’s kind of like an Easter Egg hunt, my girls carry pink buckets and search high and low for little things (like Shopkins and Hatchimals.) Reese continues to gain strength, though it is very easy for her to fall. Her entire body is so fragile. But she is tough and works very hard to regain the mobility of a 4-year-old girl.
Now for the problem. Reese’s albumin continues to be too low. The big challenge that still lingers. I pray for wisdom for my doctors, to get to the root of this problem. Right now, it is the thing that will keep us in the hospital. Everything else is falling into place. I pray that a mid-December discharge will be appropriate for Reese, and that she will be, in fact, truly ready to walk out those doors this blessed season.

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