6/23/18 Day +52 Toci

Reese has a lot going on in the gvhd medicine department. She is now on four meds to combat this serious illness, #s 3 and 4 were added since I last wrote. The third med, toci, should show signs of working in 1-2 days. We see the signs! Last night she slept well!!!!!!! This tells us her pain is decreasing (just nights before she was up every hour.) Her volume loss is down too. 1 liter is the marker for really bad and she was at 1.6 a few days ago. We closed out the past 24 hours at just under a liter. This is all VERY exciting!
Today we bought Reese her very own mini ice trays, they make ice cubes about 1 cm cubed. Reese can’t have anything but “sips” by mouth, and stopping a ravenous 4-year-old from gulping is near impossible. (Too much sends her tummy into a tizzy.) Well, the answer is ice chips. But, BMT kids can’t have regular water, and the hospital doesn’t have a way to freeze purified water for them. I got a tip from one of our favorite nurses and now Reese has mini ice trays! She is SO HAPPY! She is still pleading for food. But the ice chips bring her some smiles and relief.
Reese has the joy of TWO grandmas in SF right now. Pictured below are special times with both grandmas over the past day. She fatigues in minutes, but she gets so much joy from “normal”. A new activity with the expectation that she will tire, but the presentation that she is strong and capable is key. Because she is strong and capable, capable of a little more each day. Reese’s village is special. I know this. Today she spent time looking at Rock Reese’s Socks (her FB page.) She comments in her Reese way when she has the strength. It was also NATIONAL WEAR PINK DAY (yes, this is a thing) and she looked at pictures of her friends in pink, too.
I hope to post more good news in the next couple days, GO REESE!!

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