Hi there! Just a quick heads up that Gracie is doing well. She had ERT today, so it was a long day. They did see Dr. Orchard very briefly, who agreed with the dermatologist that the rash on Gracie's stomach is not a symptom of GVHD. He disagreed about eczema though. He thinks it's just hives of some sort.
Gracie doesn't love her little mask, now that she has to wear it for longer periods of time. It just looks uncomfortable, honestly. It's so big that is almost covers her eyes... Oh well.
I got to experience Sarah's personal hell today with the medication schedule. There are so many doses to give. The IV meds take an hour each to run. Basically, it's all she has time to do, and still can't get a good night's sleep! It's hard to imagine squeezing daily clinic visits in. Also, no word on how PT, OT, and Speech will all fit into the post-discharge routine. Add in to the mix the elevated risk of a mishap or infection on the outside, and its almost better to be stuck in that tiny room a little longer. But she is out, that's what matters most right now. We'll get the hang of the meds schedule, but just a warning to Noni to get ready to work. :)
That's all for now. Numbers were great again today. WBC = 6.something and ANC = 4.something, as you can see on the nifty chart on the right of the web page that Daddy made. Thanks daddy! Pray for Rylie (our buddy from down the hall) to keep making improvements. We want her out soon so Gracie will have her buddy at the RMH.
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