Day -3: Kiira had physical therapy this morning. She went down the slide over and over and we played ball. The therapist feels she is right on track for any kid her age, but it’s important to keep her muscles strong while spending so much time in bed. Later, she had fun playing with her sisters and had another bath and bandage change. My mom bandaged her first leg and arm ever. It’s about time we teach someone else, just in case.
Her skin is looking decent–just a few blisters here and there and the eczema has cleared up. She has some scratches from the nurses doing night diaper changes, but they don’t bother her and we need our sleep at night, so we let them do it. And obviously the scab on her head from falling in the crib.
Kiira had to get her central line bandage changed again because it’s either getting wet during the bath despite trying to be careful with it, or moist from sweat. Mistakenly, we switched to a more sticky bandage because the other type kept coming off. It’s important to keep it covered because if bacteria gets in, it can lead to a blood infection–the catheter is inches from her heart. I wasn’t there, but Jason told me he’s never seen Kiira in so much pain as her skin tore off while they removed the bandage, despite using adhesive remover. She fell asleep right after from screaming for 30 minutes. We didn’t have these issues last year, but bandaging is always trial and error and we need to figure out a better method.
After a long nap, she had fun playing with daddy and is down for the night. Tomorrow is her last dose of the chemo Fludarabine. We are getting so close!
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