Day +13: The GCSF did its job and boosted Kiira’s white blood cells. It’s kind of a false boost, since her body can’t maintain it on her own, but she’ll get there eventually. She still has her rash and we think it might be from her anti-fungal meds, so we’re experimenting with Benadryl before she gets it. She is also getting some viral tests done to rule out a virus. I think they’re kicking us out tomorrow so today Kiira wore a mask as I pulled her in a wagon around the halls. She loved being out of the room and giggled as I showed her pictures on the wall. It made me excited to bring her home, as the therapy of being outside and with her sisters will probably be better than anything else.
Kiira also saw a speech therapist just to make sure she is on track with words, swallowing, and eating, and she reassured us that her tongue is not fused to the floor of her mouth and even her gums may not be attached to her lips like I thought (or not as severely as I thought). Praise God! EB is severe in so many ways, but I think the fusing of all the body parts scares me the most for some reason. Anyway, she is on track and I fed her food for the first time in over 3 weeks. She loved it and kept it down.
Her hair is really thin now, so I put one of her new headbands on (thank you to the person who sent them!) and I know I’m biased, but I think she looked so cute!
Pa went home today and the girls are sad that we don’t have another visitor coming tomorrow, but at least Kiira should be home.
Please pray we can keep Kiira healthy and her sisters will respect the boundaries we put in place and Kiira’s cells will grow and repair her skin!
WBC: 4.8 (L)
ANC: 3.3
