Day +30: Kiira’s clinic appointment today went well. Her WBC counts are up slightly so it kept us out of the hospital, but we have to go in for labs and a blood pressure check on Sunday since her blood pressure and hemoglobin are low. Like our doctor said today, her engraftment did what it was supposed to and now we are just cleaning up the mess that chemo made on her body. Kiira is in good spirits, but still throwing up 1-2 times a day. She is getting super smart about all the things done to her and is so agreeable to just sit while her IV is in and to do meds. She says, “Yay heparin!” and “Yay Dr (insert name)!” and knows when it’s time to flush an IV, which is funny, but she isn’t even 2 and already knows these things. The picture is of our morning set-up, which takes me about 90 minutes to complete on Kiira. This is nothing compared to 4-6 hour bandage changes that would be in our future if it wasn’t for a successful BMT or eventual cure.
So the big question–how is the BMT helping her skin? I think it’s too early to tell, though her skin is so soft, not dry anymore, heals quickly and we have only had a couple blisters on her feet that she specifically injured and on the bald spot on the back of her head. Skin improvements are typically seen over the course of years so though I want to be optimistic and hope the lack of blisters are permanent changes, from all I’ve heard, it’s too early to tell. But whatever it is, I’ll take the current improvements.
I’m so thankful for the prayers and encouraging words. I’m praying that God works a miracle here.
Follow on Facebook
- $0 / $20,000
EB Kids to follow: