Day +125: With November being a month to focus on thanksgiving, I have been contemplating all the things I have to be so thankful for: my family who is so helpful to me and with my kids–especially this week with my aunt and uncle being here so early to care for Kiira in the mornings, for my girls and the past 6 months we had together to bond, but also for their school where they started today, and for the prayers and support of so many friends and strangers who have helped us through the past year. I look back to last November and I couldn’t find much to be thankful about in the midst of learning how to care for Kiira, so I have a lot of making up to do. God has worked in amazing ways to show me that no matter what we go through, He is there.
The past few days have been good. Relatively uneventful and Kiira has been doing great. Today she had labs drawn and she didn’t fight it when they held her to draw blood. They got it in one poke and she cried for only a few seconds. Such a difference from last week! She also had her 1-year well checkup and everything looks good.
The girls had a good first day of school. It was more sad for me than I expected. Last year I couldn’t wait to have them out of the house, but all 3 girls have bonded so much and I’ve loved my time with them. Even though Miia would fight me about homeschooling, it was amazing to see her read a book or figure out math problems on her own. However, because I do work part-time, the time had to come when I couldn’t be with them 24/7.
All was good until this evening. Kiira was playing by the fridge until I turned around, took a step and felt her hand beneath my foot. My heart sunk, she screamed as 3 of her fingers filled with blood because I tore the layers of skin apart on them. I knew I had to poke them immediately or the blisters would grow. I don’t know how many pokes I did, but more and more blood and more pokes and squeezing and tears… It was awful. I remember reading a book or blog about someone who did that to their EB child and degloved their entire hand. I was horrified and try to never to take a step unless I know where she is. I get on the girls all the time about it, but I was flying solo tonight and in too big of a hurry to get things done. I have no idea what I’ll see tomorrow but I pray, pray, pray, for quick healing and that the blisters won’t have grown or cause fusing. To be thankful for something in the situation–she was incredibly subdued for bandage changes so I got them all done by myself without any further issues.
