Day +226: We have had some great days with Kiira’s skin. We had no blisters at all yesterday and we want to celebrate those moments, but this world makes me think I’m ” jinxing” it by celebrating and being thankful, because it means the next day will be bad (I know, not very positive).
Similarly, today we had a family outing. We started with a walk and it’s not even 70 degrees, but Kiira got so sweaty that it made her face rashy and itchy. (I don’t know what I’ll do when it’s 110 this summer!) Then we took the older girls to lunch and to see Disney on Ice while my parents watched Kiira. We had such a wonderful time, not thinking of any of our cares and enjoying one of the rare times the 4 of us go out together. When we returned, we found Kiira’s knee bandages covered in blood, with the largest, deepest knee wound to date, because her bandages slid down. I read about other kids who knees never heal and the bone is showing and I pray my child never gets there, but it’s the beast of RDEB. She cried “mommy” and some gibberish as we washed and rebandaged it, and I wanted to cry, but within a minute, she was smiling and being her goofy self. EB sucks, and I want to get down and think about all the things it’s taken from us, but I can’t, because Kiira doesn’t. And we are home, with our baby girl and get to go on outings, and have many good days, and not everyone has that opportunity. We have so much to be thankful for and we have to keep fighting for all those who have lost their battles.
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