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Monthly Archives: March 2017
Day +235: Kiira has been a busy girl! She attended her first friends’ birthday party, had a couple play dates, still doing gymnastics and has become quite the show off. She asks me if her clothes match and wants me to video her singing or dancing. She is attempting to ride a bike and a scooter. She can do all this and rarely gets blisters or cuts at this point. We gave her the last dose of steroids for the anemia yesterday, which means she only takes 2 medications now: miralax and an anti-reflux med. We are so fortunate, as we see so many others list off a dozen or more medications to help with all the EB complications. I’m hoping labs this week show she maintains normal levels of everything tested so we can stay out of the hospital and off medications for awhile.
I feel the need to mention that this past week a 10-year old boy and a 30-year old with EB passed away. The fight for life with EB is hard and I can’t take one day for granted with Kiira. I keep praying she will live a long life free of pain and complications; that a cure will be found for all who suffer.