We went to Cincinnati Wed and Thursday he saw the EB team. The doctors said that Evan looks so good. His weight is good. They are worried about his eye lids his right one is getting really bad, he cant shut his eye all the way now. We talk about his bladder problems and there is nothing they can do. The EB is just in his bladder that's why the lining of his bladder is tearing. When it tears it gets stuck in his tube and thats why he has hard time peeing.
Friday he had surgery to change out his catheter. They also had to do some blood work to. After surgery he had to get and iron infusion done. Evans iron was 13 that is really low. It should be 5o or higher. So he got his iron infusion done and he is feeling so much better. We are still waiting for some more of his test result to come back.
When i was up their i got to meet a wonderful family. I didn't get to talk to her that long. But it was so nice to meet her and her wonderful daughter. McKenzie is her daughter and she is 10 she has EB. She is a beautiful girl and a stronger girl. Missy thank you so much for letting me come up there and seeing you and McKenzie.