EB AWARENESS WEEK OCT. 25 - 31.

We need to fine a cure for this terriable illness. So spread the word out. My son and all of the other EB kids an adults suffer so much.

Evan is doing okay. He is still having problems peeing. So i called the doctor today to get some answers, why is he still hurting to pee. He has a stint in. His doctor is out he wont be back until later this week. We think it just sting him when he has to pee and he knows it and he don't wont to pee. All i wont for Evan is for him to be able to pee with out hurting. I just don't know how he does it. His skin is looking really good. I'm so happy for that. His breathing is still the same he has good days and bad days with his breathing. His teeth are still hurting him. When we go back to Cincinnati I'm getting them to do his dental work. Richmond wont do it until we get his airway check again. I just no that he cant wait no more he needs his teeth fix. They hurt him so bad. I still say that's why he isn't eating, like he should.

He don't like it outside much hear lately why i don't no. i think his eye has something to do with it.

It's almost Holloween i cant wait. Im taking him out this year to get him some candy. he is going to be a little monkey. I hope he will wear it. I will take lost of pictures.

Just remeber EB awareness is this week.

This has been a crazy week. We left Tuesday to go to Cincinnati Evan woke up with a corneal abrasion. But he slept on the way to Cincinnati. The first day we saw the eye doctor and the ENT doctor. The eye doctor said he had a bad abrasion. The ENT doctor said his vocal cord are swelling. He said he need to go to the OR and get his airway check. So that was schedule for Friday. Then the next day we went to see the EB team. They did some cultures on his wounds. They also looked at his penis, because he has been having problems peeing still. So he said when he goes to the OR, they are going to open him and put a stint in. So Friday comes and his surgery isn't until 3:20. So i new it was going to be a long day. The doctors was running an hour behind. I said OMG. Evan did good he slept alot that day. He went into the OR it took awhile. I talk to all the doctors when they got done. The ENT doctor told me he will need a trach really soon. His airway is getting smaller, so that is so scary. Then the Urology came to talk and he said he put the stint in and cute his the skin more. He said that we need to keep it in as long as we can. So we are hoping when we take it out his hole will stay open. Then they did some blood work to. His blood work came back and his iron is low again. So he will need iron infusione done again.
So any way Evan little boy part is sore. But he was so glade to be home. He has played and played. We are so glade to be home. We was going for 5 days.

Evan got him a pumpkin




Going on a hay ride.

Hannah had surgery yesterday she had 6 teeth taking out. She did really good. She is hurting today, she is out of school the rest of the week. So today is going to be a long day, she don't feel good and all she is doing is crying. There is nothing that i can do for. But i do love on her to make her feel a little better. I hate to see my kids in pain.
Evan is doing good. He is getting blister all over him. His diaper area is really bad. I took him to the doctor and they are putting him on some antibiotics. He has a lot of sores with yellow stuff coming out of them. We are going to Cincinnati next week.