Evan has had corneal abrasion now for 8 days. He has been in so much pain with it. I hate them. This is the worse part of his EB. I had to take him back to the eye doctor again today, they said if no better by tomorrow they might put a contact lens in. I don't no if i wont to do that.

Evan goes back to the OR next Friday to get new catheter in. Then we start going every two weeks and he will get new catheter, he will be awake. I hope he can do it awake and its not to bad on him

Evan didn't get to go to school this week because of his eye. This week has been so stressful. Evan wont's me and only me i couldn't do nothing. Then when the girls got home from school they got mad because i couldn't do much for them. I try to tell them that Evan is scared and in alot of pain when his eyes are like this. So they understand but they wont there mommy to. I just feel so bad sometimes i just don't no what to do. Sometimes i wish i had some help, but i guess it wouldn't do no good. Because he wont's his mommy and so does the girls.

Saturday we are going to the monster trucks. Evan loves the monster trucks. I just hope his eye is better. The kids are so happy to go, and i hope we have so much fun. I can't wait to spend the day with my baby's. Evan's grandparents are going to so we will have so much.

Tripp had junctional Epidermolysis Bullosa. The same kind as Evan. Tripp got his wings and now he is pain frees. He has touched my heart, his mommy was the best mommy she did everything she could for her son. Now he is with Jesus an pain free and playing his drums and watch over his mommy now. We need a cure for EB.

Evan had to get another catheter put in yesterday. When they go in and take the old catheter out it is getting stuck to his skin and its tearing his skin. So we are going to try and see if we go and change his catheter out every two weeks. But we are going to have to do it while he is awake. We are going to do it in the OR and if he cant take they can put him to sleep. I hate this catheter he still hurts and still has hard time peeing. I just wish he could pee right. I hate to see him in so much pain.
His skin is looking really good. His noise is healing now if i can get his eye lids to heal his face would look great.
He is still going to school and he is doing so good with it. He don't cry when i leave him now. So that makes me feel so much better. He talks about school now, and he talks about his favorite teacher. He has to make sure she is there before i leave him.

My 3 baby's on Christmas eve.

We had good Christmas. Christmas day we took it easy we stayed home most of the day and the kids played with there new toys. He got train table and he loves it.

Santa came to our house today.

Christmas 2011

Evan had his surgery he did good. The urology doctor is going to change out Evan's catheter every 3 weeks now. Because he just cant make it to the 4 week. The ENT doctor check his vocal cords and everything is still the same looks okay. His noise got clean up they silver nitrate it and it looks really good. I just wish it would heal. They did a biopsy on his tongue to see what it was. we will no something in couple days. I just hope its nothing.
We went and say the eye doctor to and his right eye lid is missing alot of skin. He is worried about his eye. I have to keep his eye good and moist all the time. IF not he said he could lose his eye sight and we don't wont that. He said that we will have to do some skin grafts if no better soon. so i wont that now why wait. So any way we go back there in 6 months and if no better he will do some skin grafts on his eye lids. It will help for awhile. The only thing that will help it heal all the way is a cure for EB.
We go back to Cincinnati to the EB doctors in March. When we go up there i hope they will do it while we are up there. But i no they wont. But I'm going to see what i can do about that. I cant wait to go back up there and see all the doctors. I just wont to thank everyone for all the prayers for my son.