This is what Evan plays with everyday. He loves his monster trucks.

Evan getting ready to go into the OR.

Evan did good today. He did get his new catheter. They call me to come and see him in the recovery room, so i got up there and he was sleeping. So i got his clothes so i could put it on him while he was a sleep, like i always do. When i was doing it he woke up and he wasn't right. So i just picked him up to hold him, and i told the nurse i said something is wrong. So we waited for a few and then she said I'm calling the doctors. Evan couldn't pee, i was scared. So finally the doctors came in, and they had to pull his catheter out some. OMG that hurt Evan so bad. His catheter was in to far and he couldn't pee. Then he was filling better i was so glade.

Evans blood is still low. They didn't give him no blood they are going to do it when we go back up there on the 20. I wish we could get his blood back up i think he would feel so much better.

I just wont to think everyone for there prayers and keep them coming. We need a cure for EB.

This is Evan's favorite truck

Evan got to go to the monster trucks. He was so happy, and we had so much fun. His eye was doing better so we went. All i can say is god is great, i prayed and prayed for his eye to heal by Saturday and it did.

My 3 babys.

Evan goes Friday and he has to get new Catheter and get iron infusion done. It is time for new tube he is hurting with this one. He does good the first two weeks then after that he is hurting. I wish he didn't have the catheter.

The last couple of weeks now he has been choking alot. I don't no what that is all about. I no he scares me when he does it. I took him to the doctor they said it was acid reflux. He is on medicine for that. So i called Cincinnati and they wont to check his airway in March, They think it might be his airway. I hope not. Evan cant play hard no more because he has hard time breathing, His breathing gets really hard. I just hope his airway is going to be okay, i don't wont no trach.

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.