Thursday, January 26, 2012

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.

Monday, January 16, 2012

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.

Wednesday, January 11, 2012

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.