Wednesday, March 30, 2011






This is what Evan does all the time. He love his trucks.


video
Evan is still having problems with his bowls. All of his test came back okay. When we go back to Cincinnati April the GI doctor there is going to look and see whats going on. I hope its nothing. He is peeing good now. When we go back to Cincinnati in April Evan is getting lot done to him. They are going to check his eye, dental is going to go and look at his caps to make sure they are doing okay and he will get a cleaning done, they going to change out his catheter and the GI doctor is going to see why he hurting to have a bowl movement. His hip is getting really bad again. I cant get it to heal again. They was healing up really good. Evan is doing really good he up playing and we have been able to go outside and play. Let me tell you he loves it out there. This week it has been cold and nasty so we haven't been out much. I hope this summer it don't get to hot.

Saturday, March 19, 2011

Evan is having hard time with his bowls. We are checking his stools to make sure he don't have no infection. He is hurting when he has bowls movement, he has a lot of gas to. He has a bowl movement 3-4 times a day, and its not hard either. So i don't whats going on.
Evans tube is still hurting him, but not as bad as it was. So thank god for that. He is peeing good. I think the medicine has helped out with that.
Evan eyes are still hurting him a lot. I got him some sunglasses to wear, and he wears them. But now he is getting blister behind his ears for the sunglasses.
Yesterday was so nice outside. So we played out there all day long. He had so much fun. I'm so ready for summer. But Evans body isn't. He is getting so many new blisters now, and i no its because the weather is getting warmer. He is getting hotter. Evan is getting blister from his bandages now. But he has to be wrapped up or we will have bigger problems. So i don't no what to do about that. I wont him to go outside now before it gets to hot and he cant. He loves it outside.
We go back to Cincninnati April 13 to change out his tube and get his eyes looked at.

Saturday, March 5, 2011

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.