Kids putting the ornaments on the tree.

Evan has been doing better. We have put our stuff up for Christmas and he loves it. He says when Santa coming.
Tomorrow I have to take Evan to UVA to get his new catheter and talk to the doctor about trying something else because his catheter hurts him so bad. He also has to get his blood checked. We haven't had it check in two months so we will see if he needs iron infusion. I hope he wont have to.
We are still waiting to get his grafts done, the insurance is denying it. We are staying on them. If they don't pay for it, I'm going to pay for the rest of his eye to be done. He needs it done and i think it will help him feel better about his self. The graft on his eye lid took and its doing great.

Evan has been sick. He had the stomach bug. It was bad. He is feeling so much better.

We went to the mall today to get out of the house. Because i was going crazy for being in the house all week. They had the train there. Evan loves trains. So him and his sisters rode the train couple times. Santa was there but they wouldn't go and set on his lap. Maybe next time.

 

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 When we go out everyone looks at Evan and say some stuff. I try to be nice and go on. Well today i didn't. I had my cards with me and gave them to people that looked. I had two men come up to me and say whats wrong with your son, and i told them. He said can we pray for him i said yes you can. There is nice people out there.

We are still waiting for the doctor to call about his skin grafts. We are waiting for Evan insurance to approve it. We are having hard time. You no that makes me so mad. If this will help him he needs it. But I'm going to keep on fight to. His graft on his eye work so why cant we get the rest of it done. He deserves it. All i do is pray that the insurance will approve it.

http://www.youtube.com/watch?feature=player_embedded&v=OzatYr2tbaY

Happy Halloween

 

 

 

I hope everyone had good Halloween. My day started i had to take Evan to UVA to get his catheter change out. Then after he woke up from the his surgery he couldn't pee again. So we had to stay there for long time. We didn't get home until 7:00. I was so mad. Because i wasn't home with my kids to get them ready for trick or treat. Chy went with on of her friends and Hannah went with Becky and Lucas. So when we got home i got Evan ready and we went to Tracy moms house. We only went to couple house because Evan wasn't feeling good at all. They made us dinner and we went home to eat. The girls finally came home and they told me all the fun they had. Man i wish i was with them.

 

 

 I got on Facebook that night and everyone had pictures of there family have so much fun trick or treat. I wish i could have post picture of my kids. But i couldn't Evan wasn't feeling good so i didn't get no picture of him. I just wish his EB would let him have fun one time.

Last year we wasn't home for Easter because he was sick, he didn't get to go on his field trip to the pumpkin patch because he had abrasion in his eye. then he couldn't have fun on trick or treat. EB is so horrible i hate it.