Sunday, October 30, 2011

We got some snow this weekend. So the kids played out in the little bit of snow we had.

Evan is having hard time with his catheter right now. He is having surgery on Tuesday to get new catheter. I hope it stay open until then. Last night at bath time he screamed he didn't wont to take bath. He said mommy no please mommy no don't flush my tube, don't wash me, it hurts me so bad. That just breaks my heart. My little man has to deal with this everyday.

Friday, October 28, 2011

Chy Evan Hannah

Me and the kids carved pumpkins last night. Evan didn't like the stuff inside of it. So me and the girls cleaned and carved the pumpkins. When we was done Evan love the pumpkins.

Evan has been doing okay. He is having surgery on Tuesday he is getting new catheter again. I hope it makes it until Tuesday. He is having hard time with it right now its getting clogged up and he has UTI.

EB awareness is this week and we need a cure for EB.

This is why we need a cure. I have to watch my son cry to pee, or i have to watch him scream when he has bowl movement. I just hate it. Or when i take his diaper off it is stuck and i tear is skin. Or when i take his bandages off they are stuck and i tear his skin again. Or when i put him in the bath all he does is scream. There is so much that he deals with he stay in pain all day long. Its not far. I pray everyday for a cure for EB.

Tuesday, October 25, 2011

EB AWARENESS is this week.

We need a cure for EB.

These kids dont need to be in pain all the time.


to learn more about EB.

Evans foot.

Evan eyes they wont close no more.

Evan blister on his foot.

Sunday, October 16, 2011

We are waiting to hear back from Make A Wish Foundation. They came and interview us last week. Evan wish is to meet Denis Anderson he drive Grave Digger and he wont to ride in Grave Digger truck. Then he wont the power wheel Grave Digger. I just cant believe we got interview with them. He love Monster Trucks. That's all he plays with, he plays with is trains to.

Evan has been sick on and off for the last month now. I think I'm going to take him out of school i hate to do that because he likes school. He don't like me leaving but after i walk out of the room he is fine. They say he does so good. He talks to them and he does what everyone else does. School makes him so tired, when he gets home he lays around the rest of the day. I don't no what he will do when he starts school all day long.

Tomorrow he goes to the pumpkin patch with his school. We are going to have so much fun. He will love it. But he will be so tired when we get home.
I took the kids to the pumpkin patch last weekend, Evan didn't go because he wasn't feeling good. He is going Monday with his school. The girls had so much fun the weather was nice. I wish Evan was with us. I hate when he cant go.



Lucas Chyanne Hannah

Wednesday, October 5, 2011

Evan has his surgery yesterday. It take us two hours to get there and he cant have nothing to drink and he did great. When we got to the hospital he was okay until they called us back to the room. He was mad and he was a hand full. The doctor came in and he said we will get him back in the OR now. And they did, i couldn't believe it. So i carried him back to the OR, i was holding him while they put the mask on his face. We got him on the table, i kissed him and told him i love him. So i went back out to the waiting room and got me something to eat. Wait for the doctor to come out and tell me what he did.
So the doctor came out and said Evan did fine, he clean out his bladder, put his new catheter in. He said i can come back in few they was putting his dressing back on. So i waited for them to call me back. So finally i got back there and he had some oxygen on him so i started freaking out. They said he is okay. But his airway didn't wont to stay open in the OR. So they had to give him some oxygen. So finally he woke up and he told me, I'm a wake and i got my new tube. Man i love that boy. He is so strong.
So we came home and he laid down for awhile. I asked him if he wont's to go out on the porch and get some sunlight. The weather was nice it was cool and the sun felt so goo. That even got him ready for bath and he was in some pain. After the bath he was still hurting. His bladder was hurting him so bad. I put him to bed and he went back to sleep. I'm not sure why his bladder is hurting him so bad.

Monday, October 3, 2011

Evan is having surgery in the morning. He has to get another catheter put in. I wish Evan could pee right so he wouldn't have to have all these surgery. I hate to put him to sleep. Evan diaper area is still really bad. He has yeast like i have never seen before. He is itching so much now i don't no what to do. His foot is getting better. He can walk and play now. The weather is getting cooler now, so hopefuly we can go outside and play.

Please read Tripp blog. He has Junctional EB like Evan. Tripp can't see no more. His EB took his eye sight. He is two year old boy that cant see and he cant go out side and play. His mommy is a wonderful mom. She is with him all day everyday. We need a cure for EB.