Saturday, July 31, 2010

We got to go outside today and play it was so nice out there. I hope it stays like this.

Evan is doing okay. He is having some problems with his teeth they are decayed. So we will be going to Cincinnati so they can fix his teeth.

He still not eating but i guess he don't wont to eat. He is still drinking. So that's good. His toes are really bad they are hurting him so bad. I just don't know what to do with them. They have a bad smell to them to.

Hannah did good with her scoop. They didn't fine nothing so that's good. They are still wait for some of the stuff to come back, but he said everything should be fine. So i was glad about that.

He loves his tractor that his granddaddy got him.

Evan is fixing the step.

Tuesday, July 27, 2010

If it don't cool down we are going to go crazy. Evan wont's to go outside and play and he cant. He will look outside and watch his sister play and get so mad because he cant go out there. We did get to go outside yesterday even. It cool down some. Evan had so much fun, he didn't no what to do he was run everywhere. It was so good to see him like that. Evan was running after his sister and he fell and the skin on his knee was gone. So we had to go back inside and fix it. His legs was looking so good. Hannah came in to check on her brother she said I'm so sorry Evan next time we will walk. That was so sweet.
I wont to take him to the zoo. So i hope it cools down. I wont fall to get hear so bad. So Evan can get out and have some fun.

Sunday, July 25, 2010

Thanks Casey, I'm going to email you. We was up in Cincinnati in July Dr. Azizkhan open him up and he said he would hope this would help. It is all scare tissue. We do use and Steroid cream on his penis. I talk to Dr. Azizkhan on Friday and he said that he wont to but a catheter in him for 3 weeks then take it out and see how he does.

Evan is doing good right now. His skin is looking good. He is feeling good. He can pee right now. He still not eating but he will eat when he gets hungry.

Thanks Blamca. I'm going to post it on the EB page i just haven't done it yet. I have talk to people on face book about his peeing. They have told me what to do, but we have done all of that. The doctors just cant believe he is closing up like he is either.

Hannah goes in Friday for and upper Endoscopy. So i hope everything turns out okay.

Tuesday, July 20, 2010

I had to take Evan back to the Urology today. He was up all night because he couldn't pee. So the urology open him back up. I'm so tired of seeing Evan in all of this pain when he cant pee. There has to be something they can do. I'm waiting for the doctors in Cincinnati to call me to see what they say.
I took him to the doctor last week he had and ear infection and his teeth are looking really bad. So he goes to the dentist next week. The doctor thinks they are decayed i hope not. I no the two in the front are just about gone. So my little guy isn't going to have no teeth.
His breathing is still the same. Sometimes when he talks nothing is coming out. So that is a little scary. So i just hope he don't need no trache. I just don't wont that for him.
He is doing good with his weight. He is up to 27 pounds, I just don't no how he don't eat nothing. I guess the milk is doing it.
I just wish it would cool down some so we can go outside and have so much fun. I try to put him in the pool he don't like it no more. I don't no why. He don't like a bath no more either.

Hannah goes in next Friday for an Upper Endoscopy. So I hope everything goes good for that. I hope they can find out why she is having so many stomach pains.

Monday, July 12, 2010

Evan and Gabe playing ball.

Evan playing with his truck.
We aren't having a good week and it's only Monday. Evan got up around 7:00 and he was cry screaming, he couldn't pee. So i had to get the stuff together and open his hole up. He just had surgery July 1 they open him up. They have to do something else he cant keep on like this. Anyway i got him back to sleep and he is sleep so good.
Evan isn't eating again he didn't eat nothing yesterday and the day before.
His skin is looking bad and is getting more blister on him. So i don't no whats going on with I'm. His toes are giving him a hard time to. I don't what to do with his toes. He don't like the shoes on and when he has to wear them they are hurting his toes and causing more problems.
We got his blood work back he is still anemic, his VITM. D is low again.

We had a good weekend I took Evan to the lake Saturday morning to get him out of the house. He had so much fun, we just walked around. We meet some friends up there and just had a good time. Then Sunday Evan stayed with my mom she keep him so me and the girls could do some stuff. So we went to my cousin and we went to the lake and the girls had so much fun. So did I. I was so glade to get out of the house and see other people and have a good time with my girls. The only time i get out is to go to the doctors or to the store. What fun is that.

Monday, July 5, 2010

Kids watching the fireworks.
We had a good July 4th. It was Chyanne birthday she turn 9. I just cant believe it. She was in the parade and she did a good job it was so hot.

Evan love the fireworks he was laughing and clapping, i just love to see him like that. Evan is doing okay he is eating okay. His breathing is the same. He is peeing good. He don't have no pain with his little boy part. I hope it stay like this but i know it wont.

It's going to be hot this week so we will be inside all week. That sucks. I hate staying inside and so does he.

Friday, July 2, 2010

Evan did good with his surgery. They took so good care of Evan in the OR. They did everything I told them to do.
The ENT Dr. didn't put no trach in. YEAH. Evan airway is okay but not normal, his vocal cords are swollen and very thicken. He said that is causing his breathing problems. We have to go back in 2 months for a check up and if his vocal cords are still swollen like they are now he said that he will put a trach in him. I still worried about his breathing but they told me to keep on doing what I'm doing. They said if he stops playing and stop doing everything because he cant breath for me to bring in back up there and then they would but a trach in. I'm glade he didnt get one but i don't no if they did the right thing or not. I hope they did, I hope he will be okay. I hope he never needs a trach.
Then Dr. open his penises up again. So i hope it helps for while.
They took his blood still waiting for that to come back.

They said we would be there for 5 days, and we came home the same day. I was so happy. So was my girls.