Monday, January 25, 2010

Evan like the fireplace.
I don't have time on the computer to write nothing. Every time i get on something happens. Evan is doing okay. He is going back to the eye doctor tomorrow to get his eye check. I hope everything is okay, i hope he don't lose no vision. Evan isn't eating again, I'm worried about him but everyone says i just worrying to much. But that's what mommies do. Evan got his iron checked today and it was low still. So i don't know why that is. That really worries me. I no EB kids have low iron. He is on iron med everyday. He is walking still but i have notice that he is having some problems. His legs get stiff, and he haves a hard time walking. I don't know why that is. I still have to open his penis everyday, and let me tell you i hate that. He don't like it either. But i guess he has to pee. He is getting some new teeth in and they are all coming in bad. So we go to the dentist Thursday.

Thursday, January 21, 2010

I had to take Evan to the eye doctor today.. He has corneal abrasion. His eye looks so bad, all he is doing is sleeping and crying. I really don't know what to do for him. I hate to see my son in all this pain. I hate EB. Evan isn't eating this week either. That's not good, he needs to eat.

Monday, January 18, 2010

Evan got up this morning a he couldn't open his eye. I have been putting eye drops in his eyes so i hope that will help. So all i can do is hold him. I hate this for him. But he is sleeping alot so that is good for him.
I took him to the doctor and he gain another pound yes he is up to 24 pounds. I knew he could do it.

Mommy got me some shoes and i like them. The shoes isn't putting no blisters on my feet. I'm walking and getting into everything now. I don't think mommy likes it but she don't say nothing. Mommy says that my skin is looking so good. The only thing is wrap is my feet. And i love it. Mommy wont my noise to heal but it wont, so maybe one day it will.

Evan likes the vacuum. He was trying to help mommy clean.

I love the smile.

Saturday, January 9, 2010

My son makes me so happy, will all my kids make me so happy. Evan was in the floor watching the girls play on the floor. So i turn my head and Evan was right there with them. I was so scared that he was going to hurt his self. But you know what he didn't care if hurt him at all he had so much fun he was laughing. And it was so nice to see my kids having so much fun i love it. But you know Evan was on the floor playing he had blood on him i didn't no where it was coming from, but Evan didn't care. He just kept on playing. I looked at him and he done hit his ear, the skin just came right off. When i seen that i could have cry, my son having fun with his sisters and his skin comes off. That suck. So any way i got him to clean him up and to fix his ear. He was so mad at me he wont's to play with his sisters. I hate EB, we have to fine a cure.

Evan is walking now he is trying to run. He will run after his sister. I love it. I didn't think this day would have came and i love every min of it. I wish i could fine him some shoes i got him a pair and he don't like them.

Evan went to the doctor for his 15 months check up. Everything went go. Except for his shots.
He weighs 23 pounds he is 32 inches tall his head was 19. He gained a pound YES.

Evan is eating good now they but him on some new med so i guess that is helping. I'm so glade he is eating. His blood work came back and his iron is up where it should be and they other stuff in his blood work is all looking better. So I'm so glade. We like to hear good news.

So the prayers do help so everyone keep on praying for a cure.

Wednesday, January 6, 2010

Evan sleep all night last night yes i love it. This is the third night he has slept all night. Mommy is so happy i need my sleep.
Evan got up this morning and he could not pee, so i got his stuff and open his hole and then he pee in my face. Evan looked at me when he did and i know he was saying that's what you get mommy. Now he is peeing but it's still hurting him.
Evan is walking now. He is still having some problems but he goes. His right leg still not right there is something wrong with it. But he might be walking like that because of his toes.
We went to the Pulmonary doctor yesterday. He put Evan on Singuliar. He said that might help him with some of his breathing. The doctor is worried about his noise, he said that could be cause alot of his breathing to because he is breathing out of his mouth so much. So i guess we will have to take it day by day.

Tuesday, January 5, 2010

Teresa this is for you.
He is Hokie man now

Granddaddy got this for me and i love.
Thanks granddaddy

Monday, January 4, 2010

I took Evan to the Urology this morning and his hole was close. So the Urology had to open it up. They told me to keep cream on it, that's what i have been doing. So we will see what happens now. I hope the cream works. Poor little man hasn't pee this morning i wish he would pee. So everyone say a prayer for him.

Sunday, January 3, 2010

Evan loves the cat he had so much fun with it.

Evan walking with his water.
I took Evan's Catheter out like the doctor said. So yesterday Evan was not his self he was crying lot, so i new there was something wrong with him. So this morning we got up and Evan couldn't pee. Well Evan is peeing but it's hurting him, and it's a slow stream. You can see his hole is just covered over with new skin. So i called UVA and they said for me to keep the cream on his penis. But you what that's not working i have been doing that. SO tomorrow i will call the doctor that did his surgery and see what he says. I just don't know what they are going to do with him. I'm really getting upset with this. I hate to see my son in all this pain. I hate EB. All of the wonderful kids out there with EB suffer everyday and there's nothing we can do for them. So we need a cure.

Friday, January 1, 2010

Its 2010 now and so far it's not been a good year. I had to call the Columbia Gas because i had a gas leak. So they had to fix it that cost and arm and leg. But it's fixed that's all that matters.
I took Evans catheter out to day like the doctor told me to. Now to night he is having some problems. He is having a hard time going. I went to put his med. on his penis and his hole is closing but i hope this med will open it back. I will be calling the doctors Monday morning. I don't know what we are going to do. This is pissing me off. My son just can win for nothing. I hate this dam disease. I wish we could fine a cure. So we need to pray that his hole will stay open.