Sunday, February 28, 2010

Thursday, February 25, 2010

Evan and Hannah playing he loves to play with his sisters

Evan is doing better now he is back to his self now. I'm so glade. He is still having problems with his penis. SO i don't no what we are going to do about it. We go see the Urology tomorrow so i hope he can do something with him. His toes are looking a little better.
We went outside Sunday it was so nice out side, Evan had so much fun out there.
Evan will be 18 months on March 11 i just cant believe it. He just amazes me. I never thought we would be hear now. When he was born his skin looked so bad, now his skin looks so much better. He still has a lot of sores on him. But i don't have to wrap his arms or legs now. Some time I will have to wrap his legs. I have to keep his feet wrap all the time. Now if i could get his noise to heal we would be okay. But his noise will never heal i don't think.

Sunday, February 21, 2010

Evan and his new hair cute

Evan got his hair cute. He is so cute.
Evan is feeling little better no more fever so that's good. He still has smell to him. So we going back to the doctor Monday to see what doctor says. He is still having hard time peeing. I have been talking to Sara and she been so nice talking to me about Evan. Evan has scared me this week. Sara i wont say think you so much.

Friday, February 19, 2010

Evan is still having a bad week. He has a bad smell to him i no its his wounds that is doing it. He is still on Cephalexin. He is having a hard time peeing again. I just don't no what we are going to do about it. He is in so much pain this week that it makes me so mad.
Went to the dentist yesterday, and they said that he need some more of his teeth taking out because they are bad.. So i don't no when we are going to get that done. I no soon. Because he is in pain with his teeth. I was going to get Cincinnati to do it again but that's not going to happen. His insurance wont pay for it. So i guess his dentist hear will do it. I hope they will do it. I have to go and talk to them about the surgery and Evan's condition about EB.
Evan's toes are so bad they wont heal and they hurting him so bad. I just don't no what to do for him. He wont wear his shoes now.
Evan is not eating again. I no he isn't eating because his mouth hurts so bad. I hate this EB. His noise is looking really bad, and it wont stop bleeding. But they say with JEB that's what happens with there noise. I don't like it at all. He is having hard time breathing out of his noise.
I really upset. My son try so hard to do stuff and he gets hurts so easy that i just hate it. He plays and his skin tears or he bleeds everywhere. It's just not right that these kids have to be in all this pain all the time.

Tuesday, February 9, 2010

I took Evan to the doctor yesterday and he put him on Cephalexin. Some of his sores are looking bad. So this medicine will help him. His diaper area his still looking bad. He isn't sleeping at night because he is in so much pain. His eye is looking bad. He keeps getting blister on his eye lid. I don't know what you do for that. He has never had one on his eye lid.
But other then that he is doing okay. He is being a boy.

Evan playing with his sister.

Friday, February 5, 2010

I guess i have talk to much about Evan how he looked. I wont do that no more. He is getting blister everywhere. He is looking so bad. Some of his his sores are not looking good. He had blister on his leg yesterday, and it was big as a golf ball. My poor little man is now hurting. Now his buttock is getting blister on it. He diaper area was looking so good. He is missing so much skin on his buttock, that is just kills me. I don't no how he can deal with it. I hate to see him in all this pain. He has blister on his eyelid and i don't know what to do about it. He never had one on his eye lid. It's not looking good either it has some yellow in it. So i guess it gets worse i will have to take him the doctor. I hate EB.
We went to the Urology yesterday, and they said for me to keep open his hole everyday. The tissue grow over it in just a day. They gave me something else to use and it's so much easier, and it don't hurt him that bad.

Monday, February 1, 2010

Evan is doing good. He is still having problems with his penis. We goes back to the urology Thursday. I'm having a hard time opening it, and if i don't open it he can't pee. So i wish his penis would just heal.
His toes are really bad now, they are hurting him bad. His fingers are looking good.
He is eating good now. All weekend long he eat an eat. Mommy was so happy. He is not wanting to drink milk now for some reason. He needs his milk. So i don't no what up with that. He isn't drink a lot like he has, but i guess because he is eating now. Who knows.
Him and his shoes he loves them, he wont's them on all the time. When he wears them he thinks he can jump. So now his new thing is to jump over everything, and he having a hard time doing that. But he is trying.He is hurting his self, but he don't care he keeps on doing it. I'm so afraid he is going to hurt his skin or make blister. he gets mad at me when i tell him no.. You don't wont to make him mad. When he gets mad he gets mad. He will hit his head on the floor or on the wall. I guess he gets that from his daddy. I no his daddy gets mad easy. So they say son like father. So i guess we will see.
I took him out in the snow this weekend and he didn't like it at all. I put him in the snow and he cry he didn't like it at all. I wish i would have took some picture. But i forgot my camera.

Evan was posing for the camera. He loves
that hat.

He was being so good playing with his toys.

Evan taking bath he loves a bath.

I love this picture his skin looks so good, i had to take
a picture. I wish his skin would stay like this.