We are home now so glade. Evan is doing so much better now. He don't like the bag on his side. But he has to have it so see if this will keep his penis open. His breathing is good and he looks good he is Evan now. I'm so happy. He got up this morning and eat. I love it. All i can say is GOD IS GOOD.I have to keep him up in his high chair or hold him to day because he wont's to pull the tube out.
Thanks for the prayers.

UVA Surgery Update

Mandy again--posting for Christina. She just called and Evan is out of surgery. They had a hard time waking him up, and his oxygen and heartrate were both low. He's awake now though, had something to drink and is resting in a room. They decided to keep him overnight for observations since he had a hard time waking up. The scope on his penis showed it was clear inside, so the dr's think its mainly the tip that keeps growing closed. They put in a catheter and want him to keep it in a few days, while giving Christina cream to put around it in hopes it keeps the skin from closing up onto the catheter tube. Lot's of prayers are needed for this little guy and his mom too, they definately can use all of them!!

Evan walking
I love it

Evan is having surgery tomorrow. I hope this helps him.

EVAN IS WALKING

Evan is doing good walking I'm so glade. He is having surgery on Wednesday. They are going to open his hole on his penis. So he can pee, better. I hope it works. He needs it he has been having problems for so long. Evan is still not eat like he should. I wish his blood work would come back soon. Maybe it will tell us something. The GI doctor that he see is good. He said he will help him.

We had a good Christmas Evan was in a good mood he was feeling good. My kids got so much stuff this. Thanks for everyone helping me. Evan is getting better, he still has a cough. He isn't eating that good at all.
He did take off walking to day. I about to fall in the floor.

Christmas of 2009

We went to see the Pediatric Urology at UVA Tuesday. He was so nice he said that is going to do what he can do to help Evan pee with out pain. He is going to talk to the doctors in Cincinnati about what he wont's to do for him. Evan is suppose to have surgery in January on his penis, I'm so glade. But it is so scary to put him to sleep, but we have to do it. Evan still is having problems going to the bathroom. I called UVA to day about Evan. Evan hole closed up again and the Urology hear had to open it up again. He just did this two weeks ago today. When they do the surgery i hope it helps.
Evan still not eating like he should but what you do. He goes to the GI doctor Monday. Evan hasn't lost know weight.
I have some good picture of Evan i just cant get them on the computer. I don't know what wrong with the computer. Its probley just me.

Hello everyone we are ready for Christmas. We got our Christmas pictures taking yesterday, they will be in next week so i will put them on here. I hope my computer let's me, and i have a lot of picture to show everyone. Evan likes the tree he like to hit it so i had to put all the ornament's up high so he cant get them. We went and seen Santa today he didn't like Santa at all. We did get a picture but Evan was screaming.

Evan is still having a hard time peeing. We go back to the Urology Tuesday. I don't know what they going to do. But someone is going to do something I'm getting really upset because he is in some pain, and know one is doing nothing for him. I'm calling Cincinnati tomorrow and see what they say. He is in a lot of pain he is getting new blister and they wont heal at all, he don't wont to eat, he wont take his milk so I'm getting really scared now. So mommy going to get someone to do something for my son this week. If he don't eat he don't get his calories that he needs. So we are suppose to see the GI doctor Tuesday and we had to change it because he has to see the Urology Tuesday, so next Monday he see the GI doctor. So maybe they can do something for him. We got his labs back this week and his iron is still low i don't know why he take two kinds of Iron, and his Vitamin D is low. Now he take a Vitamin D supplements. All i do is give him medicate no wonder he wont eat.
He hasn't walk know more this week i guess he has been in to much pain with his penis. His legs haven't been that strong this week. But that's okay he don't need to walk because Mommy like to hold him.
I will try to get some picture of him if i cant get my computer to work.

I had to take Evan back to the Urology again today. He is still having problems going to the bathroom they said it is burring him to go. I told them that we need to do something for him to keep some of the pain down. So the Urology but the tube in his penis. I don't know if we should have done it or not, but we had to do something he has to keep the bladder empty. so when we got home i was changing his outfit and diaper he pulled the tube out. I was freaking out, didn't know what to do. SO i called the doctor and he told me to keep it out and see what he does in couple hours. SO i did he did go to the bathroom but he cryed so bad i know it hurt him, they said it would. So we didn't but the tube back in, he is still crying when he goes. Now i just don't know what to do for him. Now he is getting a fever and i don't know why that is either. So i will be call his doctor tomorrow to fine out why he has a fever. If its not one thing it's hundred. I just wish he would get better. It suck to see your child in pain all the time. He is getting alot of new blister on him now to. He still not eating he hasn't had nothing to eat in two day, he is drinking his milk.

Today i had to take Evan to the Urology he could not go to the bathroom. So he had to open his penis, if it happens again i have to do it everyday so it will stay open. I hate to do that but i guess i have to. He has to empty is bladder, or that will cause problems. So today he isn't feel the best.
He has not eating to day he hasn't had nothing to eat today he just wont eat. He is drink some milk so that's good.
Evan is having alot of sores on him now, he has one that just wont heal. I would think it's getting cold outside he wouldn't have so many sores on him. His toes are really bad again i cant get them to heal at all. I wish i could find some way to keep them heal. Every time he hits them they bleed. He just don't feel good today, he is laying around to day doing nothing. So we need to say a prayer for him to night.
When you see your son in pain what do you do, Evan is looking at me and he just cry and you cant do nothing for him. He is in so much pain. He is having a hard time going to the bathroom.
It is bad when he plays and his skin tears or when he is playing he hurts his self, and bleeds. It just so sad to see your son like this.

My mommy has a birthday tomorrow

Evan took his first step. I'm so happy.

Evan is doing good. He is having trouble again going to the bathroom his penis is closing again, so he is feeling bad. So I'm going to take him to the doctor tomorrow. He is eating okay. I think his stomach is hurting him, he has gas so bad.
Evan makes me so happy, I just didn't think he would do what he does now. This illness that he has isn't stopping him from nothing. He is a fighter.
I wont to put some pictures of him trying to walk but my computer wont let me.
We are going to see Santa Clause this weekend i hope he will set on his lap, but i know he wont.

We had a good Thanksgiving it was so good to see the family. Evan had a good time to. Everyone was so glade to see us. We still didn't go see everyone, but we will see them at Christmas time. We where so busy.
He didn't eat nothing, he hasn't been eating. I guess when he gets hungry he will eat, i can't make him eat. But i know he needs to eat to make him heal and grow. What you do.
Evan had a bad night last night, i don't know what is wrong with him. He just starts to cry out alot, so he is in pain some where. I think his stomach is hurting him so bad, i cant wait to see the GI doctor, we was suppose to go last week. But Evan had surgery. So we go Dec. 16.
His noise wont stop bleeding either. I wish there was something i can do for his noise. When it bleeds it bleeds. I'm afraid he is going to get choked from all the blood. So we have blood everywhere,But that's okay. I will be wash blankets today. I just wish he would feel better.
Evan is trying to walk by his self he let go yesterday. But he got scared and fell down. I just can't believe it. I love it. I didn't think he would walk. He got some shoes and he still don't like them at all.
SO when you read this today. Say a prayer for my little guy today. So he will feel better.

Evan is doing good, better then last week. His mouth is looking good, know blister's. He is eating more YEA. I just don't know what to give him because he don't have no teeth now. He is a picking eater.
This morning he got up and said MOMMY and came to me and gave me a big huge, that just made my day. I just love it when he says mommy.
We are going to be traveling tomorrow to go to Granny's to eat, and see family. They just can't wait to see us. We don't go out much to see our family, its just to hard to get everything ready. But I'm glade we are going get out of the house for awhile. And eat some good food.
Evan is still trying to walk. His shoes came yesterday and he don't like them at all. I hope he gets use to them soon. He will walk in them and he does a good job.
Me and Evan went to Wal-mart yesterday so i can start Christmas shopping. So i went to the toys and Evan had so much fun, he was pointing to this toy and that toy. He loves trucks. So i did get some shopping done for my girls and got Evan a truck. When we left the toys he wasn't happy no more, so we had to go home.

Everyone have a good Thanksgiving

Today we had a birthday party for Hannah she turn 4 today. I just can't believe it. My little girl is getting so big.

I took Evan to the doctor yesterday because of his fever. His doctor had to do a culture on his finger it looks really bad. So he said that's why he is having fever. So now i he have to wait for the culture to come back. He still not eating like he should, but he hasn't lost no weight so that's good. I hope he start to eat. It most be EB because i read about other EB baby and they are having the same problems.
Jonah isn't eating that good so we need to pray for him to eat. Jonah has JEB.
Evan noise is still really bad, i call the doctor about it. We go see the ENT doc soon.
I just wont to think everyone for everything. Just keep on praying for Evan, and Jonah he needs it to.

We are home now. Evan is doing okay now. They had to take 8 of his teeth 4 on the top and 4 on the bottom, and they cap two of his teeth. When they was working on his teeth a blister came up on the ruth of his month the doctor pop it, he didn't get know more blister in his month. He did get some blister on his body, but they aren't that bad. He has a fever now so i don't know why that is. So he needs a prayer that it goes away. So thank everyone for praying for him.
I hope he does okay this week with his month and don't get know blister in there.

update #2

Mandy again... Christina just called and Evan made it through surgery good, and is now in his room sleeping. She said the surgery went well, they took out 8 teeth, and capped his back two teeth. They also found a blister while they were working and were able to lance it, and hopefully it will heal fast. He pulled out his IV after he woke up, but they decided not to put one back in as long as he drank a little. She said he drank a cup of Gatorade, so hopefully he can keep that up. He'll stay in the hospital tonight, and if he drinks ok they will release him to come home. Your prayers helped a ton, but definately don't stop now! He will have a long road to recovery and will need your prayers!

Surgery Update

This is Mandy posting for Christina.
She just called me and said he was in surgery, and they told her it could take up to 3 hours for the surgery. They put him under before giving him his IV, and intubating him, so hopefully he is resting peacefully during the whole thing. The dentist saw on the Xray where his two eye teeth are in the same shape as his other teeth, but they aren't in far enough for them to remove them today. The plan is to cap his back teeth in hopes that will save them. I'll post more updates as Christina lets me know, but please please keep everyone in your prayers!

I'm getting stuff ready we are leaving Sunday morning to go to Cincinnati. Evan is having SURGERY Monday morning. So when you read this please say a prayer for him. He is getting his teeth worked on so i hope he does okay with it. All of his teeth are so bad, they are starting to hurt him, all he wont's to do is hold his mouth. So i hope this will fix one of his problem. I'm hoping after this he might eat better, that's what we are thinking.

Evan is doing good this week. He really wont's to walk he let go yesterday and then he went down. He is doing so good. Evan eating isn't good he just don't wont to eat. Yesterday he did eat a good dinner, i was so happy. His noise is still bad i wish there was something they could do for that.
I will let you Know how everything goes. Just remember to say a prayer for my son.

I'm taking Evan to the doctors to day. I was looking in his mouth last night and it didn't look right. so I'm getting the doctor to look at him. I hope it's nothing. His breathing is still the same. So we will get that check to. This EB stuff is driving me crazy. I hate EB.
When he is drink his milk now he gets choked alot, i don't know why that is. We go see the GI doctor on the 17 so I'm happy about that.
Evan sleep all night last night i was so glade. So i got some sleep last night. I feel like a new women to day.

We need to pray for my little friend Landon he has the flue bug. When he comes to my house he likes to get in my walker, its so funny. Landon please get better soon.
Love Evan.

Evan is doing some better now, his breathing isn't as bad. He isn't eating like he should i wish he would eat. I don't wont him to loss any weight. We go see the GI doc Nov.17 . So hopeful he can give me some tips so he will eat.

We are going to go see some family today in Staunton. So we can get out of the house today, I'm so glade. It's going to be nice today. Evan should have a good time. I know mommy will.

Evan got his hair cute. He didn't like it.

He looks so cute with his hair cute.

Evan's breathing isn't been that good this week. He is breathing is really hard and i don't like it. I took him to the doctor the other day and he told me to do some breathing treatments on him. so I'm doing that, and let me tell you Evan don't like them at all.

Evan still don't wont to eat that good. But he loves to drink his milk. So i guess that is good for him so he is getting something in him.

He is getting so big now. He fights me now to take a nap but he has to have nap. Bath time now is getting really bad. He hates a bath. He use to love a bath. So now i hate bath time he fights me and he cry and i hate that. I wish i had some one to help with bath time but i don't. But that's okay i get it done. He likes to get in his basket and take everything out and then he puts everything back in, so that keeps him busy for awhile.

Evan is a mommy's boy so bad. He don't wont to stay with no one just mommy. But you know what i love it, i enjoy every min with him. His sister get really upset with him bc he is such a mommy's boy. But we all have fun together. some days are not that good but mommy's deals with it. Evan don't like mommy to play with his sister, and the girls don't like me playing with there brother. So we all try to do something to gather.

Happy Halloween

Evan and Hannah

Evan is trying to walk now he is doing so good.

Evan is doing okay he still have problems going to the bathroom, I had to take him the urology Monday the doc had to move the skin away so he could go to the bathroom. I wish they would do something for him.

He is trying to walk I can't believe it. He said mommy for the first time I'm so happy. He says mommy, Daddy , bye bye, hot i cant believe it that he is saying so much now.

We are having a Longaberger Bingo for my son Evan.

Sunday November 1,09

Covington Moose Lodge 2:00

Door opens at 1:00

20 games with lots of door prizes food available

This fundraiser is being done to help defray medical cost relating his disease

The trees was so pretty on the way to Cincinnatia.. I love fall

On the way to Cincinnati

I had to take Evan to Cincinnati this week. Will we got good news and bad news. The good new is that is airway is clear. His noise is worrying us the Doctor gave me some steroid cream to put on it and hope is helps he said that his noise can close up, i don't wont that. He did have some blister in his month and his throat. We seen the eye doctor there to and Evan has some scaring in his eyes so now i have to put eye drops in his eyes every night now to help his eyes. We also seen the dentist and they said his teeth are decayed, they are going to talk to the EB doctors and see what they think, but he said when we come back to Cincinnati in 4 months he will have surgery done on his teeth. We saw the EB team and they looked at Evan. The doctor there looked at his penis they gave me some steroid cream to put on it to see if that will keep it open he hope it does. We have to keep and watch on his weight he isn't gaining any weight we don't wont him to lose any of his weight. I talk to them about Evan walking it will be a while before he walk they said he isn't ready to walk yet. His legs aren't that strong yet but they said they will get strong.

Evan is getting sick. His noise is running and he has a bad cough. He was up all night last night. I'm going to call the doctor tomorrow i hope they are open. His penis is not looking bad so i guess i will be call the doctor about that to. He isn't going to the bathroom right. I wish November would get hear so we can get to Cincinnati so the doctors up there can see him. His doctor is good, but the doctor in Cincinnati no more about EB. So Evan needs everyone to pray for him so he will get better.

The kids loved ride this is was there favorite thing

That is Hannah, Chyanne, lucas

Oh mommy

Evan on the wagon ride he loved.

That's my mommy

That i love so much

Thats my sister's Hannah an Chy

Evan at the pumpkin patch
He loved it he was the best lil thing

Evan is doing okay. I had to take him back to the doctor yesterday one of is wounds was looking bad. So they did a culture on it. So now we are waiting to see what it says. Today he don't feel good, he has been sleeping a lot and just laying around a lot. So i hope its nothing.
He don't take a bottle no more i didn't take it away he did it his self. He likes his cup, and doing good with it.
Evan is try to walk but his legs get tired. He walk around the chairs he dose good. When its bath time now he knows and he don't like it now. When give him a bath he cry when he gets out of the bath and its time to wrap him he gets really mad. It takes to people now to wrap him. I cant do by myself no more.

Mommy was wrapping me and i went to sleep.

Evan is feeling some better, his penis is looking okay. I'm going to call the doctor b/c i wont to make sure that it's okay. He goes back to the doctor Friday for a checkup. His breathing has been bad, he has been breathing really hard so i don't know why that is. So I'm going to call and see what they wont me to do for that. I hope that goes away. I don't wont that to start back up.

Evan needs everyone to pray for him, he is a lot of pain. He was having a lot of trouble going to the bathroom again. His penis was closing again. Last night he was cry an shaking because he was in so much pain, I was crying with him. There was nothing I could do, i try to hold him but that didn't work. When he is in pain an there isn't nothing you can do it was killing me.
I had to take him to the urology again and he said we have to do something. I said yes we do,We where just there a month ago. So he said that he wont's to do the procedure. So we did the surgical procedure i hope it works. I hope he don't get any new blisters on him. He is in some pain but I'm giving him med. I hope I did the right thing for him.

Evan loves his balloons

He didnt like everyone sing to himHe loved his cake

HAPPY FIRST BIRTHDAY

EVAN

MOMMY LOVES

YOU

SO MUCH

I did think he would be hear for his first birthday put he is hear. I pray everyday that he will be okay, and they will fine a cure for his EB. We are going to have a big party for him.

Evan loved the grass he wonts to play with his sisters, he was all over the yard going after his sisters.

We are at grannys for a cook out
This is Chyanne, thats my big sister she is in the Highlighters This is my little sister Hannah we are watching Chyanne

Evan is doing okay he has a nasty cough but i hope that goes away. We had a good weekend he was in a good mood all weekend long. The weather has been nice it hasn't been that hot. We went to the parade Monday Evan loved it. He was so happy and smiling i loved it, I love to see him like that. We had a lot of people looking at him, but we just kept on going and having fun. Evan is eating good he don't like baby food now so he eats what mommy eats now, but that is okay. I'm glad that he is eating. He will be year old Friday I can't believe that. Where did this year go. I didn't think he would make it this far but he is a fighter and he is still hear with me. He is going to fight this disease and we are going to find a cure. So he can be a boy an play football and run outside with out any thing on.

I had to go back to the doctor again to day. Hannah has been sick she has a cold and an ear infection, Evan has a cold to. SO I hope they get better soon. Evan is doing okay his skin is looking good. He is trying to walk it is so funny. He is into everything. I took him outside today and put him in the grass he loved it. He got mad when i picked him up to take him inside. I hope it stays cool now so i can take him outside he enjoys it.
We are going to have a cookout this weekend so I hope it don't get to hot so Evan can be with all his family and enjoy his self outside again.

I took Evan to the doctor, he has infection. They but him on Cephalexin again he was just on that 2months ago. SO I don't no why he keeps on getting a infection I do everything I'm suppose to. Now he wont eat nothing he will take his bottle, but I can't get him to eat no food. Yesterday he had only 3 bottle all day. I'm having hard time keeping him wrap he gets mad and try to take everything off. So I hate to put paints on him because its to hot.
We had a bake sale this weekend and it turned out good. I just wont to think everyone for everything they did to help.

Evan had a bad night last night he was up almost all night, he had a fever101.5, and he still has his diarrhea. So I'm going to take him back to the doctor Monday. He seems to be okay for awhile then he just starts to cry, like something is hurting him. He don't wont to drink his milk. He is having a lot of gas to. His skin was looking so good now he is getting new blister every where. The top of his head has some blisters, his buttock is very bad.
Evan PT came over Friday to check him out and see what all new things he was doing. She couldn't believe everything he has been doing. We never thought he would be doing what he is doing now. I'm so glad. I told her the next time she came out he will be walking she said probably, I hope. I can't wait to see him walk. When Evan was 7 months old all he was doing was trying to set up but he had a hard time. Now he is 11months he is doing everything he wont's to walk but he has a hard time. His right leg is still weak, but he will get it.
So lets pray that he will sleep to night and that he will feel better.

I got my computer fix.

Evan is doing okay he is going to the bathroom okay. I hope the cream keeps his penis open. Now he has diarrhea bad so now we are going to do a culture and see whats going on. He don't have fever he seems to be okay just has diarrhea bad. I hope is nothing. He isn't eating good this weeks he don't wont his bottle. He is eating some food, so that's good. He is pulling his self up he wont's to walk so bad.

My computer is still down, I'm at a friends house on there computer. We did not do the procedure on Evan i talk to the doctor's in Cincinnati they said for me not to do it. So we aren't doing it right now. They gave us some cream to put on his penis, so I hope this works. Evan is doing okay now so lets pray that he will be okay.

Extra Prayers

Hey everybody, this is Mandy, Christina's friend, posting for her because her computer is down. Evan had to be sent to Dr. Moshy, the urologist today because the skin keeps growing over the end of his penis and making it hard for him to use the bathroom, and can lead to a UTI which Evan definately doesn't need to deal with on top of everything else! Dr. Moshy has trimmed the skin back before, but he said that its just not something he wants to do every week for him. There is a surgical procedure that Dr Moshy wants to do where he trims the skin around the opening so it won't keep growing over. Christina has to make the decision on whether or not to put him to sleep and have it done, or have him awake, but held down, while he numbs the penis and does the procedure. Both options have many risks with a child like Evan, since he has respiratory issues and its hard for him to breathe, so putting him to sleep is a scary thought. The holding him down part is scary because any kind of friction on his skin can cause blisters, and it would be traumatic for him. Please pray for Christina as well as Evan as she makes this decision for him and that Dr. Moshy is able to do the procedure with the least hurt to Evan.

Mommy i'm standing up now.

I'm going to walk soon