CHRISTMAS MORNING

CHRISTMAS EVE

I hope everyone had a good Christmas. I no we did. Evan was feeling good. He got up Christmas morning around 6:00, and he went into the living room and seen all the present. He said i wont to open. I told him he had to wait for Chy and Hannah to get up. He went to the steps and yelled at the girls to get up. It was so funny. So they got up and, and they ran into the living room to start opening presents. This was the best Christmas ever. The kids got so much stuff they didn't no what to play with first. I wont to tell everyone thanks so much for everything they did for me and my kids for Christmas.

The next day Evan wasn't feeling good he had bad cough and he just looked bad. So i new he was getting sick. So that was so upsetting. He cant go a week now or he is sick. it sucks. So i took him to the doctor and he had bad cold. Then his eyes starting to act up. So now he has corneal abrasion. I hate them things they aren't no fun.

MERRY CHRISTMAS

We are so ready for Christmas this year is going to be so much fun with my kids, Evan is going to love Christmas this year. I hope everyone has a good Christmas.

Evan is doing good, he is eat like he has never ate before I love it. He is still having problems with his peeing. They thinks its bladder spasms.

It has been crazy hear Evan has been sick and everything has happen. On December 8 I had to take Evan to UVA hospital, he couldn't pee. Evan has catheter and he still couldn't pee so i new there was something wrong. It was the catheter had skin in there blocking him to pee. So the next day Evan had surgery to fix the problem, Well thing didn't go the way they was suppose to they had to put a new one in. So they had to cute him again and to it all over again. I felt so bad for Evan. After surgery he wasn't acting right at all he got sick had small fever. So the next day he was okay but not Evan. We got to come home. That night Evan got sick he couldn't stop vomiting. So Saturday he was still sick and he was vomiting and had a fever. Saturday night he was felling better i thought. Saturday after he went to bed he got up he had fever and he started to vomit again. So Sunday i called my mom and told her i was taking him to the ER. I had to get my girls ready for church and then me and Evan went to the ER. They took him to another hospital in Roanoke. We got to Roanoke, they had to check his weight and he had lost 2 pounds, i thought i was going to die. I told them that he had lost some weight. So they check his stools and his blood work. His blood work came back and his blood wasn't good at all. So they called Cincinnati and talk to one of Evans doctor. So they could get better understand with his EB. So they started and IV, and he need to get some nutrition to. They gave him some nutrition. They rest of his test finally came back and Evan had the Rota virus. I said what is that so they told me. So we stay at the hospital for a couple of days. Evan start to feel better he stop the vomiting and no more fever. so on December 14 we got to go home and Evan is doing okay. Evan still not eat, we are trying to keep fluids in him. So tomorrow he has to see his doctor to make sure he don't lose no more weight. So we still need prayer for him.

Evan had surgery Thursday he did good. I just didn't like what they told me. The inside of his penis was so raw he had skin hang in there. That's why he couldn't pee. So they had to put a Suprapubic Catheter in. So now he has to get use to the bag on his side. Evan is still in some pain where they cute him. Yesterday he couldn't walk or stand. He just cry and cry and you can tell he was in some pain. I told him he needs to go to sleep that he will feel better so i got him to sleep and slept for 4hours. When he got up he was still in pain so i gave him some more pain medicine. That helps some.
Today he is doing better, he is walking and playing. I took him to the doctor to make sure everything was okay. The check his urine to make sure he didn't have no infection. Everything looked good. So i was so glade.
So now everything is going to change i have to watch to make sure he don't pull on the bag. I have to keep the bag on the outside of his paints so it wont tear up his leg. His legs look so good i don't wont to tear them up. His skin looks so good. He still not eating. He just don't care for food now.
We are going back to Cincinnati in Januray to check his airway again and see what they are going to do with the Catheter. So we need prayer for him.

We are going back to Cincinnati today. Evan is having surgery again on Thursday, they going to see whats going on with his penis. I hope they fix it this time and he has no more problems. They going to keep him over night to keep an eye on him. So we need prayers for him. Thanks.

We are having okay week so far. Yesterday me and Evan went to my moms and helped her put up her lights outside. Evan had so much fun. He said i help mommy i help granny i help paw paw. He was so fun and he had so much fun. Then i came home and we did mine. Evan and the girls decorate the tree, it looks so good. Evan loves the tree and the train under it. He lays there and he will watch the train.
Evan is still having a hard time pee. I called the doctor yesterday he said he will talk to some other doctor and call me back. They think he has blockage some where up in there. So why aren't they doing anything is my answer. So I'm going to call them back today hear in a few. My son can keep on like this. So the peeing think is driving me crazy, because i have to watch my son in pain and i hate it.

I hope everyone had a good Thanksgiving. We had a busy day. We went to my family's an had a good time. Evan was in good mood. I'm so thank full for my kids and family.

Evan is doing okay. He is having hard time peeing still. I have call and talked to Cincinnati they think it still burning him when he pees. He is holding his pee and that's no good. So when Monday morning comes around I'm going to call them again and tell them, he is still hurting to pee. I fell so bad for him, just watch him to pee it so sad. He just screams. Everything else is doing good. His breathing is the same, he still breaths hard when he plays. He cant get over heated or he just has a time. He will get choked up.

Sunday I'm going to take my kids to the mall and spend some time with them. They have a small train at the mall I'm going to let them ride. I hope we all feel okay by then. I have a bad cold and so does Hannah.

Wednesday morning came i got Evan up and ready to go to the hospital he new there was something going on. So we got to the hospital he was fine at first then he new where he was. Evan was cry and he started shaking. I felt so bad for him. There was nothing i could do he was crying,kicking, hitting me and everything else. So finally we got him some bubbles and some trucks that worked for awhile, then no more. He said mommy go mommy go. He was ready to get out of there. So it was time to go to the OR, I had to hold him down with his blankets around him and they gave him his gas to go to sleep. It was so sad. I gave him a kiss and told him i loved him see him in bit. He was back there for 2hours. Then i got to talk to all the doctors, the ENT doctor said his airway isn't getting no better his vocal cords are swollen he has a lot of blister in there. He is really worried abut him. So we go back January to check his airway, if his breathing gets worse before then we go back up there then. I don't wont to trach Evan until we have to. The urology told me that his penis looks okay they took the stint out. So we are hopping this will keep it open if not, he said there is some other stuff they can try. Then his dental work they took 4 teeth out and cap 4 of his back teeth. They cap them so he will have them to eat with. He got a couple of blister in his month put they took care of them while he was a sleep.
So i got to go see him in the recovery room he was sleep so good. I was check to him to make sure he didn't get no new blister and he did a big one on his arms. So i got my stuff and fixed it while he was still a sleep. So then they took him to his room to get ready for his iron infusion. But the doctor came in and said we have to wait to do his iron infusion, his blood work came back that his HMG was low so we had to see which one they was going to give him. So he got a blood transfusion done. He did really good with it. We stayed at the hospital over night so they could watch him to make sure he was doing okay. Evan did good.

We are leaving tomorrow to go back to Cincinnati. Evan is having surgery Wed. He is getting the stint taking out of his penis, getting his airway check and dental work done. After surgery he is getting a iron infusion done. So Wed. is going to be a long day. His iron is low again, i guess it will stay like that until he will take his iron medicine. He don't like it and i cant say i don't blame him.
Evan is doing good, he still not eating. So i hope when he gets his teeth fix he might eat.
He is really talking now. I love it. He tells me that he loves me all the time. That keeps a smile on my face all day long.

Evan mommy loves you so much.

Big sister giving Evan his breathing treatment.

I hope everyone had a good Halloween. We did. Evan wouldn't wear his costume but that's okay. I took him out for a little bit he didn't have fun, so we went back to his Granny's and he gave out candy. I didn't get many pictures of him or my girls this year.

Evan is doing better, the peeing thing is alot better. He is having bladder spasms so he is on medication for that. And its working. So we go back to Cincinnati Dec.1 to take the stint out and i hope this will keep his hole open.
He still not eating like he should, but his weight is still good. So that all that matters. He is on the Beneprotein so he is getting his protein.
He is really talking now, he can saw just about anything now. I just love it. He tells me now that its cold outside.
He gets a teacher that comes once a week and he does so good with her. She works with him on his numbers, colors, shapes. I'm so proud of my son. He does so much for all the pain that he is in. I love you so much EVAN.

EB AWARENESS WEEK OCT. 25 - 31.

We need to fine a cure for this terriable illness. So spread the word out. My son and all of the other EB kids an adults suffer so much.

Evan is doing okay. He is still having problems peeing. So i called the doctor today to get some answers, why is he still hurting to pee. He has a stint in. His doctor is out he wont be back until later this week. We think it just sting him when he has to pee and he knows it and he don't wont to pee. All i wont for Evan is for him to be able to pee with out hurting. I just don't know how he does it. His skin is looking really good. I'm so happy for that. His breathing is still the same he has good days and bad days with his breathing. His teeth are still hurting him. When we go back to Cincinnati I'm getting them to do his dental work. Richmond wont do it until we get his airway check again. I just no that he cant wait no more he needs his teeth fix. They hurt him so bad. I still say that's why he isn't eating, like he should.

He don't like it outside much hear lately why i don't no. i think his eye has something to do with it.

It's almost Holloween i cant wait. Im taking him out this year to get him some candy. he is going to be a little monkey. I hope he will wear it. I will take lost of pictures.

Just remeber EB awareness is this week.

This has been a crazy week. We left Tuesday to go to Cincinnati Evan woke up with a corneal abrasion. But he slept on the way to Cincinnati. The first day we saw the eye doctor and the ENT doctor. The eye doctor said he had a bad abrasion. The ENT doctor said his vocal cord are swelling. He said he need to go to the OR and get his airway check. So that was schedule for Friday. Then the next day we went to see the EB team. They did some cultures on his wounds. They also looked at his penis, because he has been having problems peeing still. So he said when he goes to the OR, they are going to open him and put a stint in. So Friday comes and his surgery isn't until 3:20. So i new it was going to be a long day. The doctors was running an hour behind. I said OMG. Evan did good he slept alot that day. He went into the OR it took awhile. I talk to all the doctors when they got done. The ENT doctor told me he will need a trach really soon. His airway is getting smaller, so that is so scary. Then the Urology came to talk and he said he put the stint in and cute his the skin more. He said that we need to keep it in as long as we can. So we are hoping when we take it out his hole will stay open. Then they did some blood work to. His blood work came back and his iron is low again. So he will need iron infusione done again.
So any way Evan little boy part is sore. But he was so glade to be home. He has played and played. We are so glade to be home. We was going for 5 days.

Evan got him a pumpkin




Going on a hay ride.

Hannah had surgery yesterday she had 6 teeth taking out. She did really good. She is hurting today, she is out of school the rest of the week. So today is going to be a long day, she don't feel good and all she is doing is crying. There is nothing that i can do for. But i do love on her to make her feel a little better. I hate to see my kids in pain.
Evan is doing good. He is getting blister all over him. His diaper area is really bad. I took him to the doctor and they are putting him on some antibiotics. He has a lot of sores with yellow stuff coming out of them. We are going to Cincinnati next week.

We didn't have to go to Cincinnati after all. The ENT in Roanoke checked his airway. His airway is good, his vocal cords are swollen a little and his larynx are swollen. So the good news is no trach. The trach is the last thing i wont. The hard breathing is because of his vocal cords. He did good when they scoop him. Now we need to get his teeth out, and i think he will be okay.

Evan has to go to Cininnati tomorrow. Thursday the ENT doctor is going in to look in his airway. Evan is still having some problems with his breathing. They are talking about putting a trach in him. So everyone say prayer for him. I really don't wont the trach, but i guess if its going to help. I will do it.
Evan is doing okay he has wounds that aren't healing. His teeth are still hurting him. We are suppose to have surgery on them Thursday but we have to get his airway check first. So when we get back home the dentist in Richmond will do his teeth.

I took Evan to Richmond yesterday to meet another dentist. He was wonderful. So we was there all day yesterday, to get Evan ready for surgery. Everyone there was nice. Evan is having surgery on the 30 of this month. They are going to fix his teeth or take them out. They don't know what they are going to do until he is under. He wouldn't set still so they could look in his mouth, and they didn't wont to cause no more blistering or tear of his skin. So he said just wait until he is out. So i cant wait until his teeth are fix. I no he will feel so much better. We was at the hospital all day yesterday and Evan was so good. He was so tired on the way home he sleep and it was a 3hr drive, we came home he played with his sisters. Then i gave him a bath and did his dressing changes. He was back to sleep at 9:oo and sleep all night. I was so glade.

Evan is doing good. He still eats when he wont's to. He is 26 pounds the doctors said that is good. We are going to Cincinnati October the 14 to see all the doctor up there. Evan toes are still hurting him and they still wont heal. I just don't no what to do for him there. He is really talking now. I cant believe he is putting words together i love it. I didn't think he would talk.

So on the 30 everyone say a prayer for him for his surgery that everything goes okay.

Today EVAN TURNS 2.

HAPPY BIRTHDAY EVAN.

I can't believe Evan is 2. He has had a rough two years. But he is strong and he is a fighter. We are going to fine a cure for this illness. We are having him a party today at pizza hut. He loves pizza. So we are going to have some Friends and family there.

He is doing pretty good right now. His teeth are still hurting him. We are going to Richmond Wednesday to meet a dentist. Cincinnati wouldn't take his insurance so they helped me fine a dentist in VA. So when we go Wednesday I hope they can fix his teeth soon.

He is eating good right now. So i hope he keeps on eating like he is.

He still has sores that just wont heal. His hips are so bad and his diaper are is so bad. His toes are still not healing.

It is getting cooler outside now. So we can go out and play. But we still cant stay out long because of the bugs are so bad. So we just cant win for nothing. We went to the park the other day and he had so much fun. But all the little kids was just looking at him. They wouldn't stop looking. How do you tell little kids about Evan. They don't understand. But we just kept on playing. Evan was trying to play with some of them but they wouldn't play with him. That was so sad. I hate to see when he gets older what people will say or do. But i know people just don't no about this terrible illness. Evan's face is the worsted on him and i wish it wasn't. But it will be okay.

It has been a good week for Evan. I got sick Wednesday vomiting. So Evan went to his grandmas so he wouldn't get it. I'm so glade he didn't get it. I thought i was going to die.

Anyway Saturday we had a little party for Evan for some of my family, because they are going to the beach and wont be hear for his birthday. We had his party at the park. Evan had so much fun he open his presents and had a good time. He favorite toy was his truck. He has every truck you can think of. Then we went over to the ducks he just loved them. Then we went to ride the train. At first he didn't like the train. Then he saw the other little kids there and he did okay. So we got on the train and he loved it. I wish i had some pictures.

Evan finally started to eat, I'm so glade. He still not eating like he should. His teeth are really giving him a hard time. We go to Cincinnati on the 14 to get his 8 teeth fixed. They wont to cap them but i told them no, because it's going to cost me 2thousands dollars. If they take them out it's not going to cost 2thousand dollars. I have to pay for this out of my pocket. I don't understand. So when he gets his teeth fix i hope he will eat.

Evan has had a rough week again. Evan hasn't been feeling good again. I took him to the doctor yesterday to check his iron level is was 7.2. So went to the hospital to day and they gave him a blood transfusion he did so good. I was so happy, he stayed in the bed all day, and he played with his toys. He watch TV, he was the best little boy. Now he looks so much better. I hope this makes him feel better, and some of his wounds heal.
Evan still not eating I'm so worried about it, I'm going to talk to them about the G Tub. I'm afraid he isn't getting what he needs.
He is still having problems with his peeing. He is having a hard time again. I did open him up to day, but i don't think it's going to work. he

Evan has had a rough weekend. He got up Friday morning and he couldn't open his eye. I new what was wrong he had corneal abrasion. So the weekend came and he got worse. He couldn't open it at all so all weekend long i had to hold him. It was bad. I was going to go crazy because he was just cry and cry and say mommy mommy. There was nothing i could do for him. So Monday we got into the eye doctor and he had the corneal abrasion so he gave us some drops for it. He said if no better by Friday bring him back. To day is Wednesday night and he has his eye open all the way and he is feeling better. I'm so happy.
His peeing problem is doing okay for now. I'm not saying much about it because every time i do he has problems.
His breathing is still the same. When he gets hot he has problems with his breathing.
I took him to the doctor to Monday and his toes are infected. So he is on antibiotic again. Now he is on antibiotic he is going to have the yest problems.
Evan still not eating like he should but let me tell you he is 27 pounds. I can't believe it.
Evan will be two years old this time next month. Where did the time go. I just cant believe it he has came along ways. He is such a fighter. What to do for his birthday. He don't need no toys and he don't need nothing. So i think i'm going to tell everyone to give money and the money is going to go to the Debra to help fine research for EB. So they can fine a cure for EB.

Evan tractor that his granddaddy got him.

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.

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.

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.

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.

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.

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.

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.

We had a party for Chyanne today. Her birthday is July 4. She will be 9 years old my a baby girl is getting so big so fast. where did the time go.
I wouldn't to have it today because we are going back to Cincinnati Tuesday. We don't no when we will be back home.
Evan is going to be put to sleep and get scooped to see what's going on in his airway. I know everything will be okay. They said if he gets trach will be there for awhile so i can learn how to take care of. I don't no if i wont him to have a trach, but if it's going to help him breath i guess i will. He is also going to get his little boy parts looked at. He is still having a hard time peeing, his hole keeps on closing. So they are going to see what they can do. HE is also going to get his blood check to makes sure his iron is okay. So we are going to have busy week and Evan isn't going to be happy at all.

We had a good trip. We meet some awesome people. It was so good to talk to people there that know what you feel.

We took Evan to the dentist there and they didn't do nothing to his teeth we go back in 3 months and then they will cap them. I wish they would have done it now. They said that his teeth need to come in some more. What do i know. I think they should have caped them.

We went and saw the ENT doctor. He scooped Evan and his vocal cords are even thicker and swelling. and he had a blister in there. We go back to Cincinnati July 1. and they are going to put Evan to sleep and look in his airway. If he thinks Evan needs a trach he will put one in then.
Evan cant go outside and play now. The doctor said the heat is making his breathing worse. SO now we have to keep him inside that is going to be the hard thing to do. It's so sad he looks outside and he just cry to go out. What do you do.

Evan is still having a hard time peeing. I had to take him back to Dr. this morning so they could open him up. He still cant pee. This is two nights now that he has been up because he cant pee. Mommy is getting really tired. But i will be okay.

He still not eating. He might eat one little meal a day if that. I'm so worried because he isn't eating. The doctors said that he will be okay. I don't wont him to lose no weight.

I'm going to try to lay down. I'm so tired

This has been crazy week. I'm trying to get stuff packed for Cincinnati.

Evan is doing better then what he was doing. I had to take him to the ER Friday night he was having hard time with his breathing. They didn't do nothing. His oxygen level was good so we was happy with that. When we go to Cincinnati i hope the doctors can help us with his breathing. When you see your child having a hard time breathing it scary.
Evan face is clearing up to. I'm so happy.
Now his diaper area is bad. He has yest so bad. And it wont go away. He has had it for 4 day.
He hasn't been eating either again. His mouth is so red so i guess that's why he isn't eating.

We will be going to Cincinnati for the conference i cant wait to meet other family's. And be able to talk to other parent that no what we are dealing with.

Evan just talking i wish i new what he was saying.

Evan had to go and see the ENT doctor today. His breathing still hasn't been good. So the ENT doctor is going to check his airway to see if he can see anything. We are worried about his noise to, because his noise bleeds now all the time. Evan cant lose no more blood he is already anemic. So they are going to put him to sleep and put the Silver nitrate on his noise. I don't no when the surgery will be done. They are going to try to do it soon. So i hope I'm worried about his breathing. He can't do nothing and his breathing gets so bad that he has to sit down.
He still not eating like he should. His little boy parts is still hurting him. But he is peeing.
I got the pool at this week and I put it up, I put Evan in it and he loved it.
It has been to hot to play outside, so we have been stay inside. It is making me go crazy. But i guess i will be okay. I feel so bad for him because he cry to go outside with his sister. Its so sad. I hate EB.

It has been crazy around hear. Friday morning i had to take Evan to the Urology, he got up and his diaper was dry, so i new there was something wrong. Abut two hours later he started to scream and cry and wouldn't stop, so i new there was something wrong. So we went to the Urology. He said that it was almost closed up. SO we had to get the nurse in there and she had to help he hold him. The had to put the catheter in and he couldn't get it in so he got something else and got. Then put the catheter back in to get some of the pee out and to see if he had any infection. He didn't have no infection. SO that was good.His boy part is still hurting him.

Evan has been itching alot. SO they called some new med. for him so i hope this helps him. His face is still looking bad. He touches it now and the skin tears off. I wish i new what to do for him. i keep him inside where its cool.

We are going to Cincinnati in 3 weeks. We are going to see the dentist when we are up there. His teeth are still hurting him.

Evan is doing okay he is getting alot of new blisters. His face is looking bad. I don't think he can go outside that much now. When he goes out there he turn red and his breathing gets really bad. SO I'm going to call and talk to the doctor about that. I have had him in this weekend and his breathing is a little better, but he still breathing hard. He is have problems again with his little boy part. He is having a hard time peeing.

I wish he would wake up one morning and be EB free. That would be so nice.

His teeth are still hurting him. They are so decayed. So I'm waiting for the doctors in Cincinnati to call me so we can go up there and get his teeth fixed. I hope soon.

He is still a little fighter and he keeps on going. That's what i love about him. He is a fighter.

Hannah graduation pictures.


My two girls.



My lil man

My lil man being a monkey

Today Evan is 20 months old. I just can't believe it. I didn't think he would be hear, but he is and he is the happiest boy ever.

Evan is doing good. he goes tomorrow to get his blood check to see how is levels are. I hope good. He hasn't been eating today. I guess he has blister in his mouth. He has been so happy and so good this week. That i just love it, he is such a boy. His face is looking bad again. His teeth are really hurting him to. I think I'm going to have to call the dentist again and tell them that they are going to have to do something for him. I think that's why he wont eat.
There's nothing really else to write, he is just doing good and I'm happy that he is doing so good. So think everyone for praying for him. God is good.

Evan is having some problems with the rest of his teeth. The one's that came in was looking pretty good and now they are breaking off and they are hurting him now. So i called the dentist in Roanoke and they are going to see him today. I don't think they will do anything. But someone will do something soon. I don't like him in all this pain.
The heat is really getting to him again. So i had to turn on the AC. He is getting more blisters. His face looks bad now. I had to wrap his arm today that is the first time i had to do that for a long time and let me tell you he don't like it at all. He has done took it off twice now. So i don't wont I'm going to do.

Hannah is still have problems with her stomach. We are trying to get her cleaned out but it's been hard. They gave some suppository's and she don't like it at all. But it working now. But it really making her stomach hurt.

Hannah feeding the animals.

Hannah at the Zoo

We went to the ENT doctor yesterday. It went good they are checking him for allergies, So i hope we will no something soon. His breathing hasn't been that good, he told me when he get really bad for me to bring him in and he can give him steroids for his breathing. I didn't know that. We are really worried about his noise he said for me to keep on what I'm doing. There is nothing they can do for his noise. I wish they could.
When we got done we went to eat lunch. We was eating and you know everyone was looking at Evan. I'm trying not to let that get to me but it is so hard. So anyway i had a nice lady came up to me. and she said did your son get bit by a dog, i said no i haven't heard of that one before and she just looked at me. Then i told her about Evan condition she said I'm so sorry. She was really nice, so i was nice. Then i had a guy come up to me and he asked me what happen to him, he said did he get burned i said no. Then i told him what Evan had. He was a preacher he asked me if he could pray for Evan and i said yes. He asked me if he could touch Evan's head i said yes but i said he might not like it because he don't like people. Will Evan let the preacher touch him and we prayed and Evan didn't cry at all. That was just amazing.

Hannah test came back and she is okay. It's not her liver or her pancreas. She is constipated so i have to get her clean out. So she is on milk of magnesia. I hope this helps. I just hope we can get her cleaned out and it dont happen again. She was in some pain. So thinks everyone for the prayers.

Evan is reading the bible. Sorry it didn't turn out that good i don't no what happen.

Evan an his sisters was play with his trucks.

That was Evan again reading the bible. That isn't clear either. Sorry i don't no what happen. If i new all the videos was going to be like that i wouldn't have put them on hear. Sorry again

Evan is doing okay. He still has the cough i think its just Allergies. His breathing has been bad he is doing some breathing treatments. They are helping him. His skin is looking better now. Evan is having a hard time peeing again so i have to open him up again. I wish there is some thing we can do about that. I hate doing that to him.

Hannah is going for a CT Scan on Friday. So i hope they can tell me something. She has been eating good this weekend. I really hope it's nothing major, hopefully they can give her med to help her.

Evan is doing good. He has a bad cough right now. He isn't eating good either. But doctors said he is okay. He is having problems again with his penis i had to open him up last night. I hate doing that. He is loving this warm weather he wont's to stay outside all day long. But the heat is putting a lot of blister on him. So what do i do. I let him play for awhile and i bring him in. His grand daddy got him a sand box and he loves it, he played in it for ever yesterday. Then he was throwing the sand on his sister so i had to get him out. He didn't like it at all.

Hannah is doing okay she is getting a CT scan done on the 23 so i hope they fine something. She still have having a lot of pain in her stomach. I hope they can give her something to help her. she isn't eating either and she needs to eat she is little. So thanks everyone for the prayers.

Easter morning



Evan coloring Easter eggs with his sisters



Finding Easter eggs

I hope everyone had a good Easter. We had a good Easter. My kids had so much fun this year it has been so nice hear so we have been outside all weekend hiding Easter eggs. So you no I'm glade Easter is over. I had fun hiding Easter eggs i just glade its over.

I had to take Evan to the doctor Friday he has a cold but its not that bad. So i was so glad. We got some medicine for him and it helped, he still has the cough but no more fever.

Evan not eating good again, i don't no why. I just make sure he is drink a lot. He has a lot of sores on his toes and his face, some on his buttock. I guess its just the heat.
I cant keep him in. He loves playing outside with his sister. He was outside yesterday and he was playing with his cars on the side walk and he his arm gave out on him, and he hit the sidewalk with his face. It was bad. So now he is missing some skin on his face. I felt so bad for him, i hate EB. He try s so hard to do stuff and he gets hurt his skin tears or he blisters.

I need everyone to pray for my daughter Hannah. She see the GI doctor every 6 months. She has some problems, any way her blood work came back and her blood count is down. SO they are going to do a CT scan on her stomach to see what's going on. She don't wont to eat and she is so tired all the time. So just keep her in our prayer. Hannah is 4 years old.

Evan is doing good. He is having a lot of blister but i think its the heat, its starting to get warm and his body don't like it. He has alot of blisters in his head he has never had that bad in his head. His toes is looking some what better i unwrap them at night and its working. His toes are staying to moist and they wont heal, so at night i unwrap them.
We went to see the GI doctor yesterday and it went okay. He is worried about his iron. I'm having a hard time getting Evan to take his iron med he takes it but not all of it. he gets sick and it comes out. He said Evan looks good and he is doing good. So that's good. We like to hear that. Evans labs came back and is iron was really low so I'm glade we got the iron infusion done. His vit. D was high so we had to stop his Vitim D med. So that was good one less med i have to give him.
We are ready for Easter. We are going to church Saturday for the Easter egg hunt. Evan is going to have so much fun. I'm going to let him fine some eggs we will love it. i will take lots of pic.

Me and Evan at the zoo

Evan in the hospital after his surgery.