My 3 baby's on Christmas eve.

We had good Christmas. Christmas day we took it easy we stayed home most of the day and the kids played with there new toys. He got train table and he loves it.

Santa came to our house today.

Christmas 2011

Evan had his surgery he did good. The urology doctor is going to change out Evan's catheter every 3 weeks now. Because he just cant make it to the 4 week. The ENT doctor check his vocal cords and everything is still the same looks okay. His noise got clean up they silver nitrate it and it looks really good. I just wish it would heal. They did a biopsy on his tongue to see what it was. we will no something in couple days. I just hope its nothing.
We went and say the eye doctor to and his right eye lid is missing alot of skin. He is worried about his eye. I have to keep his eye good and moist all the time. IF not he said he could lose his eye sight and we don't wont that. He said that we will have to do some skin grafts if no better soon. so i wont that now why wait. So any way we go back there in 6 months and if no better he will do some skin grafts on his eye lids. It will help for awhile. The only thing that will help it heal all the way is a cure for EB.
We go back to Cincinnati to the EB doctors in March. When we go up there i hope they will do it while we are up there. But i no they wont. But I'm going to see what i can do about that. I cant wait to go back up there and see all the doctors. I just wont to thank everyone for all the prayers for my son.

Evan loves the train under the tree.

We had good Thanksgiving with the family. We went to my grandma's house. The weather was nice so the kids played outside. Evan was feeling good so that was good.

While the kids was home we decorate the Christmas tree. They did it all, and they did a good job. I didn't put everything out this year like i did last year.

Evan has been doing pretty good, he has had cold for awhile and bad cough. So i think I'm going to keep him out of school until the first of the year. To see if that helps. I hate to do it, but i don't wont him to stay sick either.

Evan is having surgery again next Tuesday. He is getting new catheter and then the ENT doctor is going to clean his noise and look in his airway. Evan also has something growing on his tongue so they are going to look at it to. I hope its nothing and everything will turn out okay. So if you read this please pray for good news.

I had to take Evan to UVA yesterday to see ENT doctor. Evan's noise is getting bad it's not healing and his noise is closing up. He has something on his tongue that is growing. So when Evan goes to the OR in December for his tube change, the ENT doctor is going to look at his tongue and silver nitrate his noise again. They wont to look at his air way but i don't think I'm going to let them. They aren't going all the way down just to his vocal cords, but its still to dangerous. I just wont to no what's on his tongue is. Maybe that's why he don't wont to eat. Evan doesn't eat nothing at all, he does drink. So everyone please keep Evan in your prayers.

Evan school picture. She did a good job on it she touched it up for me. You cant see his boo boos on hear. He looks so big, my little man is growing up on me. Evan mommy loves you so much.

My three baby's. We had a good Halloween.
The girls went trick or treat they had a good time. Evan didn't wont to go, he stayed with his granny and his paw paw. He help hand out candy.

Evan had surgery on Tuesday he had to get new catheter. He did good.

We got some snow this weekend. So the kids played out in the little bit of snow we had.

Evan is having hard time with his catheter right now. He is having surgery on Tuesday to get new catheter. I hope it stay open until then. Last night at bath time he screamed he didn't wont to take bath. He said mommy no please mommy no don't flush my tube, don't wash me, it hurts me so bad. That just breaks my heart. My little man has to deal with this everyday.

Chy Evan Hannah

Me and the kids carved pumpkins last night. Evan didn't like the stuff inside of it. So me and the girls cleaned and carved the pumpkins. When we was done Evan love the pumpkins.

Evan has been doing okay. He is having surgery on Tuesday he is getting new catheter again. I hope it makes it until Tuesday. He is having hard time with it right now its getting clogged up and he has UTI.

EB awareness is this week and we need a cure for EB.

This is why we need a cure. I have to watch my son cry to pee, or i have to watch him scream when he has bowl movement. I just hate it. Or when i take his diaper off it is stuck and i tear is skin. Or when i take his bandages off they are stuck and i tear his skin again. Or when i put him in the bath all he does is scream. There is so much that he deals with he stay in pain all day long. Its not far. I pray everyday for a cure for EB.

EB AWARENESS is this week.

We need a cure for EB.

These kids dont need to be in pain all the time.

Go to DEBRA.ORG

to learn more about EB.

Evans foot.

Evan eyes they wont close no more.

Evan blister on his foot.

We are waiting to hear back from Make A Wish Foundation. They came and interview us last week. Evan wish is to meet Denis Anderson he drive Grave Digger and he wont to ride in Grave Digger truck. Then he wont the power wheel Grave Digger. I just cant believe we got interview with them. He love Monster Trucks. That's all he plays with, he plays with is trains to.

Evan has been sick on and off for the last month now. I think I'm going to take him out of school i hate to do that because he likes school. He don't like me leaving but after i walk out of the room he is fine. They say he does so good. He talks to them and he does what everyone else does. School makes him so tired, when he gets home he lays around the rest of the day. I don't no what he will do when he starts school all day long.


Tomorrow he goes to the pumpkin patch with his school. We are going to have so much fun. He will love it. But he will be so tired when we get home.

I took the kids to the pumpkin patch last weekend, Evan didn't go because he wasn't feeling good. He is going Monday with his school. The girls had so much fun the weather was nice. I wish Evan was with us. I hate when he cant go.

Hannah

Chyanne

Lucas Chyanne Hannah

Evan has his surgery yesterday. It take us two hours to get there and he cant have nothing to drink and he did great. When we got to the hospital he was okay until they called us back to the room. He was mad and he was a hand full. The doctor came in and he said we will get him back in the OR now. And they did, i couldn't believe it. So i carried him back to the OR, i was holding him while they put the mask on his face. We got him on the table, i kissed him and told him i love him. So i went back out to the waiting room and got me something to eat. Wait for the doctor to come out and tell me what he did.
So the doctor came out and said Evan did fine, he clean out his bladder, put his new catheter in. He said i can come back in few they was putting his dressing back on. So i waited for them to call me back. So finally i got back there and he had some oxygen on him so i started freaking out. They said he is okay. But his airway didn't wont to stay open in the OR. So they had to give him some oxygen. So finally he woke up and he told me, I'm a wake and i got my new tube. Man i love that boy. He is so strong.
So we came home and he laid down for awhile. I asked him if he wont's to go out on the porch and get some sunlight. The weather was nice it was cool and the sun felt so goo. That even got him ready for bath and he was in some pain. After the bath he was still hurting. His bladder was hurting him so bad. I put him to bed and he went back to sleep. I'm not sure why his bladder is hurting him so bad.

Evan is having surgery in the morning. He has to get another catheter put in. I wish Evan could pee right so he wouldn't have to have all these surgery. I hate to put him to sleep. Evan diaper area is still really bad. He has yeast like i have never seen before. He is itching so much now i don't no what to do. His foot is getting better. He can walk and play now. The weather is getting cooler now, so hopefuly we can go outside and play.

Please read Tripp blog. He has Junctional EB like Evan. Tripp can't see no more. His EB took his eye sight. He is two year old boy that cant see and he cant go out side and play. His mommy is a wonderful mom. She is with him all day everyday. We need a cure for EB.

                                                       Evan walking into school

                             He is washing his hands before he goes into the class room

                                                       His 2nd day of school

                                                             he loves it

                                        3rd day of school. It was Teddy bear day.

Evan and his doggy. Love the smile

Evan really likes school. He goes two days a week, 3 hours day.  Getting Evan there and me leaving him is still hard he does cry. I stay out in the hall way to make sure he is going to be okay. The teachers come out and says he is just fine. When i go pick him up he is so happy and he tells me he loves it and he had so much fun.  I'm still scared to send him its flu time. But if there is alot of kids out sick we wont send him that week. He likes school so i think he should go and have fun. He needs to have fun. 

                                                    This is Evans foot.

I had to take Evan back to the doctor yesterday. He had fever 100.6 his foot looked really bad. When i took his shoes and sock off he had the big blister on his foot, I felt so bad.So i new he had infection. He also has bad cough. So he on some antibiotic and breathing treatments. It's getting cold  and Evan will love it.  

Evan had to get his blood check again. So Friday we wen to the health department and got his Hemoglobin check and it was 6.5. So we called Roanoke to see if they could give him some blood. They said he could come up Saturday and they will start it. So we went up there Saturday to give him his blood. We didn't get home until 1:00 Saturday night.

Evan got his blood and he is feeling so much better. He does have cold now. So i hope he feels better soon.

HAPPY BIRTHDAY EVAN

My little man turn 3 Sunday. I can't believe Evan is 3 already. It has been long 3 year. Evan had big birthday, he had monster truck birthday party.

I hope everyone had good Labor Day.

Chyanne and Hannah getting ready for the parade.



Evan at the parade.

Evan is having hard time with his catheter again. I had to take him to UVA to see the Urology they tryed to get his catheter open and it wouldn't. So we had to get him in the OR. He had to get a new catheter. So they told us that they couldn't get him into the OR until 4:45 i said OMG. So we went to the mall to kill sometime. He got tired of that so we went back to the hospital. The weather wasn't to hot so we set outside for a little while. I heard the loud noise then everything started to vibrate didn't no what it was. Some people was coming out of the building and said it was Earthquake. So come to fine out it was Earthquake.
Then the time finally came and they call us to come back to get Evan ready to go to the OR the time was 5:00. Did i tell you i was really mad, oh yes i was hot. Evan was hungry he was cry for his cup. I told them they need to get moving. So finally at 6:30 we went back to the OR. Evan got his new catheter. He did good.
We finally got to come home we didn't get home until 10:00 that night. Evan was so tired. There is something still wrong. He is still hurting. So we go back to Cincinnati i hope they can do something. I hate to see him hurting so bad.

West Va. Fair.

Evan before surgery.

Evan had to go to UVA and get his new catheter. Evan wasn't happy at all when we got there. The gave him some medicine to clam him down. And it worked. Then they came and we had to go back to the OR. So we went back there i held him until he went out. So i went to the waiting room to wait for him to get done. The doctor came out and talk to me, he said that Evans catheter was stuck they had hard time getting it out. He said that Evan will have some blood in his bag when i go back there. I said okay.

So finally they called me to come back there now, they said hear up because he is mad and wont's his mommy. I heard him cry so i went running to get him. They hand me him and we rock to see if it would claim him down and it didn't. Then he pulled out his IV. They said we need to get him clam down he is going to tear his skin up. I said yes he is. So finally i got his cup but his pedisure in there and he was started to clam down. I was so glad, he scared me. we stayed there for a little while longer, to make sure he was going to be okay.

We got home and he was so happy he played with his sister for awhile. Then he got tired so he went to sleep. When he woke up he was okay. When it was bed time he was in a lot of pain. I don't no what was going on with him. He said my tube hurts. So he cry out and wouldn't stop cry. Finally he went to sleep.

Evan has been doing pretty good. He hasn't been sleeping that good. But he keeps on grabbing his penis and telling me it hurts. So i new he was getting another UTI. His pee started to get dark so i took him to the doctor so they can check it and he has nother UTI. I just don't understand why he keeps on getting one. So that is making him feel little bad, but he is doing OK.

He hasn't been able to play outside because it has been to hot. Today was little cooler so i took him and the girls to the fair. My cousin was going so we met us up there. Evan had so much fun. He loves the rides. We had alot of people looking at him and talking. But i just went on and didn't look or say nothing. I know my little man looks different but he is the cutest thing ever.

We are getting all of his doctor appointments together for next month in Cincinnati. He is going to see all kinds of doctors, we have 3 days of doctors. I wont Evans eyes to heal up some they are looking so bad. And at night time he cant close the left one no more. I'm hoping they can do something.