Wednesday, December 28, 2011
Thursday, December 8, 2011
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.
Thursday, December 1, 2011
Friday, November 11, 2011
Tuesday, November 8, 2011
Wednesday, November 2, 2011
Sunday, October 30, 2011
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.
Friday, October 28, 2011
Tuesday, October 25, 2011
Sunday, October 16, 2011
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.
Wednesday, October 5, 2011
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.
Monday, October 3, 2011
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.
Friday, September 30, 2011
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.
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.
Monday, September 19, 2011
Evan got his blood and he is feeling so much better. He does have cold now. So i hope he feels better soon.
Monday, September 12, 2011
Monday, September 5, 2011
Thursday, August 25, 2011
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.
Wednesday, August 17, 2011
Wednesday, August 10, 2011
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.