Friday, December 31, 2010
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.
Thursday, December 23, 2010
Thursday, December 16, 2010
Monday, December 6, 2010
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.
Wednesday, December 1, 2010
Tuesday, November 30, 2010
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.
Friday, November 26, 2010
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.
Friday, November 19, 2010
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.
Monday, November 15, 2010
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.
Saturday, November 6, 2010
Monday, November 1, 2010
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.
Monday, October 25, 2010
Sunday, October 17, 2010
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.
Thursday, October 7, 2010
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.
Wednesday, September 29, 2010
Tuesday, September 28, 2010
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.
Thursday, September 16, 2010
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.
Saturday, September 11, 2010
Monday, September 6, 2010
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.
Friday, August 27, 2010
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
Wednesday, August 11, 2010
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.
Saturday, July 31, 2010
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.
Tuesday, July 27, 2010
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.
Sunday, July 25, 2010
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.
Tuesday, July 20, 2010
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.
Monday, July 12, 2010
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.
Monday, July 5, 2010
Friday, July 2, 2010
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.
Sunday, June 27, 2010
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.
Tuesday, June 22, 2010
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
Sunday, June 13, 2010
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.
Wednesday, June 9, 2010
Friday, June 4, 2010
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.
Monday, May 31, 2010
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.
Sunday, May 23, 2010
Wednesday, May 19, 2010
Tuesday, May 11, 2010
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.
Tuesday, May 4, 2010
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.
Thursday, April 29, 2010
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.
Monday, April 19, 2010
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
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.
Tuesday, April 13, 2010
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.
Wednesday, April 7, 2010
Monday, April 5, 2010
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.
Wednesday, March 31, 2010
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.