tag:blogger.com,1999:blog-76788943847251810192024-02-19T07:00:10.336-08:00Evan's JourneyEvans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.comBlogger326125tag:blogger.com,1999:blog-7678894384725181019.post-2404306654511710552013-11-22T04:33:00.001-08:002013-11-22T04:33:53.606-08:00<div class="separator" style="clear: both; text-align: center;">
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EB Awareness week</div>
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Where to start Evan has been doing okay for now. He is in school and loves it still. <br />
In October Evan was admitted in the hospital. He had bad UTI and skin infection. He was on two IV antibiotics and on he had to take by mouth. He also had abrasion he had his eyes closed for 13 days. He missed 3 weeks of school while he was sick. <br />
Then we had to go to Cincinnati to see his doctors. I was worried because he was getting so many skin infection. They really couldn't tell me why. Then we saw the skin graft doctor she said we cant do no more skin grafts because he hasn't heal for m the last one. they are going to try and use pig skin. We will go back to Cincinnati to try that after Christmas. <br />
Evan had good Halloween he wore his costume and got a lot of candy. <br />
Now we are getting ready for Thanksgiving and Christmas. He has made his list for Santa. He keeps on telling me when is Santa coming.<br />
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Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-35744033559213498492013-09-23T07:54:00.000-07:002013-09-23T07:54:09.618-07:00<strong><span style="font-family: Georgia, "Times New Roman", serif;">Evan has started school and he loves it. He is doing really good. He does miss some of his friends from last year. But he is making new friends. </span></strong><br />
<strong><span style="font-family: Georgia, "Times New Roman", serif;"></span></strong><br />
<strong><span style="font-family: Georgia, "Times New Roman", serif;">Evan just turn 5 on September 11. I still cant believe he is 5. He has had hard 5 years, but he is strong and a fighter. We are going to keep on fighting for cure. So he can be EB free and so can the other kids and adults. Evan wants to be like his friends he don't want the trach or his catheter. But I just keep on telling him one day he will not have it. Evan had great birthday. I got to take him to N.C. where he wouldn't to go. He got to see his two favorite drivers, Dennis, Ryan Anderson, they drive the monster trucks.. Then the next weekend we had him party with his friends. He loved it. He told me this was the best birthday ever. </span></strong><br />
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<strong><span style="font-family: Georgia, "Times New Roman", serif;">We have to go back to Cincinnati next month. to see the ENT doctor and see the doctor that did the grafts. I think we are going to do some more grafts. I want to do some on his toes. His toes are so bad.</span></strong><br />
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Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-12823317654810914972013-08-16T06:09:00.000-07:002013-08-16T06:09:24.690-07:00<div class="separator" style="clear: both; text-align: left;">
Evan has had a hard time lately. He has been fight skin infection, His trach keeps getting clogged up. He has been really sore. We are having good summer, we went to Tennessee for the weekend the kids had great time.</div>
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We just got back from Cincinnati for EB Clinic. We got to meet some new friends, and saw some old friends. Its so nice to meet other EB family. Evan had to go to the OR to get his SP Catheter changed out and they was going to see if they could open his penis. They couldn't open his penis it was closed all the way. They said maybe later on they might try to open and put some skin around the penis. But he couldn't do it right now. He was have some other problems with his trach., that came first. The ENT had to look in his airway. Evan had granulation tissue beside of his trach, he had to cute it out. His upper airway has gotten worse. No improvement of his upper airway. He said if Evan didn't get his trach, he wouldn't be hear.</div>
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So after surgery we went to clinic. They want Evan to drink PediaSure the one that has more calories. He needs to gain some weight. he hasn't lost any but he isn't gaining. We are going to try some new ointment and new dressing to see if it will help his neck. </div>
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Evan starts school in September he will go 5 days week for 3 hours a day. </div>
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Cincinnati trip.</div>
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Evans hip that they graft.</div>
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This is Evans other hip.</div>
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Evans neck. His neck has been infected so much.</div>
Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-3861454974401580102013-07-12T07:43:00.000-07:002013-07-12T07:43:35.921-07:00<div class="separator" style="clear: both; text-align: center;">
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Waiting for the fireworks.</div>
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Evans neck it will not heal. </div>
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Kids at Chucke Cheeses</div>
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This summer has been to hot. Evan sores are so bad. We go back to Cincinnati next month to see all the doctors. Evan is having surgery also, they are going to see if they can open his penis. I hope it works so Evan will not have the SP Catheter.</div>
Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com1tag:blogger.com,1999:blog-7678894384725181019.post-73300406627535236592013-06-25T06:16:00.001-07:002013-06-25T06:16:15.068-07:00<div class="separator" style="clear: both; text-align: center;">
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Evan at T Ball.</div>
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He would not hit the ball.</div>
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Evan and his friends.</div>
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Evan got his trophy for T Ball.</div>
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Evan has been doing okay. Two weeks ago he has skin infection. He had yeast staph strep. He is doing better now. </div>
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Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-22968731025361250642013-05-28T18:33:00.001-07:002013-05-28T18:33:53.832-07:00<div class="separator" style="clear: both; text-align: center;">
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Evan has been doing really good. His grafts are doing better. The one on his hip didn't take at first but its doing better now. His eye is doing better also. I had to take him to the doctor to get the graft around his eye culture. It wasn't doing good. Its doing better now.</div>
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Evan has only couple more days left of school and he will be out for summer. He will go back to nursery school in September. I'm not putting him in kindergarten. He isn't ready and I'm not either.</div>
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<br />Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-84485603891743088832013-05-05T15:48:00.000-07:002013-05-05T15:48:22.265-07:00<div class="separator" style="clear: both; text-align: left;">
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Evan outside. This is day 3 of his surgery. </div>
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He had his skin grafts done on is eye.</div>
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Evan in his Son of Digger outfit.</div>
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Coming home from Cincinnati.</div>
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Getting ready to go back to the OR.</div>
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He is getting skin grafts done on his eye, and</div>
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Evan got new truck.</div>
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He was getting ready to have surgery.</div>
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After Surgery.</div>
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At N.C. </div>
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Kids at home playing</div>
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N.C. </div>
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The kids loved the beach.</div>
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Sorry about the pictures they didn't go on right..</div>
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Evan is doing good. He had surgery on April 29 for his skin grafts, and his airway to be check. They did his grafts on his eye, and his hip. We go back next week to get everything check. His airway has gotten worse. So I'm glade he has the trach now. The eye doctor had to look in his eyes. His eyes have been close for week. When they looked in his eyes he had bad abrasion in his left eye.. </div>
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When the people in N.C. read this we all said hi, and hope to be back soon. Evan loves his car. Thanks for everything.</div>
Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-15115562540205985262013-03-26T12:02:00.004-07:002013-03-26T12:02:47.649-07:00Evan has been doing good. He has some ups and down. Put doing OK. We have nurse now that comes in and helps me. Its been nice. I cant get some stuff done around the house and go to the store.<br />
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Evan and the girls are ready for Easter.</div>
Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com2tag:blogger.com,1999:blog-7678894384725181019.post-22872511499628881092013-03-17T13:02:00.001-07:002013-03-17T13:02:56.649-07:00<div class="separator" style="clear: both; text-align: center;">
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Pleas pray for Easton. He has EB and isn't doing so good.</div>
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I got to meet him and his family in Cincinnati. </div>
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Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-35741312968001756322013-03-17T12:59:00.002-07:002013-03-17T12:59:50.468-07:00<div class="separator" style="clear: both; text-align: center;">
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Evan has been doing good. His Velcro ties are tearing his neck up. His neck has never been this bad. He is back in school now, and he loves it. The kids missed him so much. Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-74670843785024585222013-03-05T11:47:00.004-08:002013-03-05T11:47:55.495-08:00<div class="separator" style="clear: both; text-align: center;">
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<strong>Evan was Thing One at school yesterday</strong>.</div>
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Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-22089769330399456452013-02-26T05:42:00.001-08:002013-02-26T05:44:09.057-08:00<a href="https://www.facebook.com/groups/191661084289854/">https://www.facebook.com/groups/191661084289854/</a><br />
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Hear is Evan's facebook page also.Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-31588969830168246302013-02-21T08:08:00.000-08:002013-02-21T08:08:13.207-08:00<span style="font-family: Verdana, sans-serif;">I had to take Evan to the doctor today. He was up last night with really bad cough, and fever. He has sinus infection or upper respiratory infection. He can never get break.</span><br />
<span style="font-family: Verdana, sans-serif;"></span><br />
<span style="font-family: Verdana, sans-serif;">We will be going back to Cincinnati soon for skin grafts and scoop of his penis. We are hopping to take His SP Catheter out. Evan wants his catheter out so bad. So i pray that he can pee out of his penis.</span><br />
<span style="font-family: Verdana, sans-serif;"></span><br />
<span style="font-family: Verdana, sans-serif;">Evan is doing okay with his trach. He still don't like it. His neck is doing little better. Evan is breathing so much better, he can play and not get out of breath.</span><br />
<span style="font-family: Verdana, sans-serif;"></span><br />
<span style="font-family: Verdana, sans-serif;">I want to say thanks to everyone for the gifts and card Evan has gotten. He has loved everything. We have got stuff from so many people and in people that don no us from different states. Its so nice to see that there is so many nice people out there.</span><br />
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Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com1tag:blogger.com,1999:blog-7678894384725181019.post-17676836994866770332013-02-17T11:28:00.002-08:002013-02-17T11:28:44.779-08:00<span style="font-family: Georgia, "Times New Roman", serif;">We had to go back to Cincinnati for EB Clinic. Evan had to have ultrasound on his bladder and kidneys. We finally got some good news. They said Evan was doing great. They might take his Catheter out when he has skin grafts. Me and Evan was so happy to hear that.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">We will go back in couple months so Evan can get his skin grafts, and then they will look in his penis and might take the catheter out. I hope and pray that it works.The ENT doctor will also look in Evans airway to check out things. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">While we was in Cincinnati this time i told Evan we would have some fun. So we went to the Aquarium. He loved it he had the best time. When we walked in there he said what about my trach, i said its fine. He said will the fish and the sharks like it. I said yes they will love it. Poor thing worries so much about his trach.</span><br />
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Evan at the pool.</div>
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Evan and Daisy eating pizza.</div>
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When we got home they had the monster Truck Show.</div>
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Evans favorite truck.</div>
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Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-5566905755542641792013-02-01T19:49:00.000-08:002013-02-01T19:49:25.885-08:00<span style="font-family: Georgia, "Times New Roman", serif;"><strong>We have had a lot going on. I had to take Evan to Cincinnati three weeks ago, because he was having hard time breathing. The ENT doctor said he had to scoop him to see whats going on. He said i think its time for a Trach i said no. So the day came i took him back to the OR, i felt bad i just new something was going to happen. I was sick to my stomach and i got upset. I never get upset. So i went to the waiting area, and it wast 5 minutes. i said OMG what happen. The doctor and nurse was there i new something happen. He said Evans airway closed up and he stopped breathing on the table his oxygen level went to 30. And he had to put a breathing tube in his airway to keep him hear. He said his heart didn't stop, but he did stop breathing. I said OMG. he said Evan needs a trach and i lost it. I didn't want a trach. So i said please do it. I don't want to lose my baby boy. So Evan was back in the OR for a long time. Then they put him ICU. I finally got to see him and he looked so bad. I said mommy is hear, and he pick his hand up so i could hold it. I got his hand and i said im not going no where. I told him that i loved him. It was so hard to see him in so much pain and he was trying to talk to me and he couldn't. I said its okay mommy is hear go back to sleep. </strong></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"><strong></strong></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"><strong>We was in Cincinnati for two weeks. Evan has done good with the trach. He is talking and eating good. His neck and his face has a lot of sores on it. So I'm trying to get it to heal. We go back to Cincinnati in couple more weeks.</strong></span> <br />
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The day Evan got his trach.</div>
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Couple days later.</div>
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Evan was up and out of bed.</div>
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His Balloon I got for him.</div>
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He finally was able to get out of his room and go for a walk.</div>
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Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com1tag:blogger.com,1999:blog-7678894384725181019.post-10450837672550142552013-01-09T17:23:00.001-08:002013-01-09T17:23:58.620-08:00<span style="font-family: Georgia, "Times New Roman", serif;">We all had good Christmas. Evan wasn't sick so i was so glad. </span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">He has been so sick hear lately.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">Evan has been sick again. His breathing has been bad. We go to Cincinnati in couple more weeks so his doctor can look in his airway to see whats going on.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">Last night Evan had really bad night. He could breath he lost the color to his face, his lips was white. I did good, i gave him breathing treatment sat him up, and then he vomit. He got color back in his face. Then he laid back down and went to sleep. I didn't sleep at all last night. I was so scared.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">So i called his doctor today he told me to bring him in and he would give him shot. So he got his shot, and he is breathing a lot better. I cant wait until the doctor in Cincinnati looks in his airway to see whats going on.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">So scared to see your child trying to breath and there is nothing you can do.</span> <br />
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<span style="font-family: Georgia, "Times New Roman", serif;">Evan hasn't been at school much either. I don't no when he will be going back to school. He loves school and he misses all of his friends. So i hope he starts to feel better and can go back to school with his friends.</span><br />
<span style="font-family: Georgia, "Times New Roman", serif;"></span><br />
<span style="font-family: Georgia, "Times New Roman", serif;">When we go to Cincinnati in couple weeks they are going to do his skin grafts. I cant wait, i hope it helps. I will post picture before and after. His little face is getting worse and it bleeds so much and he hates it. So i pray that it works</span>. Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-82030093186787861402012-12-23T15:27:00.000-08:002012-12-23T15:27:19.198-08:00<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Georgia, "Times New Roman", serif;">Evan is so ready for Christmas. My girls are ready for Christmas to. I just wont to wish everyone a Merry Christmas.</span></div>
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Evan watching for the train to come.</div>
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<br />Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-72179711579804976552012-12-10T18:34:00.000-08:002012-12-10T18:34:11.015-08:00<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Georgia, "Times New Roman", serif;">Evan watching the train coming in.</span></div>
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<br />Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-39110255753862318472012-12-06T05:04:00.005-08:002012-12-06T05:04:53.775-08:00<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Georgia, "Times New Roman", serif;"><em>They where reading about the Polar Express and watching the train. Evan was into it. He loves trains</em></span>.</div>
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Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-53860608951822484462012-11-25T07:22:00.003-08:002012-11-25T07:22:28.546-08:00<div class="separator" style="clear: both; text-align: center;">
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Kids putting the ornaments on the tree.</div>
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Evan has been doing better. We have put our stuff up for Christmas and he loves it. He says when Santa coming. <br />
Tomorrow I have to take Evan to UVA to get his new catheter and talk to the doctor about trying something else because his catheter hurts him so bad. He also has to get his blood checked. We haven't had it check in two months so we will see if he needs iron infusion. I hope he wont have to. <br />
We are still waiting to get his grafts done, the insurance is denying it. We are staying on them. If they don't pay for it, I'm going to pay for the rest of his eye to be done. He needs it done and i think it will help him feel better about his self. The graft on his eye lid took and its doing great. Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-21489872049185258282012-11-18T17:53:00.000-08:002012-11-18T17:53:21.517-08:00Evan has been sick. He had the stomach bug. It was bad. He is feeling so much better. <br />
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We went to the mall today to get out of the house. Because i was going crazy for being in the house all week. They had the train there. Evan loves trains. So him and his sisters rode the train couple times. Santa was there but they wouldn't go and set on his lap. Maybe next time.<br />
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When we go out everyone looks at Evan and say some stuff. I try to be nice and go on. Well today i didn't. I had my cards with me and gave them to people that looked. I had two men come up to me and say whats wrong with your son, and i told them. He said can we pray for him i said yes you can. There is nice people out there. <br />
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We are still waiting for the doctor to call about his skin grafts. We are waiting for Evan insurance to approve it. We are having hard time. You no that makes me so mad. If this will help him he needs it. But I'm going to keep on fight to. His graft on his eye work so why cant we get the rest of it done. He deserves it. All i do is pray that the insurance will approve it. Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-28489151359153673642012-11-06T18:22:00.001-08:002012-11-06T18:24:12.313-08:00<a href="http://www.youtube.com/watch?feature=player_embedded&v=OzatYr2tbaY">http://www.youtube.com/watch?feature=player_embedded&v=OzatYr2tbaY</a>Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-44602731988450129102012-11-01T14:10:00.000-07:002012-11-01T14:10:58.204-07:00<div style="text-align: center;">
<span style="font-family: Georgia, "Times New Roman", serif; font-size: large;"><strong><em>Happy Halloween</em></strong></span></div>
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<span style="font-family: Georgia;">I hope everyone had good Halloween. My day started i had to take Evan to UVA to get his catheter change out. Then after he woke up from the his surgery he couldn't pee again. So we had to stay there for long time. We didn't get home until 7:00. I was so mad. Because i wasn't home with my kids to get them ready for trick or treat. Chy went with on of her friends and Hannah went with Becky and Lucas. So when we got home i got Evan ready and we went to Tracy moms house. We only went to couple house because Evan wasn't feeling good at all. They made us dinner and we went home to eat. The girls finally came home and they told me all the fun they had. Man i wish i was with them.</span></div>
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<span style="font-family: Georgia;"> I got on Facebook that night and everyone had pictures of there family have so much fun trick or treat. I wish i could have post picture of my kids. But i couldn't Evan wasn't feeling good so i didn't get no picture of him. I just wish his EB would let him have fun one time. </span></div>
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<span style="font-family: Georgia;">Last year we wasn't home for Easter because he was sick, he didn't get to go on his field trip to the pumpkin patch because he had abrasion in his eye. then he couldn't have fun on trick or treat. EB is so horrible i hate it. </span></div>
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Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-79600154525874706352012-10-29T17:11:00.000-07:002012-10-29T17:11:18.755-07:00<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Arial, Helvetica, sans-serif;">74 Days since Evan had his skin graft on his right eye lid.</span></div>
Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0tag:blogger.com,1999:blog-7678894384725181019.post-34430727584774191452012-10-28T17:38:00.000-07:002012-10-28T17:38:58.267-07:00<div class="separator" style="clear: both; text-align: center;">
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<br />Evans Journeyhttp://www.blogger.com/profile/01150294041956653328noreply@blogger.com0