Wednesday, July 29, 2015

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Day +125 As much as I want to keep everyone updated my heart is mourning the loss of Baby Cole and I just don't feel like updating right now. Please keep praying for Cole's family. His Mom and Dad took such amazing care of him while juggling the care of his brother and sister back home. They now have to pack up the life they have made for themselves here and head back home. I can't begin to imagine the pain they are going through, mourning the loss of their baby while having to do so many other things right now. Please be praying for Cole's sister and brother as they mourn the loss of their baby brother. Prayers for Cole via Help Anton http://ift.tt/1IqL9Bt July 29, 2015 at 01:11PM

Monday, July 27, 2015

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Facebook update from Help Anton

I don't have the words nor do I think I ever will to express how heartbroken I am, Baby Cole passed away today. Prayers for Cole I love you sweet boy and I'm so thankful I got to be a part of your life. You are so loved and so missed. Ecc. 7:1-4 A good name is better than precious ointment, and the day of death than the day of birth. It is better to go to the house of mourning than to go to the house of feasting, for this is the end of all mankind, and the living will lay it to heart. Sorrow is better than laughter, for by sadness of face the heart is made glad. The heart of the wise is in the house of mourning, but the heart of fools is in the house of mirth. - July 27, 2015 at 05:52PM http://ift.tt/1r2lUi4

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Day +123 Anton has had a good few days. He has been in the best mood and has had all of his doctors and nurses cracking up. He has had several fevers this hospital stay but none yesterday. He woke up today with a temp of 101.7 so we will be here for a few more days. Still waiting on the biopsies to come back from his stomach. Jason came to stay with Anton yesterday so I could go to church. It was such a blessing to sit under the preaching of God's word and to fellowship with the saints. Anton and I took a huge nap yesterday afternoon and woke up at 7pm. Then we decided to have a party night, we walked around the halls of the BMT floor for 30 mins and watched a movie with Anton's nurse until 1:30am. We had a blast (I fell asleep a few times during the movie but Anton was wide awake, ha). Then we both woke up bright and early when urology came to check on him. Neither one of us were tired after that so we are awake and happy. I also added random pictures I forgot to post from the past few days. - July 27, 2015 at 09:09AM http://ift.tt/1r2lUi4

Saturday, July 25, 2015

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Day +121 I thought for sure Anton had a corneal abrasion yesterday because he did the same thing he use to do when he got them. He wouldn't open his eyes, was saying that the lights were bright, and was saying his eyes hurt. We had his eyes wrapped for about 12 hours then he asked me to take the wraps off and his eyes were fine. Praising God our sweet boy can open his eyes without any pain and no signs of a corneal abrasion!!! via Help Anton http://ift.tt/1eopRfP July 25, 2015 at 09:15AM

Friday, July 24, 2015

Facebook update from Help Anton

Day +120 Everything went well and Anton is back in his room. GI said his stomach, esophagus, and colon all looked good. He didn't have any strictures in his esophagus but it does have ring in it (I forgot what that was called). We will now wait for his stomach biospies to come back. They are checking for infection, viruses, and Graft vs Host. We will also be changing out his G-Tube for a GJ Tube to see of that will help him tolerate feeds. Urology was able to circumcise him without any complications. And his eyes are open and not hurting. Anton is actually in a good mood! Such neat answers to prayers. - July 24, 2015 at 04:24PM http://ift.tt/1r2lUi4

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Day +120 Sweet boy woke up with a corneal abrasion, low grade fever, in lots of pain, and not happy about going to the o.r. :( via Help Anton http://ift.tt/1em51xH July 24, 2015 at 10:41AM

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Day +120 Anton spiked a fever last night so we will be here for at least 2 more days (as long as he doesn't get another fever). He goes in the o.r. today to have a upper and lower GI scope, a dorsal slit, or circumcision depending on how swollen his man parts are, and I think that's all they are doing. I will keep y'all updated. via Help Anton http://ift.tt/1LHxcoa July 24, 2015 at 08:51AM

Wednesday, July 22, 2015

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Day +118 An orthopedic doctor came and checked out Anton's leg. It isn't broken but it is hurting him a lot so he said we could put a splint on it. This is what we have done at home when his leg hurt so much that he can't move it and it helps a ton. He said he would be back after clinic closed to put the splint on Anton but he ended up going downstairs got the supplies and came right back up here to put the splint on his leg. I was very thankful and very impressed! Anton is no longer complaining about his leg hurting when I pick him up! So thankful for doctors who listen and go above and beyond what they have to to care for our sweet boy! Anton will be going in the o.r. on Friday to have an upper and lower GI scope done. He is still having diarrhea even though he's only getting TPN and eats very little by mouth. I'm hoping we will have some answers after that scope as to what is going on in his stomach. Anton has moved holding french fries for years now he doesn't want to eat then just hold them. But today he finally tried one and he liked it!!! So proud of Anton with how far he has come with his texture issues since we have been here! Jason, Kenya, and Judah came up to see us tonight. Judah said the sweetest thing ever. He said "I'm going to name my EB kid" (can't remember the name he said). And I said "oh you're going to adopt a kid with EB" and without a second thought he said "ya!" I love how God has given our kids such a love for Anton that they don't see any of this as a burden (I'm glad they don't because it isn't at all!) but a joy. He literally wants to have a child with EB one day because of the joy that his brother brings our family. Both Kenya and Judah love Anton and have a bond with him that is so precious to watch! This is such a gift from God! A few people have asked if the transplant worked and if we have seen changes in Anton's skin so I wanted to answer both of those questions quickly (I plan on doing a post in the future with side by side pictures showing the difference before and after transplant). Did the transplant work? From a bone marrow transplant standpoint, yes. Anton is 100% engrafted with his donors cells meaning all of the cells his body is producing are his donors and not his. Has his skin changed? Yes. We started seeing changes in Anton's skin 7 days after transplant, which I know sounds crazy but you have to remember he was 100% engrafted by day 21( crazy fast, crazy exciting)!!! Before transplant all the way around Anton's neck was always torn up. We would get him in the morning and he would be stuck to his pillowcase because of wounds he had gotten through the night. We would have to slowly un-trap him from his pillowcase using coconut oil almost every morning. His pillowcase were always a bloody mess in the mornings from new wounds that had formed through the night. His shirts would always be stuck to him by the end of the day for the same reason as would his pants, and diapers. Every time you get him undressed or take his diaper off he yells "is anything stuck?" It is seriously the saddest thing ever. I am happy to say though that after transplant the wounds on Anton's neck and shoulders have completely closed and NOT reopen at all. He doesn't get stuck to his shirts, pants, diapers, or pillowcases anymore! His pillowcases are completely clean in the mornings. No blood at all! He hasn't gotten a new blister in probably a month, not one new blister at all! The transplant is not a cure and Anton will always have EB but his skin is sooo much tougher now. It even feels different. Before transplant it was almost translucent and felt fraigle (sounds strange I know). But now his skin feels like ours. We can rub his skin, slide clothes, or tubifast over it and nothing happens! Before transplant his skin would have slide right off. He does still get new wounds, in fact he is missing a ton of skin from his right side at the moment. It opened up maybe a week and a half ago but that has been his only new wound (besides the small on on his head) in probably the last two months. Anton's knee and his right side were his worst areas before transplant and they are still pretty bad (his knee was almost completely closed 21 days after transplant but it opened back up) but everything else seems to be so much tougher. Anton has wounds on each hand, each upper arm, his right side, his right knee, and a small wound on his head. Other than that his body just has skin! That may seem like a lot of wounds but that is nothing compared to the amount of wounds he had before transplant. Anton is on a high dose of steroids (they are weaning him off) so his wounds aren't healing as fast right now but I am pretty confident that once these close the only wounds he will keep getting will be on his right side and right knee because these are his chronic areas. We shall see of my theory is true or not. The doctor's gave me the go ahead to start using my essential oils on Anton again so I'm excited to see if they help some of those open wounds close back up. Anton was getting corneal abrasions several times a month before transplant. He hasn't gotten one at all since transplant!! And I don't put anything in his eyes at all to keep them lubricated. I was telling Dr. Tolar about this and he said that the eyes are the one place that bone marrow transplant doesn't go to but I'm not the only parent that has told him that their children didn't get abrasions after transplant. He said he couldn't explain it but he was happy it happened. Anton's feet were soook fraigle before transplant, we could grab his foot and it would blister up within a few minutes. Not they aren't wrapped at all and are wound and blister free! Anton would rub the skin off his nose at night about once a month to every other month. He hasn't had a wound on his nose at all since transplant. This is HUGE. You can rub the skin on his nose and it is attached now. Before you could literally move that top layer of skin around it was so loose. This isn't to say he isn't going to get anymore wounds on their ever but it is soooo much tougher now. Besides the spots that have wounds right now, I would say his skin is 80% tougher. I am very thankful that Anton had the bone marrow transplant and very thankful for the amazing results he has had. If you are debating on having your child get the transplant feel free to message me. It is such a hard choice but I think the EB community as a whole has a lot of fear about transplant based on past not current data. Base you decision on facts not fear. It isn't the right or best choice for everyone but it is worth looking into. I think it is so important that everyone knows (and Dr. Tolar says this over and over) the bone marrow transplant is NOT a cure. The goal of transplant is to stop the progression of the disease. Everything else is bonus. We've seen amazing results with Anton's skin and are very pleased with how everything has gone. It isn't an easy process and we have had minor complations here and there but its worth it to give Anton a change at a better quality of life. - July 22, 2015 at 09:56PM http://ift.tt/1r2lUi4

Tuesday, July 21, 2015

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Day +117 Anton's knee is hurting pretty bad and he isn't moving it anymore. He is getting dilaudid every 4 hours but still screams any time you move him around. His MRI came back clear yesterday showing no signs of infection! We just got back from getting his knee xrayed so we will see what that shows. The plan (I think) is to keep Anton in the hospital for awhile while they figure out what (if anything) is going on with his stomach. He will have an upper and lower scope done by GI soon. Dermatology, infectious disease, and the BMT team are all working together to figure out the best way to help Anton's knee. He is fine as long as I'm not picking him up. He did physical therapy like a champ today! Last night Prayers for Cole mom and Prayers For Abigail Updates mom, and I all hung out in the family lounge for a little bit. It was fun to connect with other EB mamas! Overall today has been a pretty good day. Anton was happy most of the day. - July 21, 2015 at 06:39PM http://ift.tt/1r2lUi4

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Monday, July 20, 2015

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My only real complaint about this hospital is their kitchen closes at 6:30pm and Anton is never hungry for dinner before they close. You would think I would remember to order him food before then but I never do. The dermatologist came in and we unwrapped Anton's leg so they could see his knee. He of course flipped out and was pretty upset until after they left. The second they left he calmed down and asked for mashed potatoes (it was 6:37 pm, kitchen closed). Our nurse was in here and she said let me see what I can do. She called the charge nurse who called his supervisor who was walking down the hall by the kitchen, she ran into the supervisor of the kitchen, told her that a very special little boy wanted some mashed potatoes and the kitchen supervisor personally went in there and made him mashed potatoes. So they may not be open as long as I want but they all went above and beyond to get our sweet boy some mashed potatoes! Love this hospital so much! via Help Anton http://ift.tt/1MlhuAu July 20, 2015 at 07:15PM

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I was able to go back with Anton and transfer him to the mri table, put his pulse ox, and oxygen mask on. Once he was all settled i headed to the waiting room. Everything went well and he is now napping peacefully in his room on the BMT floor (which I'm thankful for because he was not happy waking up from anesthesia). I'm not sure when we will get the results. Dermatology is going to come by in a bit to look at his knee and let us know what they think. I will keep y'all updated via Help Anton http://ift.tt/1fZzRxY July 20, 2015 at 04:25PM

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