Wednesday, July 22, 2015

Facebook update from Help Anton

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

No comments: