Monday, May 11, 2015

Facebook update from Help Anton

Day +46 Today was a great day! Do you guys remember me telling y'all about Anton freaking out when we first got here and passing out all the time? Remember I was telling y'all there was a team of people who were going to work with him to help him deal with his fears and help him learn how to calm himself down? Well Ms. Megan is on the team with Intergrated Health and she has been such a great part of our BMT journey. She has taught Anton how to breath with the breathing ball, how to distract himself if he gets freaked out, and she is great at helping him calm down if he is having a hard day. Now if something is stressing Anton out of his is afraid he will tell me to page Ms. Megan. :)We are very thankful to have Ms. Megan on our BMT journey and enjoyed our visit from her today. Anton is normally covered in bandages that protect his skin and even with those bandages he would still get wounds. I wasn't planning on using less bandages any time soon but it was the easiest thing to do since we had to do steroid cream so often. For the past 24 hours Anton has only had bandages covering his open wounds and tubifast over that. Tubifast is kinda like a sock that goes over his arms, legs, and chest. When you see pictures of Anton it might look like he is still all bandaged up because he has always worn tubifast but he isn't! Anton has been pretty much bandage free (besides the ones covering open wounds) for the past 24 hours and he has NO new wounds or blisters. In fact he had nothing covering his feet today besides socks and skidders (they are like a slipper/sock). He walked a ton with his gait trainer (during physical therapy) and has not one new blister or and missing skin from it. Normally with a totally bandaged foot he would have gotten a blister from walking but he literally had nothing! I am seriously blown away and praising God at how tough Anton's skin is. I am seeing a HUGE difference in his skin and it fills my heart with praise! I am so thankful for the team of doctors that have worked so hard over the past several years to come up with this option for EB and have worked so hard to make it better. I was telling Dr. Wagner today how thankful I was for all the time and heartache he has put into our kiddos with EB and I started crying as I told him how much this transplant has already changed Anton's life. I am always emailing Dr. Tolar pictures and updates and telling him how thankful we are for him. These doctors are passionate about finding a cure for EB and I am so thankful that Anton is getting to be a part of this process! I'm sure we will still have hard days but we are so enjoying these easy ones! Jason, Kenya, and Judah came up and spent a few hours with us which we loved. We had a jam session, ate Subway, and watched Teenage Mutant Ninja Turtles together. Today was a great day! - May 11, 2015 at 11:42PM

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