Saturday, December 20, 2014

Facebook update [pic] from Help Anton



Crazy story... Anton got discharged from the hospital today I signed the paperwork then the last step was to take out his IV so we could head home. I took out his IV and the place where the IV went into his arm looks infected so they didn't let us go home after all. We are going to stay at least one more day so they can make sure his arm doesn't get worse. Anton's leg is hurting a little less so at least that's a bit of good news. Hopefully we will be out of here soon. via Help Anton http://ift.tt/13oYu0b December 20, 2014 at 04:30PM

Wednesday, December 17, 2014

Facebook update [pic] from Help Anton



Anton went to the hospital yesterday for 2 blood transfusions and they admitted him that night. His leg hurts a ton and he won't move it. It isn't broken so they did an mri today. His leg and hip look great besides a little fluid in his knee. They are going to keep him in the hospital for a few days to give him some iv antibiotics. I have been praising God and so overwhelmed with gratitude because of the AMAZING doctors and nurses Anton has caring for him. Every staff member has gone above and beyond to make sure Anton has everything he needed. Thank you, thank you, thank you, to all the staff who has taken care of Anton. You guys are the BEST!!! Overall he is doing great besides the leg pain. I will try to keep y'all updated! via Help Anton http://ift.tt/1wH80Hn December 17, 2014 at 11:10PM

Monday, December 15, 2014

Facebook update [pic] from Help Anton



Wynona Phillips Photography love this one! via Help Anton http://ift.tt/1A0xmAY December 15, 2014 at 09:34PM

Facebook update [pic] from Help Anton



Thank you Wynona Phillips Photography you did an amazing job on these pictures! via Help Anton http://ift.tt/1zq8h1f December 15, 2014 at 09:30PM

Facebook update [pic] from Help Anton



This little cutie has the BEST pediatrician and nurses!!! They let me come get culture kits so I could culture some of Anton's wounds at home instead of having to being him to the office and expose him to who knows what. It truly means the world to me that they always go above and beyond to care for Anton. via Help Anton http://ift.tt/1BRdR03 December 15, 2014 at 08:19PM

Wednesday, December 10, 2014

Facebook update [pic] from Help Anton



via Help Anton http://ift.tt/1zS9ZIa December 10, 2014 at 10:42PM

Facebook update [pic] from Help Anton



I have some SUPER exciting news!!! Anton has gained 3.2 pounds since starting Real Food Blends 3 weeks ago!!! He is now 28.2 pounds which is the most he has ever weighed and we have finally gotten past 25 pounds (which he was stuck at for about a year). We are super excited and are Praising God that Anton is getting bigger! via Help Anton http://ift.tt/1unmOXd December 10, 2014 at 04:47PM

Friday, December 5, 2014

Facebook update [pic] from Help Anton



Update on Anton and on the bone marrow transplant... As Anton is getting older his skin is breaking down in more places. I keep having to add more and more bandages to make sure the least amount of skin possible is exposed. He has had a hard few days... he has more open wounds than normal and has been in more pain than normal. His nose seems to be taking a lot longer to heal and bleeding more than any other time he has had a wound on it. If Anton cries, or moves his nose too much it will just start bleeding (from the wound on the top of his nose). I am thankful to have to opportunity to move forward with the bone marrow transplant and I am praying it will help Anton's skin to get much tougher! We should be moving to MN in the next 6 to 8 weeks. We are guessing it will be sometime in February. They have found several bone marrow matches for Anton. The team in MN is working with Be The Match to get one locked down! We are very very thankful that Anton has so many matches!!! That isn't the case for everyone though so if you haven't registered with http://ift.tt/XAAXDm please consider it. You could help save someones life! Thanks for loving our family and our sweet boy! #healeb #causethewave #irefuseeb via Help Anton http://ift.tt/1FWMLnI December 04, 2014 at 11:51PM

Wednesday, December 3, 2014

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I have been meaning to post this picture for several weeks. Thank you so much to our special friend that sent this package to Anton! He was so excited to open the box and he LOVED the card! via Help Anton http://ift.tt/1yPPwnI December 03, 2014 at 04:04PM

Wednesday, November 26, 2014

Facebook update [pic] from Help Anton



I have had a few people ask me why we are doing the bone marrow transplant now instead of waiting for the gene therapy that Dr. Tolar is working on. I thought it was a great question so I'm going to answer it here just in case some of you were wondering the same thing or were just wondering why we are moving forward with the Bone Marrow Transplant. We have known about the Bone Marrow Transplant pretty much since we found about about Anton. We have followed Dr. Tolar's work closely and we were very hopeful that at some point Anton would get the Bone Marrow Transplant done. The first two years Anton was home we just didn't think the risk of getting the Bone Marrow Transplant done outweighed the risk of not doing it. He seemed pretty healthy (although he was hospitalized several times for infections). He didn't seem like he was in a lot of pain, and overall he had a great quality of life. As more time has gone on I have have seen countless children and adults lose their battle with EB. Most of the people who have passed away these past few years have Anton's type of EB and most of the people who have passed away have died before they turned 20. The harsh reality is Anton most likely won't live to see his 20th birthday unless we do something to intervene. During the past 6 months or so we have noticed Anton is in more pain than not. He is still happy and joyful, we can just tell that his EB is affecting his daily life. It seems like his quality of life is not what is could/use to be. Anton had a normal echo done on his heart in October of 2013 then in July of 2014 his echo showed that the left ventricle of his heart was dilating. At this point his heart is still functioning normally but I talked to the cardiologist at the patient care conference and he said almost always in patients with RDEB once the left ventricle starts dilating it will eventually turn into cardiomyopathy. (Cardiomyopathy is a weakening of the heart muscle or another problem with the heart muscle. It often occurs when the heart cannot pump as well as it should, or with other heart function problems. Most patients with cardiomyopathy have heart failure, "google") If Anton loses heart function he will no longer qualify for the Bone Marrow Transplant. Dr. Tolar spoke at the Patient Care Conference we went to this year and it was so amazing to see how far his research has come. It is FAR less risky than it was 2 years ago. It is hard to know how much Anton needs this when you see mostly happy posts on his facebook page. The harsh reality is Anton's eye lid gets stuck to his eye ball at night and when he opens his eyes it literally tears the top layer of his eye, he has a large wound on his knee that has NEVER healed in the almost three years he has been home, he is terrified to poop because the one time his stool was hard it tore the lining of his bottom causing extreme pain, he gets blisters in his throat that pop which makes him throw up blood, his fingers are fused together and he has lost almost all the function in his right hand because his thumb is fusing to his hand, bath time is painful instead of fun, he can't scratch his face at night without tearing all the skin off his nose. This sweet boy suffers so much and if we can help relieve just a little bit of his suffering we want to. Knowing that if Anton loses heart function he will won't be able to have the BMT done, seeing how much pain he has been in, and knowing that the Bone Marrow Transplant could at the very least give him a better quality of life we felt like it was the best option for Anton to move forward with the transplant. We are in close contact with several people who have had the transplant done and we are very hopeful for what the future will hold for Anton post transplant. Dr. Tolar is an amazing doctor and he truly cares about people with EB and their families and I know that he won't stop fighting for a cure. We are thankful that God has allowed us to move forward with the Bone Marrow Transplant. We are praying for God's will in all of this and praying that God will be glorified through Anton's life. For from him and through him and to him are all things. To him be glory forever. Amen. Romans 11:36 #cureeb #irefuseeb #bmt via Help Anton http://ift.tt/1xUgSKc November 26, 2014 at 05:16PM