This page was created in honor of my youngest child, Eldon Self. I am raising a very special child that has autism as well as many other medical complications. His biggest issues are he has a mitochondrial disorder, adrenal insufficiency, chronic intestinal pseudo obstruction, a prolonged QT, blood clots, autonomic dysfunction, intestinal failure, Baraister-Winter Syndrome and asthma. I am doing m
y best to help him be all that he can be. Eldon has autism and so many other medical challenges. His other conditions are asthma, hearing loss and requires hearing aids, wears glasses, has an ileostomy, and a mucous fistula, cecostomy, autism, has a central line he is entire little belly is covered with stuff to try to help him. After a lot of testing he was also labeled mild mental retardation he gets TPN through his central line and he also has a g tube. He has had numerous surgeries, procedures and hospital stays during his short life. Doctors say everything about Eldon is a big puzzle. He loves to put puzzles together and to us he is a "puzzle master" who has worked his way up to being able to do a 300 piece puzzle in a matter of hours all by himself. It is amazing to just sit and watch him put a puzzle together. He does not look at the picture, he just looks at the shapes and knows where to put the pieces. There is an edit to the part about putting puzzles together. He is slowly loosing some of these abilities and is no longer able to put small puzzles together any longer which is very hard to see. Eldon has spent most of his school age years being on home bound. The doctors say that he is too sick to go to school. For the past 4 years I have participated in something called Surfers Healing. It is awesome, Izzy and all his crew is totally awesome. I have never had so much fun in my life. I did not get to do it this year because I was in the hospital. But I look forward to surfing next year. He is no longer able to participate in Surfers Healing as he has lost his ability to walk and stand. The latest news is that his last option out there to help him would be a bowel transplant. They say that this has its own set of complications to consider as well. They say for now to keep him comfortable and let him enjoy his life while he can. And that is what I intend on doing. He went on his Make a Wish trip Jan 2015 and had the most amazing time. It was the most awesome experience. We are now in the process of going through the steps to get him put on the transplant list. They would like to remove half of his stomach and then transplant a small and large bowel. He would be the first child to have both transplanted at Duke. We have had several setbacks during this process. His last few genetic tests have come back showing mitochondrial disorder. That is not very good news in terms of getting a transplant. It is taking a lot to try to process all of this. Eldon needs a miracle in his life. I love him so much and do not know what I would do without him.