On September 20, 2012 Our son, Colton, was born. We were expecting a healthy baby girl and during the whole pregnancy, everything was fine. The day came for the planned C-Section and everything was going well. During the procedure, we started to notice a change in the doctor and medical staff. They were no longer joking and we got the sense something was wrong. Shortly after delivery, we were told we were having a boy, but that he had some "complications". When we asked what the complications were, we were told they had no idea. Suddenly there were several more doctors and nurses that came in the delivery room, all huddled around our new baby boy. After several minutes, Colton was brought to us, wrapped in a blanket. We were told he needed to go to the NICU immediately, and given the chance to say goodbye. After a few kisses, Colton was wisked away. The doctors finished up taking care of Amber and had her transported to her recovery room.
For the first 12 hours, we did not get to see Colton very much. Every time I went to see him in the NICU, he was gone for more testing. No one could tell us for sure what was going on with him, only that he had some physical deformities and they needed to run tests on him. For 12 hours Amber and I(Michael), were nervous wrecks. Not only did we not know what was going on with Colton, but Amber had developed Pneumonia and was extremely ill. Eventually a doctor came in to Amber's room and told us Colton has a rare condition called Arthrogryposis Multiplex Congenita. He did his best to explain what it was and how Colton was doing. We don't remember much of that conversation as we were in shock from all the events of the day.
That evening, I was able to go and see Colton in the NICU. Colton was quietly sleeping and seemed to be a normal newborn. I was able to look at Colton for the first time and see the deformities for the first time. He looked so fragile and we were both afraid we were going to hurt him when we held him. Beyond the physical disability, Colton also had a massive Bilateral Double Hernia. The hospital staff told us that was somewhat common, and that most likely it would go away on its own.
After 2 days, Amber was finally able to see Colton. The emotions of her pneumonia, his physical conditions, and the sudden chaos of everything had taken its toll. Amber cried and was finally able to hold our beautiful child. 5 days after his birth, we took Colton home. We spent hours research and reading everything we could on Arthrogryposis. We had numerous doctor appointments the first few days after we left the hospital, with more and more tests being done on Colton. Weeks passed and the test results started coming back in. Although Colton did Arthrogryposis, he was rather healthy. Colton did not have a lot of problems with his internal organs that a lot of Arthrogryposis children have. However, Colton had one other severe condition, Amioplasia. Genetic tests showed that Colton had a genetic abnormality and that he has no use of his arms.
For the first several months, we took Colton to see every doctor that we thought might be able to help Colton. We say doctors in Indiana, Kentucky and Illiniois. Doctor after doctor told us the same thing, Colton would never walk and never be able to use his arms. The continual bad news was disheartening and depressing. We continued to ask ourselves what we did for Colton to deserve this and did we do something to cause it. We reached out through social media, trying to connect with other families of children with Arthrogryposis. We slowly started to feel more "normal" and that we are not at fault over his condition. We were eventually told about a very special doctor at the Shriners Hospital of Philadelphia, Dr. Harold Van Bosse. Dr. Van Bosse works with a lot of children with Arthrogryposis, and every family either goes to him or wants to go to him. We immediately called and made an initial appointment, and was told that our appointment was 10 months away! Talk about a shock! We say that as a sign that if the wait to get in is that long, that Dr. Van Bosse is the one doctor to help!
After 10 long months, we finally got in to see Dr. Van Bosse. He immediately expressed his belief that Colton WILL walk one day, it was just going to take some time. He said he expects all of "his kids" to walk and will do whatever it takes to make it happen. We were sold! That day we began the journey to get Colton walking!
We travel routinely to Philadelphia, every month or two and stay for several days. Colton has had 9 surgeries to date, with another coming up in the Spring of 2016 and a major hip reconstruction surgery in September 2016. Colton has endured weeks and weeks of castings on his legs and two long months in a Spica cast. He still requires surgery on his feet and ankles, knees and hips, and will continue to need surgery periodically throughout his life as he grows.
At this point in time, Colton's legs look almost normal. He has braces that he wears 24 hours a day to help stabilize his legs. He is able to stand on his own, but needs assistance with balance. He has been able to walk with lots of assistance, still not being able to balance on his own.
As for Colton's arms, he still has not been able to use them like a normal child. Colton has learned to "swing" them using his trunk muscles. He has regained minimal use of 2 fingers on each hand, being able to push buttons or "wedge" small items between those fingers.
Colton recently started preschool and is loving every minute of it. He enjoys being around other kids and seeing them play. He still prefers playing with adults, as they understand his needs and will help him more than other children.
Although his progress is the result of his hard work and those of Amber, who quit her job to care for him full time, we would not have gotten to where we were without social media. Being able to connect with other families of children with Arthrogryposis helped us connect with Dr. Van Bosse. It also helped us to realize that we were not alone and there are others like Colton.
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