TRITON'S STORY
Triton Ramseier was born on October 6, 2002 in Encinitas, CA. We knew at about 31 weeks that he would be born with club feet, but were not aware of any other complications until the morning he was born. His right side had a slight droop and he was having difficulty sucking and swallowing. It wasn’t until 2 days later that we got the diagnosis of Moebius. Looking back, it was a good thing to have such an early diagnosis, but I don’t think it made it any easier to swallow. He spent approximately 3 weeks in the NICU for the feeding issues. We were urged to place a g-tube and a fundoplacation. We did do the g-tube, but decided against the permanent, irreversible procedure of the fundo. I am so glad we did so. That was our first glimpse into the idea that doctors do not always know what is best. There would be several more instances of that in the next few months.
We got to bring him home on Halloween. We got him a superman costume since that is what he had been for the last few weeks of poking and prodding in his young life. We left with the advice that he most likely would never eat independently or without a g-tube. With much practice and hard work, we had the g-tube removed on November, 24 2003. He has a nice scar to show everyone later in life to prove how strong and brave he really is! I often want to take him back into the NICU and have a show and tell hour while I demonstrate how this child, who “will most likely never eat orally” chows down on a few French fries, carrots or whatever else he loves to eat these days! We were also told he would “HAVE” to have the eye surgery by 3 months of age. He has yet to have any eye surgery to date! He can focus on anything and grabs any object without difficulty. In fact he very rarely even crosses his eyes at all.
With the club feet corrected and g-tube removed things sure seemed a lot better and brighter than the picture that was painted at the hospital in his first few days of life. He has had some motor delays, but is currently close to walking at 20 months and loves to climb all over his brother Phoenix. A few more months and the motor delays will be all but a memory. All in all we are a strong boy after all this time! He gives the biggest hugs and laughs out loud with a contagious giggle that makes everyone’s heart feel warm. Yes, it is true he may never smile, but I know when he is smiling on the inside. I know he has a rough road ahead of him, but it is my goal to make sure he has the healthiest self esteem to arm himself when he has difficult times. When he has those hard days I want him to remember that his mom, dad and brother have enough love to heal any wound!!
It is my hope that a cure will be discovered, but until then a good amount of therapy, love and attention will have to do. So, to all the new parents that have been blessed with a special angel diagnosed with Moebius please remember that Doctor’s DO NOT always know everything. If they tell you your child cannot or might not be able to do something, try it anyways. Moebius is one of those rare things that is best learned about by discussing it with others who are going through it as well. Compare notes and try anything even if it seems a little crazy! It might work and it might not, but you will never know unless you give it a try. Every child with Moebius is affected to differing degrees and that makes it difficult to generalize across the spectrum. However, take it from our experience, you can defy the odds and prove doctor after doctor wrong!