At birth Lil Louie weighed 8 lbs, 13 ounces which evidently is not the norm for a typical child with Arthrogryposis. We did not know of his condition until he was born, but because he was in the breached position I had to give birth to him via C-section. Despite having had a 3D ultrasound, and multiple regular ultrasounds his condition was undetected in utero, we were all unprepared for his birth.
When he was born, I had no idea anything was wrong because he was crying like an angry baby. I still remember the sense of relief I felt because he had GREAT lungs and that meant all was okay. Two weeks later he was diagnosed in St. Louis: Arthrogryposis Multiplex Congenita Amyoplasia. All four of Lil Louie's limbs are affected. Through the help of his OT, PT, surgeons, and parents he's come a long way. With aquatherapy he was able to learn how to walk by the age 2 1/2. He did great at preschool and kindergarten. And in May he wrapped up 2nd grade and is looking forward to 3rd grade.
Yes everyone knows he has Arthrogryposis, everyone knows his arms don't work very well and it is easy to throw him off balance. But Lil Louie is one of the toughest little dudes on this planet. It was so frustrating that no one locally knew anything about this condition but he figured it out and he continues to figure it out because of his tenacity. That is one of the common characteristics that I have observed with others with Arthrogryposis. They seem to have this unwavering drive and tenacity to do what everyone else does. From his perspective the way he moves, eats, bathes, functions is perfectly normal. I hope he always feels that way.
He loves the Colorado Avalanches, Dallas Cowboys and the Arizona Diamondbacks. At the end of the day, he still may need help getting into and out of his clothes but he is 100% testosterone.
What is the best part about being a member of AMCSI? Not being alone. When Little Louie was first born, no one knew what his condition really was. We live in a small town, and the medical staff here had no idea what his condition was. My family provided an overwhelming amount of emotional support, but I had no one who had walked my path. I remember looking online and really did not find anything. It wasn't until his one-year birthday was approaching that I found the online forum: amcsupport.org. I remember I used to spend so much time on there because I finally had people who knew what I had gone through, was going through and will go through. I am so glad that new parents or pregnant parents never had to experience that sense of isolation that I felt when my son was born.
What is the biggest challenge about living with or with someone with arthrogryposis? I really try to treat Little Louie no different than any of my other children. With that said, the biggest challenge is letting him struggle until he can figure it out. He needs to live an independent life, and I cannot hinder his progress by doing for him.
Is there a stereotype about living with a disability or with someone with a disability that you wish others would realize isn't true? A person with a disability does not need pity. That is probably one of the most annoying things. Do not pity my child and do not pity me. He is a gift, just like my other children; he is a brat, just like my other children.
Quick! List the first three fun facts about your AMCer that pop into your head...
1. He has the best sense of humor. Need a laugh? Hang with Little Louie, he is quite the comedian.
2. He does a pretty good imitation of my mom snoring.
3. He is good at board games, but you have to watch him because he is sneaky!
Complete the following sentence: Arthrogryposis is... just a diagnosis. It is not a label or an excuse NOT to do something, if anything it is a reason to DO.