I 'met' R through twitter and was intrigued by his story of adapting to O.I. in a totally unconventional manner! The most interesting part of R's story is how he approaches his own son's medical care based on his own experiences.
I'm stubborn. All my life, I have refused to let OI Type I beat me. I have Type I OI, as do my four siblings, their kids, and their grandchildren. It all started with my mom. 18 people in all, with three more in the womb that haven't been tested yet.
I played sports, I've trained in martial arts for 30 years, and I've done some pretty insane things that make my doctors want to slap the stupid out of me as they're casting my latest fracture. My mom was always the worrier. My dad made a career out of the Marine Corps and while he would worry as well, there's part of me that deep down thinks he's proud I did what I could to adapt, improvise, and overcome. If you count fingers, toes, and ribs, I've had over 30 broken bones in my life. I've had my right ankle, my right hand, and my nose reconstructed. Considering everything I've done to myself, this number is shockingly low. What's even more shocking is I have to give credit to my martial arts training. Sure, most of those finger, toe, and rib fractures were because of it, but it taught me how to fall. As we can all attest to, falling is one of the scariest things those of us with OI can do. One doctor speculated that I probably have had a lot more hairline fractures but the pain tolerance I've built up has "hidden" them from me. It's quite possible.
I never fully understood what I was putting my parents through until I had a child of my own. When my son was four months old, he ended up in the hospital with four broken bones: right tibia, left femur, and two ribs on the left side. Rather than do any kind of surgery they put him into a wheaton-pavlik harness while he healed. Shortly before his second birthday, he broke his left femur again when he slipped and fell on the kitchen tile. That time, they opted to put a removable rod into his leg to help set it right. The day after he got the rod removed, he slipped and fell again and broke his right tibia for the second time. He's five and a half now and hasn't had any more fractures since. Despite the four leg fractures, he's growing pretty tall for a kid his age.
I never fully understood what I was putting my parents through until I had a child of my own. When my son was four months old, he ended up in the hospital with four broken bones: right tibia, left femur, and two ribs on the left side. Rather than do any kind of surgery they put him into a wheaton-pavlik harness while he healed. Shortly before his second birthday, he broke his left femur again when he slipped and fell on the kitchen tile. That time, they opted to put a removable rod into his leg to help set it right. The day after he got the rod removed, he slipped and fell again and broke his right tibia for the second time. He's five and a half now and hasn't had any more fractures since. Despite the four leg fractures, he's growing pretty tall for a kid his age.
I’ve been putting some serious thoughts into whether or not I train my son and at what age I start him at. As a parent, I’m worried sick that he’ll get hurt and then I’ll feel horrible for being responsible for it. As someone that’s been teaching people for years, I’m pretty sure that I can create a program suited for him. I started training when I was six and he turns six in September. In the coming months, I plan on talking with his doctor about it. Maybe there’s some exam schedule we can run along with it. There's part of me that worries that it'll just lead to more leg fractures in the future, but all I can do is provide the understanding and support for what he's going through.
