Jordan’s used prosthetics for a long time. We started when she was about six months old. She rolled over for the first time in a prosthetic office room. But the first helper arm didn’t last long and I knew we needed to expand our search for someone who could be creative for Jordan’s needs.
At first, I didn’t really know what I wanted for Jordan and I just listened to what my physical and occupational therapists told me Jordan needed. We went with a myoeletric arm. That’s a kind of prosthetic that is muscle stimulated. When Jordan moved her arm, the hand was supposed to open. Her myo was frozen in a 90 degree angle to help with clapping and holding things. It was also very heavy and required a strap wrapped around her shoulders whenever we wore it.
We also had a spare passive arm – a prosthetic that is frozen in place, much lighter in weight… And when Jordan was really little, she liked chewing on it.
The first year with the myo was really helpful. Jordan’s torso and neck strength were very low. We don’t know why. But the myo helped her build muscles that she wouldn’t have been able to build any other way. She actually hadn’t been able to go from laying down to sitting up until a few months after she got the helper arm.
But it was inconsistent. The hand didn’t open and close consistently. At first I thought it was just because Jordan was a baby. Maybe it was because she was growing fast and the sensor point wasn’t hitting the right part of her arm. I just wasn’t sure. So we went back and built a second myoelectric arm.
I was hopeful because Jordan was really understanding what her myo was supposed to be able to do. She started holding things with the hand. She seemed really interested in working on using it. But during our second build, I didn’t feel right. I didn’t think things were being done the way I wanted. I questioned the way it was built… but I didn’t really know what I could get instead. That year Jordan spent a lot of time yelling at her arm. To us, it’s supposed to be a helpful tool. Instead she was angry. She’d yell at it to open when she wanted it to open. She’d yell at it to close when it would open at strange times. My gut feeling I had when we first built it continued. I didn’t get what I wanted… and I wasn’t sure what to do next.
That’s when I met with some local prosthetics experts in town. They showed me different types of body powered prosthetics. I learned about different types of “hands” and prosthetic structures. I had no idea the various options beyond myoelectric. Around the same time, I started asking around the country to find a new prosthetist. I spoke with pediatric occupational therapists all over the country. I explained how I live in the middle of the country and I really can go anywhere. Two names stood out – one person in Chicago and one person in Atlanta. I decided to call the person in Chicago since I can drive there and it happens to be one of my favorite cities in the world.
I spoke with David Rotter who immediately asked me to stop thinking about myoelectrics. It surprised me after hearing from so many people how I should go to myos first. But he explained how he thinks kids need to have success with prosthetics and if it wasn’t working all the time for Jordan, she would want to quit using before really learning the merits of helper arms. I told him I was willing to be open minded if he was willing to be creative with Jordan’s needs. We agreed and instantly we formed a solid partnership. And we moved forward to build a utilitarian prosthetic.
Jordan was quickly a fan of “Mr. David” as well. They worked well together and Jordan appreciated tools that work on command. It was an obvious understanding that we were building helpers… nothing that replaces the wonderful person she is. It’s just extra help.
So for the last 19 months, she’s been able to work with the same helper arm. It’s an extention that attaches to a sleeve. No elbow but there are three different hands. “Bouncy hand” that is passive and has a little bounce. “Open close” hand that has a strap that goes around her shoulders that lets her open and close the hook. (You can see her wearing it in this picture of her with David.) She also has “bike hand” that has been awesome. It’s her favorite because it helps her hold onto a bike handle.
Tomorrow we head back to work with Mr. David again. This time around, we’re adding an elbow. I’m excited and nervous. The ability to wear the shoulder strap or not wear the shoulder strap has really opened Jordan up to wearing her helper arm more. She asks for it when she rides a bike. I suggest it when we do other tasks and she’s actually willing without protest. She’s fabulous when working with her occupational therapist.
So… after 19 months of a helper arm that worked, we’re returning to that nervous, hopeful phase. I’m hopeful the next arm will be more help. It will give her more mobility and ability to work on bimanual tasks. I hope she’ll be able to continue to happily ride her bike. I hope she’ll want to try even more challenges. I hope she’ll be proud and wear it and explore with it.
Of course I’ll be here documenting it all. I know there are many new moms on Sammy’s Friends who are asking a lot of questions about prosthetics. I hope I’ll be able to offer one experience. It’s different for everyone. Hopefully our next adventure will be worth it for Miss Jordan and our family.