Advice I Should Share
In the last couple of years, I've talked to more and more parents about the process of getting a helper arm for his or her child. I realize I've blogged about why we use prosthetics before. But I haven't given details about how we found our prosthetist. It was a trial and error process.
First, when Jordan was little, we visited the closest Shriner's Clinic - ours happens to be in St. Louis. You need to apply for admission before you can make an appointment. Just call up your closest clinic or download the forms from the Shriners Hospitals website. You need a doctor's referral when you turn in the paperwork. Approval doesn't take too much time, but you can expect at least a month wait.
I took Jordan to a clinic day at the St. Louis Shriners Hospital when she was five months old. By that point, I had found pediatric occupational and physical therapists who I trusted and had spoken to them about a plan of attack for Jordan's care. They both recommended I work on getting her a myoelectric prosthetic to help her learn the thought process of body-stimulated electronic prosthetics and help her build extra strength from the weight of the arm. So by the time I went to Jordan's first (and at this point only) Shriners appointment, I decided to go elsewhere for a prosthetic when our clinic said they would not even consider a myo for Jordan. I probably should have asked more questions. I probably should have looked at the reasoning behind not offering myoelectrics.
So I started searching for a place that built myoelectrics for children. That was my focus. I didn't even think about research, associations or talking to experts across the country. So I went with a company that built Jordan's first helper arm. (I documented the experience on this blog. You can visit it here.) They were incredibly kind and supportive and Jordan got her first helper arm after five intense days. It did wonderful things for her. She got strong... Much stronger than before. She actually was unable to sit up by herself until after a couple of weeks of wearing her helper arm. The muscles she built gave her the core strength to sit up. I was so proud.
It was a year of just getting Jordan used to the idea of having a helper arm. She wasn't walking yet... But she was really fast at scooting around on her butt. She could do that with or without her helper arm on.
When she grew out of her first helper arm, I thought about going elsewhere for her next arm. I hadn't really heard from the company that built Jordan's helper arm, but I thought we needed to get her another one through them. I still had confidence they knew what was going on. At this point, the sensor on Jordan's helper didn't react properly... And we weren't sure if it ever really worked the right way. I wasn't that concerned during her first year with a myo because it helped her gain so much strength. She was getting more aware with her helper arm so I thought we needed a little different design for her second arm. But when I returned to the company, we got the same thing - using some of the same parts from her first arm. I didn't think that was a big problem, until parts started breaking.
I should have raised more concerns while I was there. I should have been more of an advocate for Jordan. But I went with the flow and let the company build the arm the way they wanted to. I didn't really spend any time learning about the parts of prosthetics. I didn't really know the parts and options. I should have researched more and asked more questions. (You can see a few blog posts about the making of her second prosthetic - but the videos are offline right now.)
I documented the whole prosthetic process leading up to Jordan's third prosthetic on this website by clicking here (you can read about her fourth here). But there's one thing I didn't mention that I realize I should offer as advice. When I was searching for our current prosthetist, I not only called all over the place to get the best recommendations, I also learned about the Association of Children's Prosthetic-Orthotic Clinics. I should have made sure I was affiliated with one the entire time. This is a group that is keeping up with research. They talk to each other and share ideas. There's a yearly conference. I have to say, knowing there are other people working together for our kids is meaningful.
I know so many families who are having great success working with Shriners. I feel very lucky to work with David Rotter at Scheck and Siress in Chicago. "Mr. David" (which is the name Jordan has given him) is affiliated with the ACPOC-approved Shriner's Clinic in Chicago.
If I can offer any advice, it is to work with someone who you feel comfortable with. But if you aren't getting what you want from your prosthetist, you need to move to another person or company.