Over the past few months, the e-NABLE group has been able to learn more about upper limb differences from some wonderful parents who run websites and Facebook pages that share their own experiences and offers support to other families who find themselves facing the same challenges.
One of these parents is Jen Reeves from Born Just Right – who is also now an e-NABLE Community member and supporter!
We asked a few questions and she shared her thoughts on being a parent of a child with an upper limb difference, the challenges that go along with finding support systems, various prosthetic devices tried and what she hopes to see from the e-NABLE group in the future.
Q: You are the heart behind “Born Just Right” – a website and Facebook group that offers support and information for parents and children who have been born with limb differences as well as documenting your daughter’s experiences as a child born missing part of her left arm.
How did you get started blogging about your experiences and growing such a wonderful page full of resources for families facing the same challenges?
A: I started Born Just Right before we even knew Jordan was arriving with a limb difference. At first, it was just a second parenting blog since I didn’t think it was fair to Jordan’s brother if I added her story to his website.
When she was born – my focus shifted immediately. I had a tiny baby with one small arm and no resources. I set out to tell our story and find people who could help us along the way. The longer I experienced raising Jordan and being her advocate, the more I realized I wasn’t just documenting our story, I was gathering information to help empower other parents around the World. I was explaining how it is possible to raise a child born with a difference with a positive attitude. I realized our perspective and always-trying-something-new tone …helps so many others.
Q: When Jordan was born, was there any kind of support for your family? Did you try to face this new challenge on your own or were you able to find the kind of information that you now provide to your followers?
A: My family supported us but none of us knew what kind of resources Jordan would need. I searched high and low and documented the experience along the way. My hope is that no parent is ever left without support or resources if they have a child born with a limb difference.
Q: Has Jordan ever used a prosthetic device before? Is so – what kind and how did they work? Were they expensive?
A: Jordan started using prosthetics when she was 9 months old. Along with a limb difference, she had low trunk and neck tone. Prosthetics were one way to offer her body additional reasons to move her muscles.
Her first prosthetic arm was a myoelectric – where tiny sensors recognize when Jordan moves a muscle and the hand opens and closes. It’s pretty heavy and it isn’t very reliable when it comes to most certainly opening and closing when she wanted it to.
The first arm cost more than any car I’ve owned and we have to pay a 20 percent co-pay because it was out of network. (We had visited Shriners for a prosthetic but they wouldn’t build a myoelectric – so I went elsewhere.)
Jordan’s second myo wasn’t much cheaper even though a few parts were reused. After that arm, Jordan was angry at the myo and it’s lack of responses. She wanted something that always worked and I just wanted her to use anything to help her build more balance and strength in her body’s core. So we started body powered arms that use a figure 8 harness around her shoulders to get the elbow to open and close. (She has a left humerus bone but no elbow, forearm, wrist or hand.)
We’ve stuck with body powered and paid 20 percent out of pocket. Only recently, I changed jobs and the insurance company paid almost the entire bill for the first time. It’s a big and exciting change.
Q: If (WHEN!) the e-NABLE community comes out with a design that may work for Jordan – would you be interested in testing the design and giving feedback?
A: We would absolutely love the chance to try out an above the elbow e-NABLE design. Jordan was bouncing around the house in excitement when she watched the video of Derek using his new prosthetic hand for the first time!
Q: How did you hear about e-NABLE? What were your original thoughts?
A: I first heard about e-NABLE through Google+ because I absolutely love the 3d printing movement in every different sector of the World it touches. When I realized it was growing into an open source community, it made me so happy! I love the social web and to see it put to use in such a positive light, I just wanted to hug someone!
Q: At times, there have been parents who have asked us if we are sending kids the wrong message by making 3D printed prosthetic hands for them – that in doing so, we are telling them that they are not perfect just the way they are. What are your thoughts on this?
A: Using prosthetics gives Jordan a reason to user her body in a more balanced way. The more centered she is in her movements, the more balanced and healthy her body. Any time she wears a prosthetic, she’s giving her body time to relax and balance itself out. The is a wonderful way to help prevent long term strain and stress on her body. Even wearing a prosthetic for an hour is enough to give her body reasons to build balance and muscle and help her understand what balance feels like. No hand is ever a “Fix.” It’s a “Helper.” That’s why we call all prosthetics a “Helper arm” or a “Helper leg.”
Q: What would you like to see happen with the e-NABLE community? Do you have other thoughts and ideas that would help the e-NABLE designers create devices that would be more useful?
A: I would absolutely love to see expansion of the 3d printing centers where someone in need can walk up to a scanner, turn in his or her measurements and wait to get connected to the nearest 3d printer who can work with them.
The kind of devices I’d like to see are prosthetics that may not “look” like a hand – but that meet needs. Jordan has prosthetics that help her with push ups, biking, kayaking and even when she was younger, a hook that helped her hand for the monkey bars.
It would also be awesome if I could help the e-NABLE community match up with prosthetics experts to see if there are additional pieces of information that can help develop prosthetics that help really meet the physiology of the body.
Q: Do you have anything you would like to add?
A: I am thrilled to connect with the e-NABLE community and I hope we can continue to help spread the word of your efforts through Born Just Right and other limb difference groups!
Thank you Jen for sharing your thoughts and your support of the e-NABLE community and our continued global effort to make as many different designs to help as many different people as possible!
Our designers are working on the elbow driven arm right now – but as soon as we master that design – we will start working on the Jordan arm!
If you are a parent with a child who has an upper limb difference – please visit the Born Just Right website and Facebook pages for support, resources and new friendships!
If you are interested in making hands or helping the e-NABLE Community – please join our Google+ group! We would love to have you!