This morning at breakfast, Jordan discovered another fun thing she can do with her helper arm:

You know the feeling… when you start to realize all the things you need to get done and all the things your kids need… and it starts piling up and all you want to do is crawl into bed and take a nap because that just seems much easier?

I had one of those moments while we were exploring how Jordan’s new helper arm works… and how the HECK am I going to make sure she uses it well?

Here’s the deal. Her new arm has a lot more potential.

Jordan has the potential to learn how to manage bending the elbow and locking it with different movements of her shoulder. But first she will use the little blue wire in the front of the upper arm to lock the elbow in place. She can bend it with her harness, lock it with her hand and then she can open and close the hand when the elbow is locked. When her prosthetist, David Rotter, was fitting her for the harness, he started encouraging Jordan to work on different upper arm rotations. And I had no idea what he was talking about. There are functions of an arm that I never really understood or knew and I realized at that moment that I need to know more. I need to make sure she’s getting the right occupational therapy services. I want to help her succeed and use this tool in the best way possible.

I mentioned my concerns to David… He seems to be so knowledgeable about the motions and mastery needed with prosthetics, but I worry my OT doesn’t have enough experience. He mentioned there aren’t many experienced OTs anywhere when it comes to kids using upper limb prosthetics.

That didn’t really make me feel much better.

So… We’re going to start working with our OT after the holidays. David plans to Skype with her to talk about the prosthetic and how it works. We’ll work on things for the next six months or so. We’re going to return to Chicago after I speak at a blogger conference in July. Before we head home, we’ll drop by to see David and see what his thinks about Jordan’s skill level. If he’s concerned in any way, I’ll see if I can get a consultation at our St. Louis Shriners. Jordan and I haven’t been back there since she was a baby. We might benefit from some knowledge over there.

I think it’s a plan that helps calm my worrying mind. I just want to make sure Jordan is safe, growing, happy, and healthy. I get worked up about the same stuff when it comes to her brother. I’m totally in worry mode this week for some reason. I guess it just comes with the mom territory some days.

I feel like we’re total pros now that we’re working on Jordan’s sixth ever prosthetic arm process. The very first one when she was four months old was done the old-school way. It’s when you go in to have the arm measured and casted, then you come back every week to check a fitting, test a socket and eventually take the arm home. The prosthetic company in my town tried that and within a week, my four-month-old baby had grown out of her arm.

I knew I had to do something differently.

I found a group in Houston that builds prosthetics for children. I went down there two years in a row to build arms that were put together in five days. Unfortunately those arms eventually made Jordan mad. They didn’t do what Jordan wanted them to do and she would yell at them. I needed a switch to something that she could use without anger. That’s when I found David Rotter and convinced him to also go forward with the five day build process. We toned down the process and focused on passive and eventually body-powered prosthetics.

Today, Jordan got to work… Our new goal is to build a helper arm that has an elbow that Jordan and bend with her shoulder harness. David warned me that the process may not work immediately for Jordan and she could get aggravated. So he’s also building a release near the elbow so Jordan can use the harness or the elbow release. That will give Jordan options and less anger.

I totally support that.

Other tasks Jordan wants to get better at: swimming and pushups… maybe swinging a baseball bat.

You’re looking at the final structure of the arm until tomorrow. By the time we get to the office tomorrow, the team of men and women working on this prosthetic will have built it and included her super awesome Hello Kitty design. It’s super exciting. Jordan was kind of whiny during today’s building process. All of this stand up, sit down, stand up, sit down, put on an arm, take it off process was “annoying” as she said. But she’s proud and looking forward to tomorrow. Oh – and she really likes Mr. David.

If you’re in the Chicago area, it looks like I have a Born Just Right meetup planned this Sunday at the Chicago Children’s Museum on Navy Pier at noon. Please leave a message here or on the Born Just Right Facebook page and let me know if you’re interested in joining us!
_________________________
Did you know we’re holding a fundraiser for Jordan’s birthday? Read more about it here or check out her birthday fundraiser page. Thanks so much for considering a donation for the No Limits Limb Loss Foundation so two kids can attend Camp No Limits. 

We have had a very exciting weekend in our household. Jordan and I are gearing up to head back to Chicago to build her next helper arm. She had the challenge this weekend to pick out the next design for her arm. The cool thing about the type of prosthetics she uses is we can find any fabric design and a chemical turns it into the cover of her arm. Last year she found a fun Disney Princess fabric that gave her the ultimate princess helper arm. This year she picked….

Hello Kitty! 

Jordan’s never been a crazy Hello Kitty fan, but she likes her and this pattern was just all kinds of fun. Look at all of the colors! I didn’t have any say in the pick, but I’m excited with this. I think Jordan will have fun with it.. Plus, it needs to last 18 months if we can help it. I think this fun pattern will be able to keep her interest for a while.

As we were shopping for matching ribbon for her helper arm, I got an email alert from Jordan’s birthday fundraiser. It told me someone donated $700 to her effort to send more kids to Camp No Limits. Seven. Hundred. Dollars!!! Jordan and I were both squealing in the parking lot of Hobby Lobby. We’re honored and touched. We have now raised enough money for four kids to attend camp and only $75 away from sending a fifth.

We’re so excited and Jordan wanted to do a quick video this afternoon… She  also gets to reveal her newest look (that matches her new helper arm)!

Ever since we started following Winter the Dolphin’s story, Jordan and I have been fascinated with animals that use helper legs. I was so excited to stumble onto a Wired magazine article. It’s called Animal Prosthetics Help Human Amputees Move Again.
The slideshow of different animals is really cool. I recommend checking it out. The author, Emily Anthes, wrote a separate blog about two elephants who have survived with the help of prosthetics in Thailand. She had mentioned she thought the two animals deserved more space than the Wired article offered.

One of the first things Jordan and I did was attend the Amputee Coalition’s upper limb prosthetic session on current and expanding technologies. I have to say, there still aren’t as many huge advances in technology as I would have expected five and a half years into this experience. When Jordan was born, there was a lot of talk about bionics projects where researchers were looking at helping connect brain functions directly to a prosthetic. There are some brain wave studies, but it just doesn’t seem to have gone as far as I expected. But I have to say… taking the time to learn the facts about prosthetics makes it a lot easier to know what is right for you or your child.

What I do know is the standard treatments for prosthetics revolve around myoelectrics and more manual harness systems. Jordan had a harness that wraps around her shoulder. When she tightens her shoulders, the hook hand opens and closes. Her elbow is maneuvered with her hand, but when she gets older, a different shoulder motion could control the elbow. We had a chance to see how different prosthetics can be used with the help of pictures and videos.

When it comes to myoelectric arms, the complaint I heard almost immediately was how they are heavy. (Jordan learned that when she had myoelectric arms when she was a baby.) The other complains are how most myo hands do not have a strong enough grip to really get the job done. The most family “hand” is the iTouch. Jordan checked it out during the conference expo. (She was only slightly curious.)

There are also rotations for a “wrist” and even humeral rotation that I had not even thought of until I heard how that was possible with some prosthetics. Jordan’s prosthetist, David Rotter, was one of the presenters and he showed the details of what is available from finger prosthetics all the way up to above elbow and even for people who lost an arm up to his or her shoulder.

The hand with the most “buzz” during the conference was the Michelangelo hand from Otto Bock. It has a standard grip and when you really need it, you can flip a little switch and turn up the pressure on the hand to hold things tighter. There was a demo during the conference, but I didn’t get to see it. I guess that’s the down side of taking a small kid to a conference. You don’t always get to see everything you want!

The myoelectric hand that seemed to garner the most positive reaction was one that looks like a claw hand – it’s purpose is grip, not to look human since so far, most human-looking hands don’t function well enough to really act like hands. Here’s a picture of what I saw at least two women use and they said this one has a great grip:

High Fidelity Interface

The summer swimming season is here! Miss Jordan decided that she’d get experimental while we were in the pool. Two days in a row, she asked to use her activity arm and two different hands while we were there. First, she gave her swimming arm a try – it’s a little paddle that could give her extra pull. She was swimming last year without her helper arm… so it isn’t a must-wear item. But she decided to use it for splashing and having fun, but not a lot of actual swimming this past weekend.

She also used her hook hand to play on the monkey bars. I don’t have any pictures of her hanging on the monkey bars because she asked me to help carry her across every time. She created quite a spectacle at the pool while trying out the playground bars. I love that she’s willing to experiment with the tools she has. It’s almost been a year since we went to Chicago to build this special water-proof arm. I love that she’s still using it. Even better, I love that she’s asking to wear it.

Along with playing with helper arms, Jordan had a chance to play with her friends, enjoy the sun… and even a popsicle. Not a bad weekend I’d have to say.

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 who build 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 thought 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 feel comfortable with. But if you aren’t getting what you want from your prosthetist, you need to move to another person or company.

I’m really interested in the many changes in prosthetics as the military invests in tools to help support soldiers who lost limbs in Iraq or Afghanistan. When Jordan was very young, I reached out to a researcher named Todd Kuiken who was working on bionics in Chicago. He told me that he was certain prosthetics would be completely different and more useful for civilians by the time Jordan is an adult. He wasn’t interested in working with babies and children. (Boo.)

In the meantime, he was right. Upper limb prosthetics are amazing and changing rapidly. Earlier this year, the U.S. Food and Drug Administration announced a Medical Device Innovation Initiative. The first submission in this new effort is a brain-controlled upper limb prosthetics. It’s something I always thought would be best tested on children while their brains are still very able to “understand” the mechanics of functioning limbs… even if they need to do it differently. Either way, I’m fascinated with what they’re doing at Johns Hopkins. (That’s the organization that released this photo of the hand with the football.) I enjoyed this article in Time Magazine about the project.

Here’s a quote about what researchers are working on:

“The FDA has accepted its first submission from the Defense Advanced Research Projects Agency (DARPA) to review a brain-controlled, upper-extremity prosthetic designed to restore near-natural arm, hand and finger function to patients suffering from spinal cord injury, stroke or amputation. The arm system uses a microchip implanted on the surface of the brain to record neuronal activity and decode the signals to actuate motor neurons that control the prosthesis. DARPA and the FDA have signed a Memorandum of Understanding addressing both the development and review of this project.”

You can read the FDA’s full news release and watch a couple of videos online.

In the meantime, here’s a prosthetic that caught my eye while I was at work a month or so ago — it’s a tenticle-like hand! A University of Wisconsin industrial design student, Kaylene Kau came up with this idea during her senior year. It looks like a tentacle and it gives you all kinds of flexibility to grab and reach and hold. I’m fascinated by the idea. It looks kind of strange, but I don’t care about strange, I care about helpful. You can see all of the images of her design on Kau’s portfolio page.

I enjoy this image that shows a couple of ways the tentacle can be used and the image that explains the design.

Kau told journalists she was unable to find a company to market the design. The idea came about when her instructor challenged the class to think outside the box for prosthetics. I think this is as out of the box as I can imagine! She explained her vision to KOMO news in the video below:

Currently, the future of now is the iLimb. I followed Darin Sargent while he documented his life with an iLimb a couple of years ago. It was really cool to see a person who was born with a congenital limb difference use a tool that’s considered one of the best myoelectric options in prosthetics. Then I met Carly Davis online and have seen the success she’s had with the iLimb. If you’re curious how an iLimb works, you can watch the video below. These aren’t tools made for children, they’re made for adults who do not need a new prosthetic every year due to growth. These are incredibly expensive tools.

Once again, I allowed life to keep us busy and I haven’t updated enough here. I have noticed that when I’m busy, I tend to share tiny moments online on Facebook and that gets republished onto  Twitter.

While I wasn’t posting enough here, Jordan continues to wear her helper arm at school every day. This past week, she also wore her different arms to her extra activities. At dance, I put her in her shortest straight arm with her bouncy hand so she could come closer to putting her “hands” together during pirouettes. She had actually talked about wanting to wear her helper arm at dance but she put up a heck of a fight leading up to class. I worked out a deal with her: she needed to wear her arm just for ballet and she could take it off during tap. A funny thing happened. She wore it the whole time and told me she told me she was glad she wore it after class. That was cool.

Equestrian therapy was another awesome helper arm moment. Jordan was using the reigns with her elbow arm (which has a hook that opens and closes). She was switching between her hand and her helper hand. It was so great. After class, the therapist got Jordan to announce she’s going to try riding with BOTH hands this week.

Soccer was a little tricky. She used her activity arm – it’s longer and doesn’t have princess fabric on it – it has pink and purple hearts and for some reason it isn’t pretty enough. A friend gave me the idea to let Jordan pick out some princess stickers to add on the arm. That might inspire her to wear it more. At soccer, she was trying to bounce the ball with her knee and bounce with her head. I’m not sure if her arm was helpful or not. But I know the extra arm is great for balancing while she runs.

I’m proud of Jordan for expanding her uses of her arms and hands. Now if I could turn off her automated desire to protest her helper arms and then we’d have a great thing.

One other great thing – I upgraded this site. You can’t really tell. But it should be available on any type of phone when you to go to bornjustright.com on your web browser. I hope you like it!