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.

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.

Jordan is brave. We’ve known that for a while… but HOLY COW did she prove it over the weekend. Her brother had a huge birthday party celebration at a local indoor playground. It’s a super large version of what my gym has… and the gym playground has clearly given her the bravery to do ANYTHING. While I coordinating the party, Randy kept watch on her. He says she did anything and everything it took to climb and slide and bounce and enjoy herself. I’m so darn proud. My friend Aurora was able to catch a piece of video of Jordan all the way at the top of the play area.

I also captured a moment of Jordan trotting with her horse, Thunder this past week. It was freezing outside, but Jordan didn’t complain. She did a really good job staying upright and centered on the saddle. It makes a Momma proud.

In other news, I’m wondering if there’s something the online community can do. The Shriners Hospital system isn’t able to raise money like it used to… And some of its hospitals are closing. It’s possible others will close soon. I learned about it from the Chaos and Mayhem blog. It looks like Shriners hospitals in Erie, PA, Galveston, TX, Greenville, SC, Shreveport, LA, Spokane, WA and Springfield, MA will close. According to Modern Healthcare, Shriners lost $3 billion due to the weak economy. Operations in the rest of the hospitals need to be trimmed by 20 to 30 percent. There are petitions out there to keep these hospitals running… But what will make that happen is money. I have only visited Shriners once, but it’s amazing what these hospitals do. I’m hoping to work with them to meet more families and children for Jordan to meet. Our closest hospital is two hours away… but some families have to travel across states to get there. Shriners are one of the few sources of inexpensive and free care for kids with all kinds of physical challenges. They do wonderful things and I’ve been lucky to work with them. If you’re able to give anything, here’s a link to donate to Shriners.

We have returned from our Shriner’s appointment… And of course the experts there think Jordan’s amputation was caused by something different. It doesn’t really matter to me. But they think what caused it was syndactyly – where there was some kind of vascular incident that prevented the arm from growing around 4 to 6 weeks gestation. They think her little skin tag on the end of her arm was some type of finger. We may never know. But they think she looks fantastic and healthy. We got to meet with a prosthetist and we’ll probably start working with him sometime after she’s 6 months old.

I consider Shriners to be a great place to help us get additional prosthetics… Like for riding a bike, swimming, climbing… Who knows.

On Thursday we’re going to meet with the PM&R doctor who will hopefully give us the green light to move forward with Jordan’s first prosthetic. I’m hoping it will be a tool that helps her on her belly — her neck strength isn’t up to par just yet. Hopefully that tool will help her. Only time will tell.