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.

Introducing Miss Jordan’s new swim paddle! Before we left Chicago we had a chance to hop into a hotel pool and test it out.

The paddle is attached to her arm with two rubber bands and velcro. It’s very different for Jordan since it holds on tightly and she’s not a fan of how it looks on her arm. (She says it looks “smooshy.”) But she did enjoy playing with it in the pool.

Check out the video of our test run and I hope we’re going to be back to swim lessons soon so we can really see if this is a solution. By the way, we wanted to work on creating a paddle because when Jordan swims without any assistance, she ends up swimming at an angle instead of straight forward. A paddle might give her a little extra pull.

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!
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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)!

Over the summer Jordan had figured out how to tie her shoes under the guidance of some really wonderful friends at Camp No Limits. The challenge for me was taking those skills and extending it into the real world. Jordan didn’t really own shoes with laces when we got home from camp and I didn’t really focus on it too much since I was really just thinking about surviving the summer and getting her into Kindergarten without drama.

Now that things are going pretty well at school, Jordan’s occupational therapist has been looking for ways to help Jordan learn how to really figure out the shoe tying skill. I tried to work on the standard one-handed shoe tying process with Jordan but she wouldn’t work on it with me. She worked on it a little bit with her occupational therapist but Jordan would get aggravated. So our OT came up with a new idea. She modified how you use shoe laces… and she had a chance to show me how this past Friday. Once I learned the basics, I thought I’d replicate it with a pair of shoes that Jordan would beg to tie: Twinkle Toes.

I bought her a pair on Sunday and set up the shoes in a way for her to tie on her own. Here’s how it’s set up:

I shortened the laces and knotted two different colors at the bottom of the shoe eyelets.

I created loops by knotting the lace to the top eyelet.

Jordan took the loops and used her helper arm to hold on to the lace.

She pulled tight on the laces.

[Update: My friend Di reminded me the trick to keeping the shoe laces tight are by tying the lace around one more time before you double tie the loops. When Jordan gets better at shoe lace tying, I'll try to get video of her accomplishing this!]

When she was done, Jordan double tied the laces on both shoes.

Jordan proudly wore her shoes to school… But I learned that one day of new shoe laced shoes is probably not enough practice to bring those shoes to school. Jordan didn’t tie them tight enough and the shoes are probably a little too big. She had some trouble wearing the shoes at school. I think we’ll work a little more at the tying before she brings them back… If I can convince her to wait. She’s pretty proud of these sparkly shoes.

I’m sure Jordan will figure out the regular form of shoe tying eventually… but we’re going to give this version a try for now!

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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. 

Jordan, her friend Ashlyn and Jordan’s brother, Cameron, had an experience of a lifetime. They got to meet Winter the Dolphin in person and spend some special time together. I promise to write more… but I have to pack, get a little sleep and return home for all kinds of work that’s needed! We had so many stories and amazing experiences. I can’t wait to go through all of my pictures to share with you!

She did it! Jordan had her first day of Kindergarten and we all lived to tell the tale. Okay – that’s probably over stating it, but I had hoped the first day of school would go well. Jordan and her teacher worked together to help her classmates understand her limb difference.

So here’s how it went…. Let’s start back with the day before the first day of school. We have a family tradition that I started when Cameron was heading into Kindergarten. We go to a nearby indoor play area and take photo booth pictures together. This year was Jordan’s chance to take the pictures for the first time.

We played, we went out to dinner for a special meal and we had to have our favorite local ice cream before the night was done. We were exhausted, happy and very excited about the new school year.
So, I decided to interview Jordan about what she thought about Kindergarten:

Fast forward to the morning and both kids woke up ready to go! I got to start work a little late so I could walk to school with the kids and take their official back to school pictures:

I picked the kids after school and had to take them to work since I had to attend a speaking engagement. So before I left, I caught this post-Kindergarten interview:

I got an email from Jordan’s teacher letting me know that at the beginning of the day, none of the kids noticed Jordan’s difference until after she took her helper arm off. There were so many questions that the teacher read Jordan’s book to the class and let her pass around her arms and hands. Jordan told me she thought it was fun.

This morning, she was ready to do it again. I think (fingers crossed) we got things started in a good way. Now we just have to power through 12 more years of public school and at least four years of college. No pressure!

I won’t post a picture… because it just isn’t very pretty. But Jordan’s skin is breaking down from all of her prosthetic use this summer. She’s had rashes before, but the one she has on her little arm is pretty painful. It’s bumpy… and lumpy… and we’re using Desitin to cover it at night to help dry things out. We have to cover her little arm with a sock to make sure the diaper rash cream stays on her arm and away from her face and eyes. Jordan thinks it’s kind of funny. I’m hoping she won’t need the cream for much longer. Each morning she wakes up and clearly feels itchy and uncomfortable.

So far, she doesn’t equate the rash with her helper arm. She thinks the bumps are bug bites… And I let her think that. I don’t want her to connect something negative to her helper arm. So I’ll use the “bug bite” excuse for as long as I can.