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Saturday, June 28, 2014

Our Firefly Upsee is Here! Come See us Walking... Spina Bifida Won't Slow us Down!

We have had such a crazy week that I did not get a chance to update yet, but our Firefly Upsee is HERE! 

Both girls are really enjoying using it, and I think tomorrow I'll let David take a turn walking with them.  They will love it!

Before I get to the nitty gritty, here are videos of Madi and Ramya walking in the Upsee for the first time...

Madi went first, as she was done eating first. I held the straps with her, then realized I didn't need to.  Also, her foot slipped out a few times, but that was solved by using her chunkier shoes meant to go over her HKFOs versus her skidders.

 (Notice Conner's sweet voice in the video (he was taking the video)... he is so proud of his sisters and is such a great encouragement for them!)

(P.S.  My house is not usually that messy!  Please ignore our mess!)


With Ramya I went hands-free, and it worked just as well.

So now to the nitty-gritty, and then I will post a few pictures as well.  The firefly is great for the kids. It promotes a natural gait for them and is very comfortable.  There are straps that attach them to me that were designed to move as we do, giving them just enough flexibility.  I held the straps at first because I thought they were lengthening, but then I realized they weren't, they were just moving with us.  It's a perfect design! 

The Upsee is not a crotch dangler, like I was worried it may be, so the girls bare their weight to be able to use it.  Because of that, Madi needs her knees locked or her legs buckle.  Ramya, however, is able to have her knees unlocked, as seen in the video.  Madi usually walks with her knees locked anyhow, so this is a natural walking stance for her.  Right now Ramya is walking with her knees locked when she is not in the upsee, but our goal is unlocked, so it's nice for her to get to practice.  Because she had to do some of the work, though, she did get tired fairly quickly.

The upsee is easy to adjust and put on, once you get the hang of it.  I wish they made another size up, maybe I will e-mail and suggest it.  Because of the bulk of the HKFOs under the vest, it's already a little snug on Madi.  We have some time in it, but wish it would work for larger children.

The Firefly Upsee did not hurt my back, which I was afraid it would.  I am used to walking hunched over to help them, so this actually was a nice change.  It did put some pressure on my lower back, but not much, as the girls took most of their own body weight.

My one complaint is that I cannot walk with my natural gait when I am walking with them.  My knees hit the back of their HKFOs, and it rubs my knees and leaves red marks.  In order to compensate for that, I have to walk bow-legged.  I also can't pick my feet up much, so I shuffle a bit.  It's not the most natural or comfortable gait for me, but it really is not too bad.  It won't keep us from walking, that's for sure!

So how will we use the Upsee?  This is what I envision...

  1. Grocery Stores
  2. Dance Class (it frees up their hands)
  3. Miracle League Baseball
  4. Therapy
  5. Walking in the house for playing and for helping mom with chores and the such
  6. The mall
  7. The Zoo
  8. Treadmill Walking

I was hoping to be able to use this hiking, but because I can't lift my feet up well, I don't think it would be safe.  I think it's mainly because of where my knees hit their HKFOs.  For now, we will stick with having the girls go in the toddlerhawks on our back.

Please feel free to ask any questions!  You can comment here or e-mail me at Here are a few more photos...
Gearing up...
The straps are very easy to adjust.  There are straps at the top to help them stand up straight, and there are also straps at the bottom to give them extra support.

I was able to sit behind Madi while she worked at the table, without unstrapping, which was a nice little break.

The girls loved accessing their environment in a new way!


1 comment:

Mom Of Many said...

Oh Jamie!! I am so thrilled for you all! What a joy to see the girls walking!! I loved hearing Connor's voice - his enthusiasm was precious!!

I confess I read the post after watching the videos, so when I saw the "excuse the messy house" I laughed because the only thought I had as I watched was, "What a beautiful home!"

So great seeing you at the luau last night!!