Thursday, September 1, 2016

all about that brace!

You might have noticed already, but there's kind of a big deal happening around here... 

No, not another kid. 
No, not another pet. 
No one won the lottery, a new car or the Publisher's Clearing House. 

Please say hi to Eliza's very first set of HKAFO braces and first gait trainer! 

HKAFO stands for Hip Knee Ankle Foot Orthotic, representing the areas of her body that this brace is securing. It's essentially the full monty of orthotic bracing. 

So what's up with these? What do they do? How does it help? How did we get such a contraption? What does Eliza think of them? All questions we've been asked on the regular over the past month or so. Here's the tale... 

The goal for most spina bifida kids is to do your absolute best to keep them as close to normal physical milestones as possible. That can be rolling over, sitting up, walking, etc. Around a year, most babies are learning to stand and walk (typical age is 10-18 months), but with the limited gross motor skills, that's not often in the works for a child with spina bifida. 
The normal coarse of action is typically to start with some small foot braces around 12 months and also order a device called a stander to get kids up. A stander does exactly what it sounds like. You stick Johnny in it and he is supported enough to stand up. Over time, the lower body muscles that do work are strengthened, the kiddo becomes a bit more communicative, and there's typically a better understand of exactly how much function a child has. After that, PT will often start working on forms of mobility if they are possible. 

Well, we aren't normal. Surprise, surprise! While our team at Vanderbilt, our Early Intervention physical therapist, and our aquatic therapist were all ready to move forward with the above plan, there was one small voice that brought up another idea. That voice belong to our private physical therapist, Stephanie. 

Let me just say, sometimes having a bunch of therapists is really neat. They all have various approaches and they all teach you something completely different. But sometimes, its a total pain in the derrière. They all have various approaches and they all want you to do something completely different... Oy! It can be hard to navigate as a parent! This was where J.B. and I landed when Stephanie said that she'd really like to get Eliza in a pair of HKAFO braces and teach her to walk. 

Can I be honest? I thought the idea was a bit ridiculous. Of course my daughter with T12 level spina bifida wouldn't be doing anything remotely close to walking any time soon, if ever. I'm all about some positivity, but puh-lease lady. But... I like the idea of getting her up and standing. And I'd also heard horror stories about it taking months and months to get a stander device approved by insurance. The idea of custom made HKAFOs seemed a bit more convenient. We could work on standing in a variety of places! And they'd be built in a matter of a few weeks. 

My other therapists didn't like it. That's probably putting it mildly... They said she wouldn't tolerate them. That it would be too much for her to really handle at this age. That we'd be spending a lot of money for nothing.  But the more I mulled the two paths over, the more confident I felt about the HKAFOs. So we went for it.

First, Eliza was casted for her braces. The fit has to be perfect or else she'd get blisters, bruises, and pressure sores. The orthodist measured her and then measured her and then measured her. Finally he casted each of her legs in a similar manner to the way you'd cast a broken leg. Once dried, the tiny casts were cut off and were given to the builder with all of her measurements. 

Three weeks later, the day before her first birthday, we got the call that her braces were ready and to come on down for our first fitting! The fitting appointment took about two hours, but in the end, they did such a fabulous that we haven't needed to go back for any tweaking yet. 

They seem complicated, but are less than intimidating once you get the lay of the land. She has three velcro straps that go across each leg, and a waist strap around the belly. There is a locking device at both the hip and the knee that can remain in place for full standing support, or be unlocked to bend either joint.

After receiving the braces, I called our PT Stephanie and we got started with trying to teach Eliza what to do. Initially, it was just all about getting her in the braces and standing up. She'd stand at the coffee table, at the sofa, or over an ottoman. Basically anywhere possible to get here in an upright position and try to teach her legs to bear weight. 
She took to it marvelously! As long as she had some toys to play with, Eliza would stand for days!! That, in and of itself, was pretty awesome.

After her first PT appointment, Stephanie saw that Eliza was perfectly fine hanging out in her new braces. To my complete surprise, she brought out a tiny gait trainer. That's the itty bitty walker contraption you're seeing in the photos. It's meant to be pulled with you as you walk. Stephanie said, "Here, you can borrow this one until you get your own ordered. Let's get the ball rolling. I plan to have her walking with these before she's two."

Huh? What? Do I seriously pay this insane woman? 
My T12 spina bifida kid? Walking at all? Before she's even two?? 
Really though. Who ordered the extra side of crazy?? 

That appointment, Stephanie showed Eliza how to stand with the gait trainer, to put her hands down on the handle for support and balance. And just like that, Eliza caught on. 

Two days later, Stephanie unlocked Eliza's hip support and taught her how to use the muscles in her belly and bottom to straighten her body. And just like that, Eliza caught on. You can literally tell my twelve month old to "Tuck your booty" and she'll stand up straight in her braces.
To be clear, this is something that a month earlier, another therapist had told me that Eliza would never physically be able to do - stand up straight with her hips unlocked. 

Five days later, Stephanie said, "Well, she's got the goods. Let's learn to walk." I watched as she took Eliza and her gait trainer to the middle of a large room, unlocked her hips, and started showing her how to shift weight from one leg to the other. As she leaned on one leg, she was to move the other forward for a step, then shift her weight and do the same thing on the other side. 

And just like that, Eliza caught on.

A week later, Eliza was going down a hallway twenty feet long, playing with some toys and walking back again. All with Stephanie trudging right along behind her, hands on Eliza's waist to help remind her to shift her weight. Pushing the gait trainer? Standing up tall? The steps? They were all her own.
The line I heard last week of "we should have her walking solo by the time she's two" has now been altered to "we should have her walking solo within a couple months". Even our limitless physical therapist is shocked at how quickly she's catching on to everything. So exciting!!

Check out Instagram for a full video of Eliza doing her thing!

To be fair, its a lot to learn for such a wee tiny gal. Push the gait trainer. Shift the weight. Move the other leg. Step. Go again. Eliza definitely has her work cut out for her in the coming weeks. Right now, she's wearing them for a few stints per day and its all practice practice practice. Hopefully this gal will be learning to walk short distances by herself before long.
But she is already completely blowing us away!!

And without someone in our corner pushing our gal and teaching J.B. and I a thing or two, we wouldn't be here! We're so thankful to have taken the chance with these braces and seeing what this little ball of sunshine can do.

Go Eliza go!!!

1 comment:

  1. Hi, my name is Tamara Martins and I live in South Africa. I was told to terminate when i was 16weeks because my daughter had hydrocephalaus and severe spina bifida and was told she would be a vegetable. I'm a child of God and I believe in miracles.She has defied all odds and is making so much progress. I just read Eliza' s story although its been 3 years now. She reminds me of my daughter's determination to move and be active. I have made so many contraptions to assist my daughter to stand and move about. She is 1year and 2months...but your story has made me realise that I have to get the professionals to do it if not i could hurt her permanently. So saving up money to see a specialist and get her the brace and the gait walker. Thank you for sharing!