a girl and her gear
/We love Zoe, and her realities mean that, in order to love her well as her mom and dad, our lives involve the blessings of various contraptions used to support the girl we can't imagine life without. We often get questions, sometimes from potential adoptive parents who are deciding if cerebral palsy is a special needs they can handle, so here goes...
We have the typical non-mobile rugrat accessories - a sling, an Ergo, a double stroller, a single stroller, a Bumbo, a soft chair, a supportive high chair, and so on.
Because of CP, we've added some more items to the collections. Case in point, her butterfly AFOs (that's "ankle foot orthotics") below are her third pair so far.
Then we added a loaner gait trainer to the mix, seen here with her old AFOs:
Then we graduated to her permanent one.
As you can see above, she's started developing some bad habits. As she walks around while leaning her chest forward and sticking her legs back, her brain is getting trained in all the wrong ways. She has the potential to be a lot more independent in time, but she won't get there if we let her form get sloppy now. So she'll still use the walker when our therapists or Lee or I are able to be positioning and supporting her to make sure her steps and posture are sound, but it's not going to be the solution for good mobility for her.
Enter a wheelchair.
Okay, so hers hasn't arrived. In fact, we haven't ordered it yet.
But during a moment when I was wallowing a bit about that upcoming order, the toy set above appeared on Zulily, which I am addicted to anyway. Despite the toy maker's intent for this set to help play out a doll's short-term need for medical equipment, I wanted the chair. My obsession for multicultural toys includes more than just diversity in skin tone but also in other attributes, like ability.
She also has a hard brace, seen above, to open up her usually fisted fingers and cocked wrist, and we Macgyver things like the foam from hair curlers on the handle on a fork to allow her to hold it better.
Of course, hers will be pink and purple. Nothing else for a diva like her!
Along with all that gear comes our handicapped placards as well, for use when Zoe is in the vehicle and the gear required for her is too problematic to deal with when parked farther away. I realized it was time to get one on a rainy day at the gym as I juggled Zoe on one hip and her gait trainer on the other side with an ache in my ribs where I cracked them a month ago.
(It's a good thing I love the dog, because that kept me from killing him when he trips me while I was carrying Zoe, which is how the cracked ribs happened because I couldn't just drop our darling Asian and break my own fall.)
And this week we're awaiting word about a grant to cover this aparatus: a home version of the LiteGait system, which is a harness for kids like Zoe suspended over a small and extra slow treadmill surface to help her learn to walk in correct patterns. I'm very optimistic that the funds will be available for it, and this would be a huge help in training her brain and working her muscles toward more independent mobility.
We lucked out when Mobility Research's VP of Research and Development was available to demo the device in our home to make sure it would work with our girl. She was a little unsure at first.
And then...
Here's a picture that shows it in full (with a baby doll in the toy wheelchair in the background).
The leaning and poor posture in the walker? Nowhere to be seen in this!
Usually these devices are in PT offices, but Zoe is so petite and tires so quickly that she would benefit most from multiple short sessions each day, led my me or one of her therapists. (Currently, she has PT twice a week, OT once a week with a possible second session being added soon, and speech once a week with a second session to be added as soon as her therapist's schedule allows for it.) Going to a therapy site for as many mini-sessions as she would need with this would be a logistical impossibility, even if she were an only child, but we could fit them in at home. But since insurance considers the LiteGait to be a commercial medical device, companies don't cover it for home use.
This particular piece of equipment isn't going to make anyone's life easier right now because it will require a lot of work from all of us.
Cue a BIG yawn!
Good thing that our girl who tires easily also works hard!
I'll keep you posted on the grant, as we will either get a "yes" or find a Plan B to get her access to this device that could help her reach her full potential. And? Later this week you can expect Upsee pictures! It hasn't arrived here yet, but it's coming.
Which means I'm positively giddy.
Who knew how excited I could get about medical equipment!
Sure, my girl has a lot of gear, but we embrace it all. Loving the girl means loving the gear too.