a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Wednesday, February 26, 2014

She Will Ride Many Miles

After a tragic diving accident left James, the son of Nancy Wellons, a quadriplegic, both he and Nancy began their journey into the world of AmTryke Cycles. From their venture into adaptive cycles grew their nonprofit corporation, Wheels on the James of Lynchburg. Since the two began in 2011, they have been able to provide over 90 cycles to deserving individuals with a physical challenge that prohibits them from riding a traditional bike.

Obviously, Oia is among the physically challenged. She/we have tried, over and over and over again for a long time, to ride a traditional bike. Even with various bike styles and modifications to the traditional bike, the challenge was too great for her. And dangerous. Oia sensed her own instability and often gave up. But, thanks to Wheels on the James, Oia is now one of the over 90 individuals who not only can safely sit atop their own adaptive cycle but can ride it, too.

To my 6 and a half year old, that's life changing.
I remember my first bike. The light blue bike with a light blue banana seat and high handle bars. I have memory of it shiny and new, being held up by the kickstand inside our garage, as we waiting for a snowy winter to fade and warmer spring days to emerge. I also remember the sense of independence and pride that bike gave to me once seated on it. It was my, MY, vessel from where I had the power and freedom to make choices of my own destination. It allowed me to roam carelessly throughout childhood while developing a healthy sense of confidence. Every now and then I'd kick my legs up or let go or seek a downhill ride. All because I could. And just for the thrill of it. I remember that feeling. And to know that Oia is getting a similar taste of something so sweet and so powerful to her developing young mind fills me up in a very good way.

The new cycle has been ours for just 3 days and for now, it lives inside. There is no time to wait on winter to fade away to warmer days as the wait for her to ride a bike of her own has been long enough. With a few smaller pieces of furniture pushed aside, there is a perfect track looping the downstairs of our home where Oia now rides, every morning before and after school, around and around and around... followed and slightly pushed by us. With just a short amount of practice, she has learned to propel on her own the length of a room. The first time I felt the guide handle pull from my hand and realized she was slowly inching forward on her own felt no different to me than the day she took her first independent steps. My eyes that well with happiness begin to overflow when my tiny, yet strong 6 year old looks up from her new bike and flashes the biggest Of-course-I-could-do-it-Mom! smile. Those are the prettiest of all her faces.
Thank you, Nancy, James, and Wheels on the James. Your selfless hearts are made of pure gold. Our summer just got more fun, because of you. Family bike rides are in our future now and biking at the park, with friends, is in Oia's future. No more watching. No more saying I wish we could find a bike that Oia could ride. You have provided our daughter, as well as many others before her, with a lot more than a bike. A whole lot more. And we are so very thankful. With each mile behind us, we will think of you.

Monday, February 3, 2014

Righting Righty

From the age of 9 months on, our girl has worn some form of a "dancin' shoe", "boot" or "glass slipper". The need for such orthotics has never changed but the function of each pair over the years certainly has. All that is missing from the following picture is her KiddieGait, which is a form of orthotic that can be handed-down once out-grown. We gladly passed it on.

Seems we are in a constant battle with Oia's tight right calf muscles. There are brief periods of time when we think we've caught up in the game with Botox or casting but the spastic Beast is really bigger than us. Our December bout with Botox followed by casting made very little gains to Oia's dynamic range but from a passive stand point, she is more relaxed. At least a little bit. In English, her ankle can be stretched and held at a neutral position of 90 degrees (while stationary) with relative ease. However, when in motion (walking or running) she is still positioned on her toes. The prolonged toe-walking, due to pulled and tight calf muscles of the right leg, has slowly worked her ankle into a precarious position. It's something we have been watchful over for a very long time.

Typical stance. Weight shifted to left side, flat left foot. Right heel up.

Typical right ankle position, sans AFO. Poor thing. Righty bears very little weight while stationary. (Left heel is slighly raised here only because she is reaching for chocolate.)
That poor ankle looks like a broken ankle waiting to happen. I cringe watching her walk barefoot even though I know Oia is in much more control over her body and limbs that it looks. But even still, the time has come for Righty to step out of the lower fitting orthotic and into a more supportive and taller brace. The taller brace doesn't keep her flat, but flatter, and that ankle is snug and more appropriately aligned which makes for a healthy change. And it makes sense. Oia's legs function differently from one another and both are in need of two very different braces to accommodate the need of each. Such a simple (temporary) solution for such a complex little body.

Oia has been using the new brace for about 2 weeks now and in true Oia fashion, she is tolerating it beautifully. Her gait is solid, and more stable now. This change in brace was the right recommendation. Her sweet feet will be in this arrangement of bracing until something changes again... because it always does. It's just a matter of when.