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Gwendolyn's First Steps

November 03, 2009 by Bill Strong

Over the last month we've been prepping Gwendolyn and getting her comfortable with her hot pink demo power chair at one of her therapy sessions every week. She's taken baby steps, as usual, warming up to the idea at first and slowly making her own decision when she's ready to take the next step.

Last week, she was very comfortable sitting and playing in the chair, so we decided to turn it on and give her the control for the first time. She did amazingly well and was in the seat, driving by herself, for more than five minutes. She needed help with her head support, but she was moving forward all alone. It was truly unbelievable to watch! This week we added a Hensinger Collar that we purchased from SMA Supply to further support her neck and it really helped make her more comfortable. So today, on her second turn in the drivers seat, she did even better and was in the chair for an additional five minutes driving around the therapy room, looking for Mommy, smiling as she chased her, and starting to get the hang of the controls.

Stop for a second and think of what a huge step and accomplishment this is for her. In her two years of life, many seasoned doctors doubted her ability to stay alive, let alone drive a power chair some day. She's never crawled, walked, or sat up on her own and she's completely paralyzed -- save for the slight movement of her neck and fingers. Less than a year ago she couldn't be elevated at all -- at ALL -- without choking dangerously on her own secretions. Her entire life she's remained almost completely flat and she's never moved while looking straight ahead because we push her in her wheelchair/stroller facing back at us so we can always tell when she's choking and needs suctioning. So, think what a huge step this is for our little Gwendolyn. It's almost unbelievable.

I'd be lying if I said that I always thought this was possible -- there are many reasons why it shouldn't be. With a condition like SMA, words like "always" or "definitely" or "certainly" are not used lightly or often. Watching Gwendolyn sitting up unassisted and controlling her very own power chair, moving around the room and turning to see who's left and who's right, was very emotional for me. This was me watching my little girl crawl for the first time, take her very first steps in this world -- things I've never been able to experience with Gwendolyn and that I truly thought would never be possible at certain points along Gwendolyn's journey. I get goosebumps even writing about it. And most importantly was the look of pure joy and excitement on her face the entire time -- I'll never forget it! Ever.

We now have Gwendolyn's demo power chair at home with us. We'll be giving her time in it on a more regular basis, which should help her get more comfortable with the sensation of moving herself around and learning how to operate the controls. Baby steps, as usual. For now, I'm so proud of Gwendolyn and her courage to take her first steps -- huge first steps for her and for us on so many levels.

(The video is a bit shaky because I had to be quick on my feet to preserve my toes. Note to self: flip-flops and 300 pound power chair = not a good idea.)

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