In one year we’ve spent about 65 hours of drive time, another 20 hours in doctors offices and hospitals, about 100 hours in occupational therapy, 2 emergency room trips, 1 surgery, a handful of botox and phenol injections, several thousands of dollars, and about 3 months of time in a cast.
All of this is for her right hand and arm, or what we have dubbed “Righty.” Here she is getting her morning electrical stimulation.
Since Alexis’ injury, her entire right side has been an issue. A majority of her injury is on the left side of her brain, making the right side not work very well. What I mean by that is a number of things including: questionable ability to feel what “normal” people would call pain, an inability to regulate her temperature on that side of her body, a significantly slower healing time for minor scrapes or cuts, and a lack of overall movement.
Alexis has dynamic tone. In layman’s terms, whenever her body would naturally want to use any of the right side of her body, her brain sends an overflow of messages to that area. The result is that all of her muscles in that area get turned on at the same time, making it difficult to move and extremely tight.
If you want to experience something kind of like it, just flex your arm, hand, back, and shoulders as tight as you can get it, and hold it for about 3 minutes.
It hurts, it’s exhausting.
Now imagine that feeling happens to one side of your body about 80% of the time each day and throw in the fact that it’s always involuntary.
About half of the time when she eats, her arm comes all of the way up to her chin. Someone usually sits on her right side to hold it down for her. While she was walking on Christmas Eve, her arm shot up, got caught in the banister…flipped her over and her tooth went completely through her lip. Here she is giving a thumbs down at the emergency room.
A hand and an arm…it seems small in the grand scheme of things. But it has such a huge impact on her life. Alexis was really excited earlier this year when Righty was able to hold on to lip gloss while she unscrewed the cap. But playing with dolls, using markers, wearing gloves, using a walker, playing catch…they are all a challenge because of that hand and arm. Walking, sleeping, rolling over, sitting up, pulling herself up off the floor- all extremely hard.
I’ve admitted to getting a bad attitude about “Righty” at times. We put so much work into it, our OT puts a ton of work and thought into it, we pray about it, then we give up on it and 2 days later decide we work harder at it…and we just get little tiny bits back. It’s been a roller coaster ride for almost 6 years now.
The truly remarkable thing is that there currently is more hope for someone who completely loses an arm through an accident, than there are for people who suffer from dynamic tone. From hooking up a prosthetic to exposed nerves to wiring one to their brain, there are opportunities for amputees to have full functional movement of an arm and a hand.
You may (grimly) wonder if we could do the same with Righty. Don’t worry, we’ve thought the same thing. The problem exists in the communication between Alexis’ brain and her right arm and hand. It would be like replacing the outside of a car when the engine doesn’t run.
We’ve seen some amazing medical advancements in the 6 years since Alexis was hurt. Our hope is that by staying the slow course with our dear friend “Righty”, one day Alexis (and other people with dynamic tone from injuries and illness) will have the opportunity to regain a vital part of everyday life.