Originally Published: January 2009
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Elliot and I returned from a very full day at the UNC Medical Center in Chapel Hill.
First, I must say a big thanks to G-d for blessing our Earth with... Nintendo DS. Elliot's appointments are scheduled on "clinic days" which is a euphemism for "prepare to wait". The waiting rooms are packed from the minute they open the doors. We arrived at 8:15am and we didn't leave until after 2pm. But Master Elliot hardly noticed as he was busy defeating the Star Wars Imperial Forces and reaching game levels previously unattainable. It was a good day for Elliot and a bad day for "the dark side". I was proud of him for being so patient (or preoccupied).
First we saw Dr. Campion, the pediatric orthopedist. Elliot's day braces started rubbing hot spots on the outside of his feet about a week ago so he'd only been wearing his night braces. The timing of this visit couldn't have been better, as Dr. Campion asked his PT department to adjust the braces before we drove home (which they did!)
At this stage in Elliot's disease, his right foot is in need of surgery. As the nerves die back and the muscles atrophy, his tendons (mostly under is foot; in the arch) are tightening up so much that even the AFO's can't get his foot into normal position.
Prior to putting Elliot under the blade, Dr. Campion wanted to give the right foot one last ditch effort at reform; see if he could get Elliot's muscles to relax and lengthened... So, he put Elliot's right leg in a regular ol' fiberglass cast. It's pediatrics... so of course he got to choose his color - and GREEN it is. I'd like to think this is a reflection of our new energy efficient car, our constant recycling, our efforts at conservation in our home... But I think it was chosen as a base color for the camouflage pattern he initially wanted me to draw on it... After further discussion, I think he's fascinated with the possibility of having his friends sign the cast so I'm off the hook on the artwork...
We drive back in a few weeks to have the cast cut off. If there isn't enough re-gained flexibility, Elliot will need his first surgery. It was a long ride home but Elliot seemed content. And I massaged and stretched the daylights out of his left foot while Rachel told us about her day in Kindergarten.
A Massage Therapy LessonMany years ago, Nancy Catherine worked at our restaurant while attending massage therapy school in Asheville. In November of 08’ she returned to N. Carolina to attend a continuing education course and Elliot, Rachel and I had the pleasure of hosting her visit. We planned a ‘massage training’ session so that I could learn new skills for massaging Elliot’s legs each night. Great! What I had overlooked was my 8 year olds ‘boyness’ and the drop-dead gorgeous appearance of Nancy Catherine. All of a sudden she wasn’t just someone to secretly admire. She was going to touch him! That was almost too much for him to bear. I don’t think she’d ever had a client run from her! When we finally smoked him out of hiding and he was able to lie flat and still, Nancy Catherine asked him for permission to continue. She was a little baffled by the effect she was having on him, yet she was so gracious and present to feelings. Once the lesson began, Elliot became very quiet and serious. We watched her intently as she worked on his legs. I don’t know what I enjoyed more, the training itself or witnessing my son work through the angst of a crush. In the end, I gained a greater understanding of how to work on Elliot’s muscles and how to monitor my own posture and technique so that I don’t hurt myself. Thank you Nancy Catherine!
For Immediate Release: Speedy Mouse and Dr. David Pleasure take on “The Dark Side”
carry Elliot Adler's form of CMT, post-natally. Master Elliot has named the mouse ‘Speedy’. Together, Dr. Pleasure and Speedy will take on the Dark Side of CMT by testing various drug treatments over the next few years. The information will be made available to researchers across the galaxy.
any of you already know, my son Elliot was diagnosed with CMT2 (Charcot Marie Tooth) in October of 2007 when he was 7 years old. In a nutshell: his nerves are dying - starting at his toes. The Adler grandparents, in cooperation with the Hereditary Neuropathy Foundation, founded the “Help Elliot Live Proud” fund (H.E.L.P.) to raise money for CMT research. Dr. David Pleasure has just launched the first of these efforts. Please consider book marking elliotadlerscorner.blogspot.com. This blog will be updated often with bits of information on both the ‘boy’ and the ‘research’.
