There is only YOU

A few years ago, I told Elliot the story of an elderly friend of mine... we'll call him Bob... whose family was very poor. His mother offered to throw him a birthday party even though they couldn't afford it. Bob was thrilled and gave all of his classmates an invitation. His mom scraped together enough money to buy ingredients to bake a cake and give each child a candy party-favor. The day of the party, not one person showed up.

I shared this story with Elliot to explain why people develop certain adult traits. That childhood experience shaped so many aspects of Bob's life. He admitted how it both helped and hindered his relationships, career path etc. And, I hoped it would help Elliot choose his words and actions carefully when interacting with others... because you never know how you might influence someone.

Well, yesterday Elliot was playing ToonTown (a Disney community game - online). Each child has a character (a Toon) that they move throughout ToonTown, interacting with other children from around the world. One child's character sent out a notice to the children currently online that he was having a 'virtual' party. ToonTown instructs the children as to how to get their character to the right place at the right time (it's pretty cool).

When Elliot's Toon arrived, he realized that he was the only guest present. "Mom," he shouted to me while I was doing dishes "This poor kid hasn't had anyone else show up to his party!" I made some small reply of empathy and returned to my task. When I went to check on Elliot 5 minutes later, he was still at the 'virtual' party even though there was nothing for his character to do and no other guests to interact with. I suggested he say 'goodbye' and return to his other Toon games. I was surprised by how adamant he was that he remain for the hosts party (set for a full 20 minutes). Elliot was concerned that "the child behind the toon" was feeling badly and he didn't want to leave the kid alone. So for 20 minutes, Elliot had his Toon walk and skip around the playground area... hoping it was making the host feel less disappointed...

I was touched by Elliot's sensitivity - not surprised, but intrigued I guess. And I thought about how easy it is for all of us to think that "the other people" will show up to a party, sign up on a volunteer list, speak up about bad service..... or donate to a worthy cause. But the bottom line is: We don't know what other people are going to do. And we can't leave important things up to other people. We have to do what is right - in our lives, for ourselves and for others.

Elliot Adler has CMT - his nerves are dying. Whatever nerve and subsequent muscle loss he experiences between now and a cure will most likely be gone forever. So a cure is not only important - but time is of the essence. Please 'show up' for Elliot. Help the folks who are working to find a way to stop CMT's progression - and possibly find a cure. Visit https://www.hnf-cure.org/node/2987 and make a contribution today.

Thank you
Tracy

A morning at the M. Carlos Museum

Visited the Michael C. Carlos Museum this morning to see the Southeast's largest collection of Egyptian mummies. Elliot and his sister Rachel really loved it... and although the mummies and intricately decorated cases were the highlight, they were equally enthralled by all the miniature carvings. The kids love playing with small animals and miniatures so they talked about how great it would be if they could open the cases and play with all the 'cool stuff'. Broken pieces of ancient pottery and hieroglyphics were lost among all the tiny treasures... To each his own! This college museum was larger than we expected and parking was at the edge of campus... All that walking was good for Elliot's muscles but it took its toll. We took lots of bench-breaks and his ankles were so tired by the time we got back to the car that he just wanted to go straight home.

Life in Atlanta

Elliot turned 9 years old on July 5th! And he celebrated his first birthday in his new home... Aunt Caryn outdid herself on the cake - as usual.

Those trips back and forth from Asheville to Chapel Hill were a bit too much... So, after months of planning, the Adlers have moved to Atlanta, GA! Not only does Elliot like the new doctors at Emory, we can get there in 10 minutes from our new home. Last week we just 'popped over' to the prosthetic department to get his new braces adjusted - total drive time and appointment time was less than one hour! "Sweet!" as Elliot would say. To tell you the truth, Elliot's a little disappointed that the long trips to UNC Chapel Hill have come to an end. They provided him with a great opportunity to get out of school for an entire day!

Atlanta has been great. Elliot and Rachel comment often as to how friendly everyone has been - which is quite a statement for such a large city. The only drawback we've noted is the heat. The mountains of North Carolina provided us with a more comfortable climate... Instead of another condo, we're in a house this time. Elliot is loving the big (private) yard and the treehouse/fort inthe backyard.

A Trip to Emory Medical In Atlanta

On June 14th Elliot had an appointment with Dr. Robert Bruce of the Emory University Medical Center. Dr. Bruce is a pediatric orthopedic surgeon who was recommended to us by the folks up at UNC Chapel Hill. We are beginning to make a transition from Chapel Hill to Atlanta for various reasons. One of which is the presence of family in the Atlanta area...

We got to Atlanta on the 13th and spent the night with Aunt Caryn and Uncle Joel. The kids had a ball in their big back yard - following uncle Joel around as he did yard work and made preparations to get the in-ground pool ready for summer. The next morning, we had the pleasure of popping over to Aunt Caryn's cake shop www.carynscakes.com to sample some of the day's decadent fresh baked treats. YUM!

Then, it was over to meet Dr. Bruce. We didn't think anyone could be a 'cool' as Dr. Campion (Chapel Hill) but we walked away from our little meet & greet with Dr. Bruce amply impressed. It was obvious that he knew his business and I was pleased to know that he and Dr. Campion were of like mind when it came to treatments, progression etc. In many ways, it was a second opinion. Elliot thought Dr. Bruce was great. Our next appointment isn't until this fall...and in the meantime, Elliot's been charged with a persistent wearing of his day and night AFOs (braces). Stretching must be done on a daily basis.

It was a good little road trip.

Back to Chapel Hill

Jobs Don't Define Us
On Thursday, April 9th, Elliot and I drove over to the UNC Medical Center . Everytime we make this drive I grab a few books on CD to entertain us along the way. During the last two trips, Elliot didn't want to listen, so I didn't bother to go the library this time. Naturally, the first thing he asked as we merged onto the expressway was "So what book are we going to listen to?" I knew we'd pass two county libraries on our way down the mountain so we stopped at a gas station in Black Mountain to get directions to their library. The woman was very kind and I was pleased to learn it was close by. Unfortunately, she got confused on her directions so I had to make a u-turn. I muttered "Well, she was right about the bank being on the corner but it was on the left, not the right." Elliot's nonchalant reply: "Well, what do you expect mom. She works at a gas station." After a brief discussion about simple mistakes ALL people make, and being considerate of everyone's station in life, we got to the library. I didn't want to beat a dead horse but found it necessary to remind him during a subsequent conversation that it's best not to judge other people. He's terribly sensitive to people looking at his legs so it was a good reminder that people are more than their job, more than how they look, and more than their limitations.

New Braces
During our visit to the Children's Physical Therapy Dept on Friday morning, Cathy Howes fitted Elliot into his new day AFO's (ankle-foot orthodic) and his new night AFO'snew braces. They felt different - as usual - so he was immediately annoyed by it all. She also gave us some new stretching exercises to practice. Since his muscles are getting to tight, this was extremely uncomfortable but he got through it.

UNC Basketball - 2009 NCAA Champs
The highlight of this trip was our stop onMain Street - where they were selling a plethura of NCAA championship gear. People were waiting in line as the first shipment of t-shirts and hats had just being delivered that morning. Living the charmed life that we are, Elliot and I were at the right store at the right time and managed to grab a t-shirt for he and his sister, Rachel. And a hat for Master Elliot. He was thrilled.

The Speedy Mouse Project

For Immediate Release: Speedy Mouse and Dr. David Pleasure take on “The Dark Side”

Dr. David Pleasure of the University of California-Davis is developing a mouse which will 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.

“With continued funding,” Speedy told reporters. “Dr. Pleasure will make great inroads to finding a cure for CMT. May the Force be with him.”

Make a donation today at www.hnf-cure.org.

As many 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’.

Please Support the Speedy Mouse Project
I’m challenged to help my 8 year old understand the time and resources it will take to find a cure for CMT. All he wants to know is “when will I be able to run again” or “how can I make this go away”. I wish I could give him the date, time and place. But all I can provide is reassurance, hope and love. Please support Elliot by supporting H.E.L.P.

Elliot thanks you for your generous support!

Thanks to Anna at the House of Mouse for the use of her terrific mice!

January 2009

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 Lesson
Many 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!