Elliot's Corner

5th Grade Graduation

2011-05-21T15:28:00.000-07:00

On 5/20/11 Elliot graduated from elementary school. He wasn't sure he wanted to participate in the graduation ceremony because he felt uncomfortable walking in front of a group of people - when everyone's attention would be focused on him for a few seconds. But I'm pleased to report that he did it... and smiled a whole lot during the event.

"Elliot's Feet" Hits YouTube

2011-04-29T15:52:00.000-07:00

Elliot's made a YouTube video called Elliot's Feet. http://www.youtube.com/watch?v=fdj8IZ4QSoA
What CMT is lacking - aside from a good name - is a PR campaign that builds a solid support base....and let's face it, research money is spent on diseases with large communities of support.

So Elliot wants to get the word out. He wants Charcot-Marie-Tooth to be just as familiar as the word "Alzheimer's". He wants some of that research money to flow CMT's way.

Share the video - help build a huge CMT community of supporters.

Focusing on improvements

2011-02-01T18:21:00.000-08:00

2011 is developing nicely for Elliot. He's earned a couple of perfect scores on math and science tests in January. And he's learning to use the computer to send messages to friends from school (at the moment, we're counting this as a 'positive'). It's nice when things are going well... so it can offset some of his frustrations.

For instance, he's experiencing new issues with his feet. He's being tortured with 'hot feet' - a stinging/burning sensation that offers no warning for onset. There's no rhyme or reason as to when this happens so the element of surprise seems to annoy him as much as the discomfort. He can be in the shower, the car, relaxing on the couch ...and all of a sudden the stinging sensation begins. And there's little we can do to ease the pain. It's internal, at nerve level.

I'm proud of him for handling his challenges with an improved perspective. He's working really hard on how he chooses to view his disease. I have to wonder if the strength he's building in coping with his disease is what's inspired him to climb out of his rut at school. Or - maybe his progress at school is making him feel better about himself and his situation. Either way, I have to say that as things get worse, they also happen to be improving.

Looking Up

2010-12-09T03:11:00.000-08:00

While driving to school each morning, I ask Elliot & his sister Rachel to tell me at least 3 things they're grateful for. Despite his innate creativity, Elliot tends to get stuck on this and has developed some standard replies - such as: "I'm grateful its Friday and I don't have school tomorrow" or "I'm grateful for my new Star Wars game." But, he does manage to come up with some insightful, heart-felt gratitude. Here are a few I've collected this fall:

I'm grateful that...
* I got to use the hedge trimmers to help clean up the yard
* That Louis (our dog of 13 years who was recently put down) got to have one last vacation at the Lake Farm.
* I have a nice bed to sleep in at night
* I got a 100% on my science test
* Its cold out so I can wear long pants to hide my braces
* We have a new baby cousin - "Charlotte is SO cute"
* Mom makes such good hot cocoa in the morning
* I don't have any surgeries this school year
* My teachers like me
* We found a copy of the final "Charlie Bone" book series

It's not easy for Elliot to see the positive in his life. But, by looking for the small stuff each day, I think he's cultivating a knack for seeing how blessed his life truly is...

- Tracy "Aka: Mom"

A long winter

2010-06-25T15:42:00.000-07:00

Well, it's been way too long since we posted anything here. It was a long winter for Elliot. He had surgery on his right foot in December 2009 and surgery on his left foot in March 2010. Dr. Bruce did a great job but Elliot experienced a fair share of pain & suffering. Between this and the days missed from school, it was not an ideal winter/spring and Elliot's glad to have it behind him. The last cast was cut off the week before summer break started.

He talks often of how things will be 'when' there's a cure... and surprises me with his vision of the future. "Maybe I'll just have them cut my legs off and replace them with artificial limbs," he announced last week. I flinched and nearly shared what came to my mind... but in this day and age, children see technology differently than I did at that age. He sees Iraq war veterans skiing and running with their bionic legs and that seems like a good choice to him. Which makes me realize how unhappy he is with his diminished abilities...

Summer is hear and we are enjoying a break from everything normal. Elliot and his sister have been spending lots of time at the pool and in playing in the yard with the neighbor kids. Hope you are all well.
-Tracy

A Poem for Elliot

2009-10-14T05:53:00.000-07:00

Winner of the Grading Girl contest...

Unwrap Me
by Stefanie Dell’Aringa

Scout’s honor, this is my life:
I feel like an Egyptian mummy
being wrapped in slow motion from the feet up
My insides are like pottery breaking
As the python cloth squeezes
Unwrap me, please, and let me be a boy again
Because my ankles are tired
And I don’t like the word “prosthetic”
If Star Wars was real, I’d light saber myself
Out of this mess
Hurry, and find me a cure
Until then, I’ll go outside
I’ll blow hot, angry air into my trumpet
I’ll eat cake. Sweet!
I’ll decide I can wait
And then I’ll go to bed and dream
Of a ladder made of Legos
That reaches straight to heaven
and it doesn’t hurt to climb it

Taco, Dribble & Dr. G

2009-10-05T05:17:00.000-07:00

Elliot (and sister Rachel) adopted a tiger striped kitten and named him Taco. Once again, we've lucked out in securing a really special animal. Taco is laid-back, loves affection and has the personality of a dog!

A few weeks after Taco arrived, Elliot rescued a turtle that had washed up into the yard during the floods here in Atlanta. This stinky little creature has been relegated to live in the garage! It can't play, it's not soft & fuzzy, and it stays under water most of the time... but Elliot thinks it's the greatest thing ever. So - for now - we have another pet.... named "Dribble".

On the health front, we've received good and bad news this month... We'll start with the good. Elliot went to see Dr. Goldstein (neurologist) for the first time on October 1st and was told that he no longer needed to wear his night braces. Note: Dr. Goldstein has become a fast favorite of Master Elliot's! Unfortunately, the trip to Dr. Bruce's office (ortho surgeon) didn't go as well. Elliot will have the first of two surgeries on his feet in December 09. Dr. Bruce will stretch and move tendons. When he recovers from the first surgery, he'll have the second foot done.

Research is being done to find a cure for CMT2. If you'd like to help speed things up, please make a donation at www.hnf-cure.org.

Back to School Update

2009-08-19T10:24:00.000-07:00

School started last week. Our school is small but it's okay. We get to ride the bus home and that is really fun.
Rachel lost both of her front teeth in one week. It looks funny but I guess everyone does it. And she's raked in $7 between the two. There might not be a tooth fairy but there's money in lost teeth.
Went to get my new AFO/braces adjusted for the second time. They heated the plastic and reshaped the areas that are hurting my feet. I wish they'd hurry up and find a cure.
Signed up for band. Thinking about choosing the trumpet. There's no guitar in school band. Weird eh?
Weeblos/Cub Scouts starts in two weeks!

There is only YOU

2009-07-29T12:23:00.000-07:00

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

2009-07-17T11:16:00.000-07:00

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

2009-07-15T04:49:00.000-07:00

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

2009-05-21T10:50:00.000-07:00

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

2009-04-11T11:13:00.000-07:00

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

2009-03-25T08:52:00.000-07:00

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

2009-03-25T08:40:00.000-07:00

Originally Published: January 2009

--
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!

Autumn 2008 - Elliot Saves the Day!

2009-03-25T08:38:00.000-07:00

Originally Published: November 2008

--
Cub Scouts
Elliot is officially a Cub Scout. He attended his first camp-out last weekend with his daddy. According to Elliot they “ate bad food, used stinky outhouses, and had fun doing scout stuff”. Wow, where do I sign up!

When they left the woods early Sunday afternoon, his Dad rewarded him with a trip to the local camping store where Elliot was allowed to pick out his very first Swiss Army knife. I cannot begin to tell you how proud he is of that thing… and in his new ability to ‘whittle’. Woe unto any tree branch in the neighborhood that is within the child’s reach.

Chapel Hill
The University of North Carolina’s medical center has become our chosen health care provider as we’ve been unable to find quality care for CMT here in Asheville. Chapel Hill is a 4 hour drive one way so our visits always require an overnight stay. We made the trek down the mountain last week for an appointment to pick up Elliot’s new AFO’s (ankle-foot orthodics) followed by a visit with the orthopedic surgeon Dr. Campion… check him out http://www.med.unc.edu/wrkunits/2depts/ortho/PERSONNEL/FACULTY/campion.html
The appointments went well and Elliot is adjusting to his new ‘day time’ AFOs.

Nightly Routine
Each night at bedtime, I help stretch Elliot’s muscles and tendons through physical therapy exercises and massage. The latter is one of the highlights of his day. We use the electric hand held massager a few times a week but massage oil and ‘mama power’ seem to work best. Since there is no cure for this disease, our main focus is to keep the muscles and tendons as limber as possible.

Elliot in his night braces

After massage, we strap on his night braces…. which is a whole lot like going to bed with your shoes on. Elliot makes the best of it each night but wakes me up – consistently - at about 4am to the sound of ripping Velcro. He fumbles to get his braces off and whips them off his bed so he can enjoy his final hours of sleep.

Elliot Saves the Day
Elliot’s 3rd grade class had a field trip this week which consisted of a walking tour of historic downtown Asheville. I own a restaurant in the center of town so I knew my boy was ‘in the neighborhood’. I took a call from his teacher, Mrs. Reese, at about 10:30am. Elliot wasn’t complaining about his new braces but he was getting slower and slower and starting to lag behind. Mrs. Reese wanted to know if Elliot could hang out with me at work until the children were ready for their picnic lunch.

Western North Carolina has experienced drought conditions for almost 2 years but on this particular day it was cold and rainy. So in addition to agreeing to give Elliot a place to hang out, I offered to let all three 3rd grade classes have their picnic in my private dining room. Elliot helped set up the banquet room and within an hour there were 60+ kids filing into the Café. As host, Elliot roamed the crowd throughout the lunch making sure that everyone had what they needed. The children brought their bagged lunches, I provided the soda and the chef whipped up six dozen sugar cookies – served warm out of the oven. It was brilliant.

The kids were jacked-up on sugar when they boarded the bus to head back to school but I didn’t care. Elliot went from ‘slow poke with the braces’ to hero-of-the-day.

Welcome to Elliot’s Corner!

2009-03-25T08:32:00.000-07:00

Originally Published: September 2008

--
Welcome to the web-blog of one of America’s most amazing young boys.

Okay, that may seem like an exaggeration, but what can you expect from a doting mother! I thank you – quite sincerely - for visiting “Elliot’s Corner,” an on-going journal about Elliot Adler and the H.E.L.P. Research Fund.

Elliot was diagnosed with CMT2 in October of 2007 when he was 7 years old. His grandparents founded the “Help Elliot Live Proud” fund (H.E.L.P.) to raise money for CMT research shortly thereafter. This blog will be updated on a regular basis with bits of information on both the ‘boy’ and the ‘research.’

Please consider book-marking this page so you can check in on Master Elliot once in a while. Research progress will be reported as it becomes available.

Thanks again!

Enthusiastically,
Tracy
Aka Elliot’s mom

Elliot’s 411:
Home: Asheville, NC
Siblings: One sister, Rachel
Favorites:
* Vegetable: Asparagus
* Food: Chicken
* Activity: Swimming
* Toys: Wooden blocks, plastic animals, action figures and anything that allows him to use his imagination.
* Cartoon: Chowder
* Movie: Star Wars (all six)
* Video Game: Age of Mythology

The H.E.L.P. Fund
As a mother 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, love and hope.

Reassurance that he is whole and complete just as he is.

Love because he is so darned loveable. Hope in the fact that there are folks like his Grandma ‘Ice’ and Grandpa Nat raising funds for CMT research.

Please stay tuned to “Elliot’s Corner” for updates about Elliot and the work of the H.E.L.P. fund.