5th Grade Graduation

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

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 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

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

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

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

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.