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.

Back to School Update

• 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

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.