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June 27, 2010
Wow... funny how time flies when you're doing well!
Molly turned 10 this year- an amazing accomplishment given that the docs told us upon her diagnosis, "without treatment, she won't live to see her tenth birthday." Needless to say, a big celebration was in order! We had the entire family over for a birthday bash, complete with Molly's choice of a custom-made red velvet cake and her favorite pizza. Currently, Molly's favorite color is Purple, and her favorite tv shows are anything on Food Network, Disney channel, or Nickelodeon.
Molly officially decided to go by her formal name of "Margaret" this year. NO warning to her parents or family, but an important assertion for our independent girl. (FYI, I cannot call
her anything except Molly...)
We just returned from Margaret's 9-year-post-transplant visit to Duke. Everything looks good- stable and unchanged, with the exception of a few areas of growth, which are always welcome! A new of pair glasses should arrive soon, and a surgery on her foot may be on the horizon. The surgery would shorten a tendon on the outside of her left foot to avoid her valgus positioning, due to brain damage suffered when her VP shunt was placed 10 years ago... ugh! While Margaret grew this year (she is now 4' 6"), her muscles around the left shin bone did not. They are now stretched to the max, which results in Molly walking on the outside of her foot. Despite the efforts that have been made with orthotics, stretching, and PT, Dr. Escolar confirmed that this is a neurologic deficit, and only surgery can improve her walking. She is due to get Botox injections next week in the muscles surrounding the shin, but this
will provide only temporary relief. We'll see Dr. Sarwark this week to discuss his thoughts about surgery this summer.
3rd grade was a stellar year for Miss Mol- the amazing team coupled with her enthusiasm for success made a remarkable recipe for Molly to strive forward academically and socially. She basically made up a year and a half of time, and is on target with her peers in spelling and math. Reading and language concepts continue to be a struggle for Molly, but she still made progress this year, with the help of a private tutor and a fantastic couple of teachers at school.
In addition to her academic progress, Margaret has also made it big on stage. She loves to sing, and has been in Annie, Suessical, Grease, HSM2, Mary Poppins, and this summer, she'll be in Wiz-O-Mania. We have a stellar children's theater production company that has taught Molly SO much about being in front of others and using her talents.
Speaking of talents, here's a link to Molly's debut solo at her school's talent show this year. We are VERY proud of her!
http://www.youtube.com/watch?v=mkBnVyZykiU&sns=em
This summer, Molly is attending summer school. She's very excited to be taking a class called "Reading, Writing and Recipes"... she's still our budding chef and Food Network junkie... and she will also attend a week-long cooking camp at Whole Foods later in July. In addition, Molly is signed up to take a course called "Lose the Training Wheels"- a nationwide organization dedicated to teaching kids with special needs how to ride a two-wheeler bike.
http://www.losethetrainingwheels.org/
Otherwise, Margaret spends a lot of time in the pool- both therapy-based and for fun, which has made her a great swimmer! This year, she joined the "Lightning", a swim team for Special Olympics. She swam 2-25's in butterfly and freestyle at her only meet, and got 2 ribbons for her amazing work. Her swimming will come in handy as we head to a family reunion this summer in Breckenridge, CO, with 100 Birminghams present.
Even 9 years out of transplant, Molly (ahem, Margaret) continues to amaze us with her continual efforts and charming personality. She grabs a hold of your heart and makes everyone she meets smile. We thank God every day for blessing us with this amazing little girl.
Peace,
Jenny
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February 2001