In 2014, while seeking a second opinion on Claire's back, the orthopedic surgeon confirmed that Claire had Early Onset Scoliosis (EOS). While most of us know someone with "a little scoliosis" that they live with, Claire's form is progressive. I will never forget asking the surgeon what would happen if we just didn't do anything and let her live with a curved spine. He replied, "That isn't an option. It will crush her heart and lungs. The only thing we can do is to slow the progression as much as possible to delay surgery."
And delay we did.
Between initial diagnosis and last year, she spent almost 18 months in casts that went from her arm pits to her butt crack. When she wasn't casted, she had countless back braces. To celebrate after each cast, she got to spend as long as she wanted soaking in the bathtub.
When she wasn't dealing with that pesky surgeon trying to slow down her curve, she was busy being a kid and getting as strong as possible.
She hit 20 lbs almost exactly five years ago (3/7/14), and she celebrated with a giant bottle of champagne!! Kidding, that was me...my memory is fuzzy.
And she has spent over 1000 hours in therapy learning how to sit, walk, and ride a bike - despite having her center of gravity a bit wonky. Daddy has been gone for over a year at two deployments, but she celebrated homecomings with a trip to Disneyworld and a trip to Jamaica. She became a big sister to Aubrey, and she is waiting for baby brother to join the party in three months.
And here we are exactly 12 hours away from spine surgery. She is one week away from her 7th birthday, and she finally hit 30 lbs.
In 2014, there was a new technology called "MAGEC Rods" that had just been approved by the FDA. Rather than kiddos with severe scoliosis getting cut open every 6 months to "grow" the rods - doctors now had the option of putting in a magnetic rod. Every three months, kids could go to the doctor and get a magnet run along their spine to "grow a little". We knew that was the best option for Claire, and while we waited for her to get strong enough the technology went mainstream.
Now, there's a set of rods sitting at Children's Methodist Hospital waiting for Claire to receive in the morning. We'll spend the next 4-6 years with the magnetic rods until she is big enough to have a final spinal fusion to permanently stop the progression of her scoliosis.
So, here's to the next five years...she'll be a little bit straighter, and just as much of a fighter.
