Evie’s busier than ever

December 13, 2017

The van her family received continues to be a blessing!

"Evie is able to safely and comfortably travel and our backs aren't being placed under the strain of transitioning her between the chair and a carseat. We truly can't thank Chive Charities enough.

The last year has been a busy one as usual. In January, Evie went to Disney for the first time and during our trip we also went on a helicopter ride. She loved every minute! We did have a few bumps with seizures towards the end of the school year, which resulted in her second trip in an ambulance, but we were able to get her stabilized and she returned home. She started first grade, but her school year has been cut short due to another surgery. She has had 6 procedures in 5 years, and this most recent one has been the hardest in terms of recovery. On October 18th, we checked into Wolfsons Childrens Hospital, where she underwent a femoral osteotomy on both legs. Her leg was 60% out of the socket on one side and the other side, while not as bad, was corrected at the same time. Evie stayed in the hospital for about 10 days (so did I), and once home we were on a routine of pain meds and sleeping. After about 4 weeks, she was able to resume aquatic therapy (which she LOVES), and then a few weeks later she returned to school. Evie is truly a fighter and we ask so much of her and her little body. She never ceases to amaze me with her resilience.

She turned 7 on October 4th and we hosted her birthday party at the Mandarin Skate Station. She had a blast! This girl really enjoys being on the rink. During one of our trips to Atlanta to her Rett specialist (Dr. Tarquinio), we went to the aquarium and it was such a joy to see how much she enjoyed looking at the fish and other sea creatures. Her smiles and joy are always worth the effort. In February 2018, Evie will be participating in the Disney Princess Half Marathon weekend by "rolling" in the 5k with me and another runner. She hasn't warmed up to 5k as much as I would like, but I am confident she will grow into it as we become more involved in Jacksonville. 

We joined another organization called Ainsley's Angels as an Angel Runner and Angel Rider. Evie will also be featured as one of the miles in the Wolfsons Challenge in January 2018. It is a Ultra Relay race and we will be participating with Team Ainsleys Angels (Jax).

Evie became a Girl Scout with one of her best friends and has really enjoyed the experiences. She sold cookies last year, went for a hike this year, and we hope to go on our first camping trip sometime in the next year. It has been such a growing experience for her and the girls in her troop. We always try. What we try may not always work, but we try and so far this is working.

We've bumped into a few local Chivers and I'm always happy to tell them about what their participation has meant for our family. We are also working on our 3rd Power the Flower 5k here in Jacksonville with Ultimate Racing Inc. It raises awareness of Rett Syndrome and the proceeds go towards bringing a communication and literacy workshop for people with complex communication needs to Northeast Florida. It is never a dull moment in our home.

We hope to attend Green Gala next year...thank you again!"