To All-Thank You
Friends and Family,
Thank you from the bottom of our hearts for all the love and support you have given and continue to pour out on us. We are beyond blessed. We wanted to pop in and not only thank you, but give you a little update on the girl we all love so much.
We started out the year believing for breakthrough for Evie, and it came, just not in the way we thought it would. Our summer was a bit of a challenge being that all of Evelyn’s symptoms compounded her mind and body and landed us in the hospital. Since then we have stayed out of the hospital and received an official diagnosis for everything she has been dealing with these almost four years and continued moving forward.
Evelyn has continued to attend her beloved pre-school program, at our neighborhood elementary school, alongside her most patient and nurturing teachers. As we have all needed to do since receiving Evie’s Rett diagnosis, her teachers have adapted her environment and tailored her everyday routine to best suit the many nuances of her disorder.
Evie is receiving physical therapy and occupational therapy each week, while in school, and additionally, due to your many contributions for Evie we have been able to get her supplemental physical and occupational therapy at a local clinic. The goal of all these therapy sessions is to help prevent any further regression in Evie’s ability to walk or use her hands and hopefully regain skills once mastered. We are in process of getting a new pair of ankle orthotics made for Ev. These are meant to stabilize her more while she walks and hopefully give her more confidence to navigate new environments on her own.
Through our relationship with other Rett families we were made aware of arm braces specifically tailored to help control the involuntary, and debilitating, hand-to-mouth movements that our girl has been doing for about a year. The difference these braces have made in Evie’s everyday life is incredible. Not only are we able to see her beautiful smile more clearly, but her hands and face have begun to heal and she has become a lot more vocal with her sounds and laughter. Her focus has gotten better, her arm control has improved greatly and her anxiety had been reduced significantly.
As we look ahead into the new year our hope is to be able to continue Evie’s therapy on a weekly basis, strengthen her walking and find a way for our girl to better communicate with those around her-through the use of assistive eye gaze technology. The school system currently has her enrolled in a 6-8 week trial to see if she will qualify for her own device to use throughout the school year-to take home with her to use in the evenings, weekends, and any school break. (This would be a huge blessing since to get one of these devices on our own would cost us well over $16,000…insert big sigh here).
Evie is the epitome of resilient, despite her body working against her mind. Her joy has never once wavered. Even on the hardest days you can find her smiling through it all. She is truly a wonder and because of your generous support and unceasing love and prayers we are able to provide our girl with the best life possible.
Until she can,
Stephen, Carolyn, Evelyn, and Ellis