Elena playing piano

Mar 12, 2021 / Prosthetics & Orthotics

Share Your Story: Not the Only One

Meet Elena, a patient seen by our multidisciplinary team of experts. Learn more about her journey below.

Blog written by Elena's mom, Brittany, of Temple, TX.  

We came to Scottish Rite because one of Elena’s legs was locked in a permanent 90-degree angle. We initially thought that it might be able to be straightened, but after many X-rays and discussions with Dr. Johnston, it was clear that we had a choice - a lifetime of surgeries, pins, rods, wheelchairs and questionable success at straightening her leg or amputate and within a few months give her the opportunity to stand, walk, run and be a kid. We cried, prayed and believed them when they said that she would be able to have a more normal life with a prosthesis and we are grateful for that decision. 
We first met Dr. Johnston in the fall of 2014. Elena was barely 3! He spent time describing and investigating her situation. We didn’t know “why” her leg was bent, and still don’t, but we got to the place where we all believed that it wouldn’t be the best or most effective choice to leave it that way. He and nurse Sherri answered all of our questions and gave us advice and recommendations but let us walk through the decision process. Sherri and April (another nurse on the team) were so helpful and encouraging and they answered more of our questions. They shared past experiences of patients (anonymously) and shared their wisdom from having walked through hard journeys with families over the years. They were sensitive to Elena’s heart in all of it. Between Dr. Johnston’s and the rest of the staff's wisdom and experience, we felt confident in the decision path. 
We decided on the amputation route and had a great experience in the hospital—the nurses and floor staff were so amazing. I stayed with her throughout it all and her dad came back and forth every day. 
When it came time for her prosthesis, we had another long stay. It was truly a wonderful gift to be able to see the Prosthetics team, check in with Dr. J as needed, see physical therapy, occupational therapy while allowing Elena to practice getting around on her new leg. We spent lots of time walking the halls and on the playground. Over the years, Elena and Dwight (Elena's prosthetist) have developed a sweet connection. Elena knows that Dwight will work to find solutions to her challenges and always figures out how to help her do what she wants to do. 
Another part of her journey is one that is ongoing – scoliosis. Dr. Johnston oversees that as well. While she may love her leg (most days) and the life that it allows her to have, she can get frustrated with her brace and the unpleasant prognosis we have there. This has brought an additional layer of challenges, regarding wearing the devices and discussing treatment. Kevin, Dwight (in O&P) and Dr. J have all worked with us on this piece of the puzzle. It is somewhat of a medical balancing act – treating her scoliosis without taking away all the mobility that she has with her prosthetic leg.
Elena loves to play outside with her cousins and friends. She loves to snow ski and swim. She loves to read and do gymnastics (she’s on a level 2 team) and plays the piano. She listens and understands her situation—she sometimes listens to the doctors and fellows more than I wish she did!
Prior to COVID, her four siblings would love to come and visit during her inpatient stays or even just tag along on a clinic appointment. All of them have spent time with Elena in the rooms, looking through the kaleidoscope, playing on the playground, eating Stefan’s pasta in the cafeteria and enjoying popcorn together! The emotional hope that Scottish Rite has provided for our entire family is tangible. Her siblings know that Elena is safe and having fun and in a good place, even if they aren’t always sure about what is happening medically. If Elena is ever having a hard time, they support and remind her of the fun things that lie ahead for her.  
If I ever talk to other families about Scottish Rite for Children, I always tell them to COME! There is no place like it. There is something incredibly special about Scottish Rite and the doctors and staff here. Not only are they experts in their fields, but they have a sensitivity to children and parents who are navigating hard and painful decisions and life realities. They make you feel like you are not alone and it’s a place where hope happens. We couldn’t recommend it more highly. It has changed all our lives by giving our child the ability to have a thriving active life to the best of her ability. 
It is hard to put down just how much Scottish Rite has blessed our family. It is a place that has provided hope and encouragement and when we walk inside the doors, we know that we will find answers to any of our challenges. I believe Elena says it best,

"I like being at Scottish Rite because when I'm there, I'm with other people who are like me - people who have a prosthetic arm or leg or people who wear braces. I'm not the only one when I am at Scottish Rite." 



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