Share Your Story: Hole in One

Share Your Story: Hole in One

Meet Phoebe, a patient seen by our spine experts. Learn more about her journey below.

Blog written by Phoebe’s mom, Victoria of Rockwall, TX.

When Phoebe was in sixth grade, she had her annual pediatrician visit and that was when our doctor first recommended further evaluation of her back. Phoebe’s shoulders were uneven, and she appeared to have an abnormal spinal curve. Our pediatrician recommended that we go to Scottish Rite for Children.

Phoebe became Dr. McIntosh’s patient and due to the degree of curvature in Phoebe’s spine, a scoliosis back brace was highly recommended and necessary to stop the progression of the curve. As a mother of a beautiful, young and active daughter, the news was a hard pill to swallow. We were very nervous and afraid of how the brace was going to impact our daughter’s lifestyle. Dr. McIntosh was very understanding and thorough, answered all our questions and made us, especially Phoebe, feel comfortable.

Dr. McIntosh is an expert and we felt confident that our daughter was in great hands.

That same day, we met with Kelsey in the Prosthetics department. She took measurements and designed Phoebe’s back brace. Phoebe loved all the staff and doctors but felt a special connection with Kelsey. She was funny, young at heart and spent a lot of time with Phoebe during the brace adjustments.

At that time, Phoebe was 11 years old and about to transition from elementary to middle school. It was hard to see her wear a thick plastic brace during the hot 100+ degree weather. Phoebe has always been tough, and she rarely complained. She didn’t like the brace, but she knew that it was the only option to stop the curvature progression. Many times, she would even wear it for more than the 20 hours a day that was recommended. She started with a 19-degree curvature and at the end of the process, she was at a 17-degree curvature, which was great.

As a family, we did different activities together and allowed Phoebe to try many different sports. Phoebe was able to play soccer and basketball, run track, and even participated in cheerleading – all throughout her bracing process. Dana Dempsey, the Scottish Rite Director of Therapeutic Recreation, invited us to participate in a Learn to Golf clinic. It was at this clinic when Phoebe decided to try golf and she fell in love with the sport! Through the years, she has participated in several different Learn to Golf clinics and is now on the varsity golf team at her high school. She even made the varsity team as a freshman!

We are beyond grateful for all of the staff and volunteers at Scottish Rite. Phoebe’s scoliosis experience was much brighter due to the care and love she felt, and we strongly recommend Scottish Rite to anyone else that may be going down this path.

Learn more about Phoebe’s Story and see how Learn to Golf changed her life. Click here.

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Share Your Story: My Bracing Journey

Share Your Story: My Bracing Journey

Meet Mary Grace, a patient who is treated by our spine experts. Learn more about her journey below.

Blog written by Mary Grace, of Dallas. 

The first time I was told I had scoliosis was at my check-up when I was 11. I was in the fifth grade, an avid dancer and involved in choir and theater. My mom and I went into my appointment clueless of what was about to happen. Everything was going normal until my pediatrician asked me to touch my toes so she could check my spine. She was silent for a few seconds. “Umm… hold on,” she said. She brought in the other pediatrician to also look at my back. They discovered that I had a curve that was visible to the naked eye. This was not the kind of news that my mother and I were expecting to hear. We were immediately referred to Texas Scottish Rite Hospital for Children. I felt a rush of emotions – I was confused, scared and shocked. My mom told me, “Don’t worry, Scottish Rite is the best of the best and they will take great care of you.” I didn’t know it at the time, but my mom was right. Scottish Rite Hospital would later go on to provide me with five years of the best possible care.

patient smiling
A month later, I had my first appointment. We pulled into the hospital and I was immediately at ease. It had a bright, cheerful looking playground and big crayons framing the doors. Once inside, I was overwhelmed with the delicious smell of popcorn. It did not look or smell like a hospital. First, I was taken to get an X-ray and then we were put into an exam room. None of the rooms had numbers or scary names on them and I didn’t even see the words “scoliosis” anywhere. Instead, the rooms were named after fun kid things.

I immediately liked my doctor, Dr. McIntosh. She was kind, smart, fashionable and also a mom. She immediately connected with me and we began talking about our lives. After getting to know each other, she told me that I had moderate scoliosis. At that point, my curve was less than 20 degrees. I was told that for now, I only needed to be seen every six months for scans of my spine to make sure the curve wasn’t progressing. I visited Scottish Rite Hospital the summer before my sixth grade and during the middle of that year. Both times, the curve had not progressed. In fact, they told me that after my next appointment, I may be done with my treatment forever.

My next scan was scheduled for July, when I was going into seventh grade. I wasn’t at all worried since my three previous visits had all been uneventful. I had my scan and waited for Dr. McIntosh. My mom and I talked in the spacious patient appointment room, completely unaware of the impending news that would change my life forever. What happened next was shocking! The door opened, and it wasn’t just Dr. McIntosh, but a team of at least four people. Dr. McIntosh informed me that my scoliosis had progressed significantly in the past six months. My curve was now 28 degrees and I needed to be fitted for a brace right away. My mom and I both fought back tears as we were sent downstairs to the Orthotics and Prosthetics department. Our specialist, Kelsey, could not have been more kind or encouraging. She formed personal connections with me from the second she walked through the door. After a few more orthotics appointments, we even developed our own inside jokes. She scanned me for the brace and told me lots of encouraging stories about other teenaged girls who wear braces. We were instructed to come back in three weeks when my brace would be ready.

Three weeks later, I was back at the hospital to get my brace. Although it was fitted and made just for me, nothing about it felt normal. It was big, hard, very tight and even with the medical tank tops underneath, it rubbed my skin. Kelsey in prosthetics was incredibly kind and patient with me. She had me walk the halls of the hospital, practice sitting down, standing up, etc. while wearing my brace. Then, I would report back to her about where it hurt, and she would make adjustments. Sometimes I couldn’t even articulate exactly what it felt like, but she worked tirelessly to try to make that brace as comfortable as it could be. After a long day, I left the hospital feeling upset while I carried my brace in my arms because I had to work up to being able to wear it for long periods of time. I could not believe that this was going to be my new normal for the next few years. In the hospital parking lot, I saw a girl about my age who was also carrying a brace. She noticed the brace in my arm and walked right up to me.  She said, “Hi, I’m Cadence, I’ve worn a scoliosis brace for the past six years. I can give you lots of tips.” She then proceeded to tell me how she managed to stay cool in the brace at night, which undergarments worked best with it, how to adjust the tank top straps to fold over the brace to work with certain outfits, etc. Cadence was so optimistic and said all of this with a big smile. I thought, “If she can do this and still smile like that, I can do that too.” Cadence and I became pen pals and regularly texted about our scoliosis. When she came to Dallas a few months later for her scoliosis surgery, I came to visit her at the hospital.

I continued to wear my brace throughout middle school. It wasn’t easy and it wasn’t always comfortable. However, Dr. McIntosh, Kelsey and every single person I interacted with at the hospital made this journey as wonderful as it could be. 

They cheered me on, they listened to me and they offered support. 

Like Cadence, I too have been able to help younger girls with scoliosis. I like being able to share my experience and cheer them on. I smile and visit with every single person I see holding or wearing a brace in the halls. Since I am now fully grown, I no longer have to wear my brace. There is a chance I will need surgery down the road for my scoliosis. I hope not, but if I do, I know I will be in the best possible hands at Scottish Rite Hospital.

cheer dancer

While I didn’t wish to have scoliosis, the experience has made me stronger and helped shape what I want to do with my life. My journey at Scottish Rite Hospital and with Dr. McIntosh has made me want to be a doctor. I am beyond thankful for the hospital and the amazing people who work there. They have provided me with so much (including my “bionic” torso as my mom and I call it). Once you experience the community and people, you immediately want to become a part of the family. It is a special place that makes everyone feel welcome and supported. Scottish Rite Hospital has taught me that with a strong support system, coupled with a positive and open mindset, anything is possible.

 

DO YOU HAVE A STORY? WE WANT TO HEAR IT! SHARE YOUR STORY WITH US.