Back Braces, Childrens Hospitals, disabilities, disabled, hospitals, Kyphosis, medical, Physical Disabilities, Scoliosis, Shriners Hospitals, Shriners Hospitals for Children

Scoliosis Journey: Becoming a Shriners Patient, back braces, and possible child abuse?

It was on a trip to New Orleans Children’s Hospital for an orthopedic doctor appointment we were stopped by state police for speeding. Never before in dad’s life has he ever gotten off with just a warning. The officer was a Shriner. He gave his business card to my parents and told them about the wonderful work of the Shrine Club, which is free to families. After a few more visits to New Orleans doctor, they decided to get a 2nd opinion. My parents wanted a 2nd opinion because the private physician kept changing his mind about when surgery should be performed. I was starting to pull up. He bounced back & forth as to waiting until after I started to walk or before. They didn’t feel he was confident about what would be best for me. Mom called the local Shrine club; 2 very nice gentlemen came out the following day with paperwork and took pictures of me. Shortly thereafter I became a Shriners Hospital for Children-Shreveport patient. Shrine doctor decided it would be better before I started walking. Why wait? It had to be done anyway. Mom and I went to Shriner’s Hospital in Shreveport, LA a few days before surgery. Surgery was done at Christus Shumpert. I had to stay on my back in ICU for a few days. My parents had a room in the hospital with the freedom to come into ICU anytime to see me. The 1st night after surgery, I rolled onto my stomach and got up in crawl position just as mom walked into the room to check on me. I was being monitored in the nurse station. My nurse came running into the room to put me on my back; Even back then, I was such a little rascal and terrifying the nurses! LOL. After a brief time in the hospital, I was discharged with a cast around the torso area. The cast had a hole in the stomach area around the belly button. I complained about itching inside the cast. Dad would vacuum inside the cast using the long nozzle.

Shreveport is about a 3-hour drive from my home. I remember those trips to Shriners Dr. appointments so well because they were so memorable. During these trips, we had a tradition of going to the mall down the road afterward for Lunch at Piccadilly and then shopping; I especially loved going near Christmas time or Valentine, because I could get holiday shopping done.

Since it was a 3-hour drive, we often left my house extremely early; sometimes when I was much smaller: I’d pack a bag the night before and my parents would just load me up while I was still asleep in the morning. I was so small, I could slink down out of sight and change in the backseat of the vehicle. We’d often stop at McDonald’s to get breakfast; which mom and I often split the “Big Breakfast” and if there was time, she’d let me play in the playground for a tiny bit. Upon getting to Shriners Hospital, Mom and I would go sign in, and then I’d run off to go play in the waiting area and, of course, make new friends with other children. As I got into the preteen years, I no longer wanted to play with the pretend kitchen set, and would watch the movie they had on or go on the computer to get on Myspace or whatever; sometimes while waiting, I’d go to the cafeteria area and get popcorn or a cookie or a soda.

Once they called me to the back, we’d go straight to “weighing” and then to X-ray. I remember when I’d get weighed, they would often tease/joke with me because I hadn’t gained much in 6 months and they’d jokingly ask “does your mother feed you?!” To which I would laugh and say “yes, I eat like a horse; it just doesn’t stick to these boney hips!” (I also had really bad stomach problems so everything would pretty much go right through me.) In X-ray, I knew the routine of how they wanted me to stand: Back facing them, arms wrapped around something a metal box thing, feet slightly apart. I always got stickers and a stuffed animal/toy if I behaved in X-ray right away, instead of sometimes being mischievous and acting like I didn’t know the routine. After X-ray, it was to go bring my X-rays to the nurse/doctor meeting lounge area and then go sit up front and wait to be called back to be put in a clinic exam room to see my Dr.; Dr. Richard McCall.

Upon getting placed in a room, there wasn’t much to do in the room and sometimes he would take forever, so I’d go in the hallway and peek into the nurse/doctor lounge and giggle, spying on them while they looked at patients’ x rays, playing peek-a-boo: hiding when they’d look my way; Sometimes, I got caught by the nurses/doctors eyesight, but half the time, they’d just play along. I could always tell which X-ray was mine and I would sometimes go right up behind Dr. McCall while he was looking mine over and I’d point out “that’s mine!” and would trace the curve outline with my finger: He was so patient with me and my fascination; he’d sometimes sit me on his computer chair, and show me where the Scoliosis started and his ideas for future surgery “Once you go through puberty, “ yadda yadda yadda, a plan that never went to full fruition during my Shreveport checkups because my body had waited so long to “go through puberty” and the risk of paralyzing me was too great according to him when they discharged me at 17.5 years of age.

I remember one time, I think it was coming back from a checkup appointment, I for some reason stuck my head under mom’s driver seat of our Ford truck; she had to pull over because I got my head stuck. Why was I such an odd child?

I had to wear a body brace due to my Scoliosis. For those who do not know, bracing is sometimes a treatment for Scoliosis patients. I had to wear my brace from 2 years of age, until 8 years of age, when the doctors decided the bracing wasn’t helping; it might’ve been because I’d “pull a Houdini” and escape out of it. I despised that brace: it was hot, itchy, and so uncomfortable; when I’d take it off, I would scratch my itchy body for like 15 minutes straight. The undershirts for the brace, that were supposed to help, didn’t help that much. The only reason I liked my brace was that I had protection if someone hit me in the stomach area and because I had a place to put all my stickers. The worst part of the brace beside the itchy hotness of it was being molded for a new one. Being molded for a new brace was the worst because they use plaster of Paris or something like that to make them, and when they mold your spine, it gets hot and burns: I only remember being molded for a new one, once; I cried and screamed, throwing a tantrum, saying I hated them, until afterward when I got a toy to cheer me up; I named the doll “Cynthia,” because I was obsessed with Rugrats at the time, and it looked like Angelica’s Cynthia doll.

It didn’t do much good for me, so I was able to discontinue the brace after age 8. I had lots of memories of my brace.

There was a “game” I liked to play with my mom. I called it “Suitcase game” where mom would hold me by the straps of my brace and swing me in the air like I was a suitcase. How anyone never called child protective services, I will never know. Another memory was one of my mom’s favorite memories of me in my brace. They had Velcro straps on the back of it and Mom thought it was out of my reach. This memory shows another factor in my determination. We happened to be going somewhere and I was asleep in my car seat. Mom says I sat up in my car seat, eyes still closed. She says I reached behind myself, undid the Velcro straps, then proceeded to stick my arms into the brace, and push it away from my body; Escaping out of it. She says, before that happened, she would not know how I’d escape out of it because I would be put to bed in it, and when she’d come in the next morning to wake me up, I was out of it. Now she knew; somehow she always discovered any of my secret tricks! I eventually always got busted! HAHA!

I didn’t like my brace because when it was very hot outside, I would sweat and it’d start to itch, but other than that it didn’t bug me that much, except after eating because I always had stomach aches after eating. I did however like it whenever my body would get put in dangerous situations: my brace would’ve protect me: When I fell and knocked out my front teeth, I didn’t hurt my back because I was in my brace; When I had a girl that thought I was a baby doll and would carry me around, she dropped me one day, the only thing that got hurt, was my butt because my back was protected by my brace. Even though I hated it as a child if I had it on maybe I wouldn’t be so achy all the time now. I don’t know, just kind of wish I didn’t have the aches I am having now—Old Age Sucks!