2015-2016

2015 ended up being the most fun I have ever had. My growing was starting to slow down so I was only wearing my brace about 15 hours a day. In June my mom told us we were going to Kentucky... TOMORROW. We packed up as fast as we could and took off on the longest 15 hour drive ever! We went on the trip my mom was dreaming of for 20 years, and drove to the Creation Museum. It was so much fun that we planned to go back in two years!

A few weeks later my sister turned 16 and she had the craziest 'Alice in Wonderland' costume party ever (our big sister Ashley even showed up)! At this time my cousins from Florida came over for a month long visit (I haven't seen them in five years).  The youngest of the Florida cousins, who is nine, also has scoliosis.  She showed me her brace and it was so tiny, it made my frankenstein brace look like a real monster brace! 

In August when my birthday came around we were really busy so we had a cake and presents before the movers came (we bought new furniture). My sister and her friend bought some fabric for a cosplay photoshoot and asked me to make the costumes for them and in exchange, they would take me around the mall in cosplay.   It was a lot of fun! Now we go to normal cosplay conventions whenever we seem to feel like it.

When the school year came, we started something very different from normal, we went to a new charter school that just started out in the woods. I made some friends and even though the school didn't work out, we still had a ton of fun. After we dropped the charter school and started up with our normal home school, I ended up contracting Mono (thank you charter school!) and slept for about a month and a half straight. After Christmas we decided to try normal public school (I don't know why exactly), but going to the high school didn't work out, either.  Now we both are back home doing our homeschool like we had my whole life.

By the time my next checkup for my back came, I had been out of my brace for 5 months and was in a lot more pain then I should have been (I started up with physical therapy for my back until my appointment). When the appointment finally came, my back had gone from 51 degrees to 56 degrees and the doctor said I needed surgery to correct it, but he told us to go to a pain doctor before we scheduled the surgery. In the mean time, my mom had wanted to send me to summer camp this year but we couldn't decide anything before the appointment so we had to wait and see then. We went to the pain doctor and he said the pain was mostly in my head, but he could do acupuncture for it to see if that helps. Almost a month later, I have been stuck with pins, and am almost ready for summer camp!

So now you have caught up with my life in the present, I'm a fourteen year old girl, who is homeschooled and in 9th grade, with a very crazy life. 

I can't wait to see where it goes next.

Over The Years

Over five LONG years and about 8 braces later, my curve had gone from 26 degrees to 51 degrees.

By 2015 I was five-foot-six, fourteen years old, and quite tired of my brace, but in December my doctor said the one thing I was waiting to hear: "You are done with your brace because you have stopped growing!"  I was so happy, I danced through the front door and announced it to all of my family.  They cheered and even got me a cake (I still have my brace and don't know what to do with it)!  

Because I continued to grow rapidly right up until I finally stopped growing, I outgrew my last brace about six months before I was done wearing it.  Instead of making me a brand-new brace to wear for half a year, they cut open and glued back together my current brace with spacers so I could continue to wear it.  It ended up being too wide, and by the end of my time in my brace I had contracted Mono as well,  so I lost a lot of weight and it was even bigger.  When my doctor saw the final product, he actually laughed at it and called it a "Frankenstein brace."

Frankenstein brace

During my time in my brace, I went through a crazy time in life, and had lots of fun, enjoyable times as well.  I loved all the funny looks I got from my brace and loved all the attention. I would wear pants or skirts over the brace and just the brace undershirt and my brace because of the panel over my stomach that velcroed onto my brace (you can see the velcro in the picture) that would rip my shirts apart. (The panel kept my rib cage from bulging out of the brace)

In 2014, I took a break from dancing and continued my life in a sad attempt to be normal.  Now I find no point in being normal.

Into The Brace

After my first appointment, my doctor told me to start a core strengthening activity, either karate or dance. Right before we went to that appointment my mom took me to the Nutcracker and I loved it so I decided on dance. My first ballet class was very interesting because I was and still am very clumsy and was the only kid in the class who had no dance training beforehand. I still had a lot of fun though and continued dancing for the next 6 years. Unfortunately my back got worse and worse until it reached 26 degrees in 2011. A new doctor came in and told me I needed to get a back brace to hold my spine in place as I continued to grow.

We met Corey, he was the orthotist who made my brace, at first I was really shy and he was funny and really nice.  He took a bunch of measurements of my back, and then I had to wear a long body sock that he molded plaster around. He used the plaster mold to make the brace, a process that took about an hour, and then I got to pick out a pattern to put on the brace (I chose the blue butterflies and a ballerina sticker).
 He told us that he would call when the final brace was finished.

About one month later he called us and we went in to get the brace fitted properly. We had to stay there for over six hours to get it fitting comfortably. He told us to go eat something and come back in an hour to see how it fit walking around. My mom, my sister, and I all went to Arby's and I was having a lot of difficulties walking around and sitting. When we first got into the car I couldn't get in easily and when I eventually got in I tipped over, my mom and sister started laughing at me and I couldn't sit back up so I started to cry, they had to pick me up and help me a lot through the process, but soon I got used to the way it felt.
I was supposed to wear my brace 23 hours every day but I couldn't because I had dance about 2 hours several days a week. I was really worried that the kids would make fun of me because of it but thankfully they didn't. Everyone thought my brace was really cool and Corey even made a brace for my doll!

Dr. Novacheck told me the brace would last me about two years.  Because I started growing like crazy for the next five years, my first brace lasted me about nine months (I think the longest I've had a brace was 1 year).  During this time,  I was slowly improving my dance skills and moved up from the pre-ballet class to level 1 and was the first person in my class to get all of my splits. I did one spring performance in 2010. I was a flower and a firefly. I was also in the Nutcracker and got to be a gingerbread cookie (because we forgot to go to the audition). I worked my brace in around all my dancing and sometimes I would put it on for harder combinations because my hips and ribcage were not centered so it messed up some of the turns I had to do.

First Back Appointment

When I was 8, one year after we found out that I had scoliosis, we got an appointment at Gillette Children's to see what scoliosis actually was. I had to get two x-ray pictures and went to see what the doctor had to say. I had two curves in my back making it an S curve, the top and bottom curve were both 20 degrees. She told us that at some point in life I might need a TLSO, which is a back brace that holds my spine in a position to stop progression.  Sometimes it works and sometimes it doesn't.

In The Beginning...

This all started with a trip to the emergency room.  When I was 7, I got the flu and had to get a chest x-ray to see if I had pneumonia. The x-ray technician pulled my mom aside and told her I didn't have pneumonia, I had scoliosis.