3 weeks post op

Ok, so I know I haven't been keeping up with this blog (I have a really good excuse... once I think of one).  The surgery is over and done with and I am on the mend.  Almost three weeks post op and I feel so much better, I wish I could just pirouette around the kitchen and start dance back up immediately! BUT my doctor said absolutely NO dance for 8 months. Eight months?!? I am going to die from hyperactive suppression! I don't know what will come first, the horrible idea of loosing my splits or death by lack of dancing.  So, as I have spent 3 weeks of the 4 months either by myself or walking laps around the staircase, I have found out things I can't do by myself such as: getting dressed or putting my socks on, standing up from sitting on the stairs (I'm smart, also don't sit on the stairs),  getting my school books out of the cabinet, and washing my hair in the shower (to which I need my lovely sister's help).
Please enjoy the video of my x-ray progression and trip to the hospital.  So much fun!
Started at 20 degrees and ended at 60, and after my surgery it ended up being 19 degrees.

The world is ending and Ellie's depressed!

Well, if I have one more drop of stress added to my life I will overflow!!  I have felt sick for two weeks and feeling sick and life do not mix, so how do you deal with all this life and stress? You cry, a lot.... And whine, and beg for attention, and look on the calendar and count how many days before surgery. Maybe I'm over reacting right now, but back surgery seems like the end of the world.  All this planning of how long will I be out of dance? How long will I be sleeping downstairs? What am I going to do with my beloved loft bed that I won't be able to use afterwards? Just that alone makes me want to cry! I feel as if this wonderful idea of being done with my brace has turned into a horrible nightmare and all I can do is sulk in my pajamas (you can't get me out of them).

Lets talk about dance, I have dance four days a week and thats about 13 hours a week. This includes technique, pointe, pilates, modern dance, and contemporary. Even though dance makes me happy it hurts my back a lot to do some of the things, like holding arabesque back at the barre and balancing, Attitude derriere balancing at the barre, and cambre to the sides and back. I am hoping that after my surgery I will still be able to do the majority of them.
 
This last weekend on Saturday after a LONG day at dance I was ready to have a nice relaxing night with my mom when Ashley (my older sister) texted me saying she was going to my great aunt's 75th birthday party and that she wanted my to go with her, which at that exact moment my grandparents were just walking out the door when I told them. My grandma ran me up the stairs and dressed me faster than I could speak and we were in the car driving to the party in less than 2 minutes.

At the party I was the youngest person there other than a 3 year old boy. I swore that if my sister did not show up after all I would tear my hair out and about three-seconds after I said that out loud I saw her walking down the sidewalk. There is something about being with my sister that makes everything better for the moment and the universe melts into nonexistence along with all the stress. Thank the Lord for siblings because I would be a mess without mine!

On Sunday we went to the Minnesota Renaissance Festival, a family tradition of ours for about 30 years. Even though we didn't do a lot or buy anything, just walking around with my mom after the long break apart was absolutely magnificent! We got to the festival at 10 am and left at about 3pm because it started to rain. By the time we got home I went back to bed and slept for 6 hours only to awaken to being the only one up. I walked down the stairs to raid the pantry because I was starving and found my sister looking guilty as ever eating the last of the mashed potatoes (which is kind of what I had gone down to eat) and not willing to share her treasure with me, I settled on left over kettle corn and potato chips.

Mom's Going to Scotland!

My mom has been planning a trip to Scotland since she went the first time which was like 20 years ago. On August 13 (one day after my birthday) she left on the trip of her life! She got to go to Inverness, Scotland, for 4 weeks. Thats four weeks without my mom, I barely could even do one week at summer camp! What am I going to do? So this trip snuck up faster then we could have imagined and before we knew it my sister and I were with our grandparents and our beloved mom was all the way in... Scotland. Not like thats a bad thing but the last time our mom left it was overnight somewhere and I ended up in my grandma's bed, scared out of my mind. So with the first three nights done and over with and so far only one nightmare about people turning into sacks of flour (don't ask) I think I might be ok.
This week while we go crazy trying to find and sew pointe shoes and freaking out about school, my grandparents have been really nice and helpful with everything stress related. So this Thursday we shall go to the zoo (if it does't rain) and have fun with them like we did when I was little.


All the while my mom has started her own blog called Mom's going to Scotland so check it out because its really cool!

http://momsgoingtoscotland.blogspot.com

Summer Camp!

On Sunday morning we headed to the bus stop (which was at a gas station) and waited for the bus to come.  When the time finally came (we got there an hour early) the big yellow bus came and we loaded up the trailer.  Not many people were on the bus which surprised me because it was a big camp and being the only one at the bus stop I started to get nervous.  I started to get more and more down the closer we got to camp because none of the other girls would talk to me.  By the time the three hour bus ride was up we pulled into the camp parking lot and had to go through a health inspection.   They looked in your hair and collected all the medicine you had and evaluated whether you were sick or not. Once I got to my cabin we had to unpack and meet our cabin leaders, mine was Sync.  She was really nice and I liked her a lot. 

I was starting to feel really home sick and I missed my mom and sister so I was on the brink of tears. By the time supper was ready, my friend Elizabeth had told me that the meals were the best ever so I sat down and looked upon the table and it was.... pizza.... I'm allergic to dairy. That was it, I was a pathetic teenager trying really hard not to cry... over pizza (and failing miserably). So my counselor got up and brought me a gluten free dairy free pizza that was so spicy I couldn't eat it. At this point I was so done I fled the table and ran all the way back to my cabin where I grabbed my fabulous baby food (packed for emergencies) and ate it so fast I'm surprised I didn't choke!  I was so depressed and down because it wasn't what I had expected at all whatsoever! When Wednesday rolled around I texted my sister and my mom and immediately cheered up and was willing to participate in activities (though after this day I swear I annoyed the whole cabin by being too happy). On Thursday we had a rodeo and because I was in the horse program I preformed in the rodeo (we weaved our horses at a trot)! I was so excited I couldn't wait! Our whole cabin french braided our hair and set off down the road to the horse stable and sat on carpet squares waiting for supper to be served! 

Once supper was over, we all gathered around the riding ring and waited for the entertainment. I will admit I was very impatient and wanted my turn to ride to come faster. The horses were very spooked so half of them didn't do what they where suppose to.  When my group's turn to ride came, my horse was the only one not spooked and actually did the formation properly. On Friday we all hugged and said our goodbyes and got back on the bus. I sat with both of my friends and as one fell asleep the other listened to music with me. My bus stop was the first one on the way and by the time I spotted my mom and sister in the car I was once again a pathetic teenager trying with all her might not to cry. Once we stopped I ran off the bus into my mother's arms, sobbing, only to realize my luggage was still on the bus. By the time we got into the car I was so hysterical my mom handed me a piece of bread and I felt immediately better (she joked about me not being able to live without bread because everything at the camp was gluten free and dairy free together so I got no bread) and told her how wonderful camp was after Tuesday.

4th of July!

   For the 4th of July we went with my sister Ashley and her fiancée Zach on our boat for the whole day! It was the most fun I have had in a long time. At first we got on the wrong boat but we quickly realized our mistake and very maturely fled the situation (by running down the dock like madmen).        Once we found our boat and uncovered it and pulled the sunshade umbrella thing out (I don't know what it's called) we got pelted with a bunch of hidden dead and alive spiders and jumped around screaming as Zach tried to get the gas cap on right. Finally everything was set up just fine, spiderless and ready so we untied the knot holding the boat to the dock and set off on an adventure! We sailed around White Bear Lake for 5 hours, dropping anchor on a sand bay across from where the boat slips were and swam around for hours even though the day wasn't particularly sunny or warm. On the way back to the slip the boat stopped working in the middle of the lake because my sister was trying to fix the radio that mysteriously stopped working (I was the one blamed even though i had't touched the boat). After about five minuets of fussing and panicking we got the radio to work and found out we had only turned the key the wrong way.
   After we pulled the boat back in, we drove back to the house where we grilled kabobs and debated with my aunt about what to do for the fireworks as some of us wanted to go watch them on the boat and others wanted to just go down to the beach (going to the beach won out). After we ate we packed up the car and drove back to the lake to watch the fireworks (only after that did we realize we  forgot to cover the boat back up, even still we did't bother with it). The next day we were picked up early in the morning by our sister and her fiancé to drive to the place to meet up with our mom to go home (only got lost once) and said our goodbyes. Once we got home we watched movies as a major storm went on around us-knocking out the power for hours as a tornado tore down all the power lines. The next day I came down with a fever and slept two days in a row. I would have to say this is the one time we didn't get the "you need to be nice to your sisters because you only have them for so long" talk.  I don't even know why they give us that talk because we always get along.  I would say that I have the best sisters in the universe! Maybe it's just a joke, but who knows.

June and July

Now over a month later and with summer camp only two weeks away, we have found out the date of my surgery, which is scheduled at 8:30 am on December 8 with an acupuncture appointment in the pre op room, I think I'm all set to be fixed. My acupuncture doctor, Dr. Schwantes, said that he would come in before my surgery to do a needle pattern to calm me down and another one after my surgery if needed.

Because I am so active at home and bored all the time, my mom decided I should start dance again (classical ballet). So I will either start with summer or fall semester.  I am really nervous because its been a little over a year and my back doesn't move like it used to, but I really hope I'm put at the same level that I was at when I quit. I am also worried that after my surgery I won't be able to dance the same as before (even though my doctor says I will). I am planning to dance all the way up to the day of my surgery to contain all my strength and flexibility so I shouldn't loose too much of it in recovery later.

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.