Monday, March 14, 2011

florida, baby.

It started on an airplane.
I don't think Kayla was ready for this one.

We boarded the plane, where we left snow, ice, and 15 degree weather.
And got off to this.

The first few days were spent at the hotel, swimming and tanning in the glorious Florida sun. Oh, and shopping of course. Then was the Superbowl. And we are alllllll for the Packers (and not just because they're the champions). We were about the only ones at the hotel wearing Packer apparel. And we wore it with pride.

After deciding that you can't go to Florida and not visit the beach, we drove down to Cocoa Beach.

Hearing that the weather was supposed to go downhill, we made the decision to go to Disney's Magic Kingdom for the day. I hadn't been there since I was about 6 years old and I loved it. I could ride Space Mountain all day.

Loving the sun too much to leave after just a week, we extended our vacation three days longer than originally intended.

 After sorting out the car rental and flight situations, we left our hotel (my favorite) and drove down to Ft Lauderdale where we spent two nights, walking downtown past all the small tourist-y shops and beach themed resturaunts, and shell-searching on the beach.
Our second stop was Daytona where we shopped at a wonderful mall near Miami (quite a trip to get there), attended the Bud Shootout race, considering it was the week of the Daytona 500, and drove on the beach.
Even with the extra days, it wasn't a long enough vacation for me. I miss the Florida sunshine, visiting new places, and the sand between my toes. But I also missed my house, my friends, and my own comfy bed.
So I was glad to be back, but I would jump on a plane and do it all again in a heartbeat.

Thursday, January 20, 2011

physic, florida, and the future.

Just a short quick post to fill you in before I head to bed (finals week, yikes!)
Today I got a few different exciting pieces of information. First, my mom, my neighbor, and I went to see a physic to see what he was feeling about the upcoming visit to St. Louis. He said this is the doctor I need to see, he was sent here to do this. And that he sees me completely healed after the surgery, 100% better. He said the surgery will be sometime this year because of my breathing problem. It's urgent. I'm even more anxious now to get to St. Louis and see what he has to say. March 31st can't come fast enough.
I also found out today that we're making a week long trip to Florida in about 2 weeks! I'm so excited and can't wait!
I'll update more later :)

Friday, January 14, 2011

catching up.

It's been a good 2 or 3 months since I've written last and I finally have the time/ambition to catch you up on what's happening in my life. Thanksgiving, Black Friday shopping, and best of all, Christmas have all past (obviously) so now things are slowing down and my schedule has been consisting of school, school, and more school. I'm so ready for spring break.

At my last doctor appointment regarding my scoliosis, my doctor discovered that my kyphosis (a type of scoliosis) is getting worse. My spine is continuing to grow, when it is not supposed to, and curving still as it grows. This puts pressure on my spinal cord, and eventually will/could damage it, paralyzing me from the neck down. My doctor referred me to a doctor in st. louis, known as the best spine specialist in the country. Because of my muscular dystrophy and other complications, any procedure I might have involving my spinal cord has serious risks. We researched the doctor online and he looks like a great doctor. He's even cured some patient's scoliosis. Cured. That's huge to me. I'm hoping he has some optimistic views about another possible surgery for me that will almost totally straighten my spine. And because he is the best in the country, he's super hard to get a hold of and very busy, so the earliest appointment available is March 31st. But we'll take it; I would wait years for a life changing surgery like this.

I'm a really impatient person, especially when it comes to things like this, so waiting will be hard but I can do it. I'm eager to find out what they can do for me. When I think of the possible surgery, I feel excitement, nervousness, joy, anxious, happiness, worried, and every other emotion you might feel when you could have a risky, life-changing operation. But most of all, I feel like this could really help me. And I can't wait.

Wednesday, September 29, 2010


Last weekend was the homecoming dance. This means fancy hair, painting nails, dress shopping, homecoming king and queen, carefully applied makeup, and pictures.

There was tons of stress in finding a dress <-hey I'm a poet and I didn't even know it ;)  I'm very picky when it comes to dresses. I have to like every single thing about it, from the length to the style, to the colors to the details. And then you have to add in the fact that I will probably need it altered. Last year, my mom made my homecoming dress so I got to design it myself.
This is the dress she made from scratch. Impressive, right?

This year, she wasn't feeling it. I've looked online, in stores, every where I could think of. I found the perfect dress online. The only problem was I could not figure out where to order it. I searched and searched until I finally found the site the picture was from. Except they only had it in red, not charcoal gray like I wanted. By the time I decided the red was cute too, we didn't have time to order and alter it. So we went shopping.
I found my dress in the place I least expected too. I found it in Target. I wasn't in love with it when I saw it. In fact, I bought it because it was the only semi-decent dress I'd found that day and it was cheap. But as I got ready for homecoming, I realized I actually loved the dress and was glad I had bought it.

Monday-Friday: Homecoming Week
Friday: Homecoming Football Game
Saturday: Homecoming Dance
It was a very homecoming-ish time :)

Tuesday, September 28, 2010

picture this.

Photography. I love taking pictures. I love coming up with the ideas. I love looking at pictures.  I just plain love photography.

Not-so-angelic halo

When I say halo, you probably think of a beautiful, glorious angel with a bright, shining gold ring on their head. Sounds like a halo is a good thing, right? Well not the kind I had.
When someone says halo, I think of screws, needles, and pain. When I was in 3rd grade, I was scheduled to have a "surgery" where they would install a halo on my head (no, I'm still not talking about the good kind). I remember my parents reassuring me it would be okay and not hurt because that is what the doctors told my parents. We walked into the hospital and were sent straight to a room, which we thought was weird because normally you go into a surgery prep room first. Two guys came into the room. One was big, nervous-looking and carrying a briefcase. The other I don't remember much because he was just a helper. My mom and I call the big guy "The Torturer". The Torturer  had me sit on my mom's lap on a chair. He explained what he was going to do- inject numbing medicine and then begin and it wouldn't hurt a bit.
When I saw the long needles, I got nervous but was able to sit still while he injected them into the six pin sites. We waited for a few minutes for the numbing to kick in. And then he pulled out the screws.
He lifted one up and begin drilling it into the first pin site on my forehead. Yes, you read that right, forehead. It obviously hurt like you couldn't imagine. The numbing injections that also hurt did not help at all. I remember the crank of the tool he used and the crack I heard when the screw chipped my skull. And I was sitting there, blood dripping down my face, crying but sitting completely still as he asked. My parents were horrified. This was not what we were expecting at all.
While the Torturer was still working on the first screw, his helper got started on the second of six screws, this pin site located in the back of my head. I remember thinking of any possible way I could escape this situation, out the window onto the tree outside, out the door, anything. I remember the Torturer telling me to "hold still, there's a lot of blood". I remember sobbing and begging the Torturer for a 5 minute break. I remember his response "you can have a 5 second break" (see why we call him the torturer?). I remember my parents saying "no, you will give her a break until we talk to a doctor and get her put to sleep to finish this". And I remember the extreme relief I felt as I was allowed to go to the hospital bed and get away from the Torturer.
My dad told me I could get a cat when I got home because I have always wanted one and he thought I deserved one after what I went through. There were a few unused screws on the bed and we took one to bring home and save as a "souvenir". The tip of the scew was so sharp that it hurt to touch your finger to it. We finally got a doctor in the room and I don't remember much because I was so out of it. I do remember the doctor talking to my parents and saying we needed to wait to put me to sleep to get the okay from my doctor who was in a different building nearby.
My doctor didn't even know I was at the hospital, let alone getting the procedure done while I was awake. I finally got the okay and was put to sleep for the surgery. I was told I was still twitching even in my sleep as they screwed them into my head.

The screws were attached to a halo-like metal rod that were then attached to weights off the end of my hospital bed for a week. Since I am so lightweight, the weights were pulling me off the bed and I had styrofoam boots made and attached to weights at the end of my bed. Basically, I was being stretched out.
After the week was up, the halo was attached to a plastic vest by four metal rods. I was to wear this for 3 months. I couldn't turn my head, I could only turn from the waist up. I stayed home from school for the 3 months because I didn't want to go to school and stand out.
After the 3 months, I had surgery to have the halo removed and then had to wear a neck brace for a few weeks while my neck got used to supporting my head again. The purpose of the halo was to straighten out my neck and my posture, which I don't think it helped very much.
I remember that the pin sites on my forehead scabbed over and when I would pick the scabs off, the end would be pointed because of the open hole in my forehead. I now have 2 scars on my forehead that are barely noticeable and you obviously can't see the 4 pin site scars on the back of my head because of my hair.
Ever since this experience, I've been afraid of needles. But hey, can you blame me?

Surgeries: Been there, done that.

I've had a fair share of surgeries and hospital visits in my life, none of them having to do with injuries since I've never broken a bone in my body. These surgeries have to do with the complications that come with scoliosis.

Surgery numero uno: My first surgery was in first grade, when I was about 7 years old. I was excited and nervous at the same time because I thought I was pretty special going into the hospital. My parents were there the whole time, making the process a lot easier and less scary. The purpose of the surgery was to install a metal rod onto my spine so it would stop growing because it was growing at a severe curve. If my spine continued growing like it was, my neck would eventually be pushed forward and I wouldn't be able to do things I am able to now. So the only option was to stop the growth of my spine. The surgery was a necessity. I obviously don't remember much about this surgery because it was so long ago.
This is my sleepy little self after the surgery.

Surgery numero dos: This was a minor surgery to install my halo, which is quite the story. See other post about that.

Surgery numero tres: This surgery was to remove the rod in my spine. I was in 3rd grade, about 9 years old. It was rather painless, minus the whole ripping the bandages off the scar and healing process.

Surgery numero cuatro: This was another minor surgery to remove my halo.

Surgery numero cinco: This was around 5th grade when I got my first kidney stone, which is also another story which I will write about in another post.

Surgery numero seis: This also involves my first kidney stone.

Surgery numero siete: This surgery's after math was painful. In this operation, I had some ribs cut out of my back, in attempt to reduce the rib hump. Originally, my family and I had thought the rib hump would be completely removed and I would have a flat, normal back. About 2 weeks before the surgery, we realized it would only change the size minorly but decided I still wanted to go through with it and get the best results possible. I was in 6th grade and appearances are obviously important to a teenage girl and I wanted to blend in as much as possible. So I had the surgery and it all went well. Having ribs removed is clearly  painful, especially in recovering. I had to wear a brace for 3 months that went from my underarms to my waist and it was painful because it pressed on the sore spot where my ribs were cut out. I stayed home from school for most of the 3 months because it was too painful for me to sit in school for 8 hours a day with my brace. The end result we got wasn't as good as we were hoping for but we did all we could and hoped for the best.

Surgery numero ocho: This was also for a kidney stone to get the stint installed.

Surgery numero nueve: This was to get the stint removed.

I'd say I'm an expert on surgeries and hospitals by now which is why I want to be a pediatric nurse. To help kids that are in the position I was once in.