Three Weeks Post Surgery

It's hard to believe that Tuesday will be three weeks post-surgery! I've been home for two weeks today, and the recovery process has been long but very successful!

The car ride home from the hospital was ROUGH. I got extremely car sick and could not get comfortable. Getting in the car in the first place was quite the process. Being tall and not being able to bend at all makes it a little difficult to maneuver into a car - but I did it! I was so happy to be back home and get out of the car. I walked as fast as I could (which is about turtle speed) into the house and collapsed into my handy dandy recovery recliner where I would be staying for the next week and a half.

The first couple of nights at home were rough. I was extremely uncomfortable all the time. Every day got a little bit easier and by Wednesday (I got home Sunday) I was able to shower with the help from my mama! Side note: Don't EVER take for granted the ability to shower easily because it is HARD with two rods and a bunch of screws in your back. I feel like I ran a marathon every time I shower. I miss when things were easy!

For a good week and a half I sat at home and did a whole lot of nothing! Lots of people visited to keep me company (thank you to everyone who did!). I went on lots of little walks as much as my body would let me. I tried to get my appetite up and ween off of the pain pills. I watched lots of TV and Netflix. Read lots of books. That's pretty much it. My mom has been a saint and has kept me entertained these past few weeks which has been so great. (Thanks mom love you!)

My first venture out of the house was to a doctors appointment on the 30th. I had been home for a week. It was just a normal after surgery check up, and then they had to check my blood to see if the transfusion worked. It was 11.1, which is a lot better than 8, which is where I was at in the hospital. So in retrospect, the transfusion worked. I have to go back to have them check it again at the end of the month because 11.1 isn't the "perfect" number, so if it isn't up to the number my doctor would like I have to take iron supplements.

I started slowly getting out of the house a couple days after my doctors appointment. I went to Kohls and Bed Bath and Beyond to get things for my dorms. Then the next day I went to Target to get more stuff for my dorm. (I'm gonna have a cute dorm room). And then my first BIG outing I had was on July 3rd! I went to the annual Happy Hollow fourth of July celebration. I went at about 7 and made it all the way to fireworks that ended at 10:30. Was I uncomfortable? Yes. But I NEEDED to get out of the house, so I got through it! It was a fun night and I'm glad I decided to go. Unfortunately, I did not have a good day on the fourth of July. My pain comes in waves. Some days are way worse than others, and it just so happens that my body decided to hate me on the fourth! I tried to get out and see fireworks with Blake but it didn't end up going so well and I ended up at home going to bed at about 7. Rad life, I know.

It's now the 6th and I'm feeling good! I only take pain pills if I REALLY need them because I don't like the side effects. So basically I'm off pain pills and only taking tylenol a couple times a day if I need it. I got through the toughest weeks, so it can only go up from here. Everything is harder when you have no back muscles and can't bend at all but you figure it out! I'm going to have killer thigh muscles by the end of this summer. I'm slowly getting back to my normal life before surgery, and that makes me really excited! It's a looooong process but it gets easier every day.

 The recovery recliner

 Before and After! I was still super swollen when the picture on the right was taken. Now you can see my shoulder blades so that's good!

Cooper has been my cuddle buddy the past two weeks.

I was sick of having frizzy curly hair so Emily helped me straighten it. That's what best friends are for right? 

Third of July, going to Happy Hollow.

Rocking that scar.

 My attempt at going out on the 4th 

God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

Scoliosis Diaries: Hospital

I made it!

My surgery was on Tuesday, June 17 at 8 AM. I had to report there at 5:30 to get all checked in. I was a nervous wreck the night before and morning of. Couldn't stop shaking! I just wanted to get it over with. My mom, dad, step-dad, step-mom, best friend Emily and boyfriend Blake all came along with me at 5 to see me before I had to go into surgery. It was nice having them there to ease my anxiety a little bit. The last thing I remember about that morning was them pulling me into the OR room where there were a bunch of people getting stuff ready. It was also really cold. Then someone put an "oxygen" mask over me and told me to take some really deep breaths, and then I was out. I don't think that mask really had oxygen in it. :)

The surgery took 5 and a half hours. I don't remember being in the recovery room at all. I kind of remember being in my private hospital room but not a lot of it. My grandparents were there as well as my sister, and my friend Danielle, her boyfriend Alex and sister Julia. Everyone who came in the morning was still there as well! Apparently I was being really funny and "polite" when I was talking to them. I don't remember! You'll have to ask my parents details about what I was saying! :) I do remember not being able to open my eyes and my back really hurting! They taped my eyes shut and so they were SO dry and I could not open them at all. It was so frustrating. I kept having my sister come up and look in them because I swore something was in them, but there wasn't! They were just dry. So I was talking to everyone with my eyes closed. My face was super swollen because I was laying on my stomach for almost six hours, so everyone said my lips looked like Angelina Jolie's times 10. Thankfully there are no pictures to prove it! :)

The first night was pretty rough because the nurses came in every 20 minutes to check on my vitals and stuff. It was impossible to sleep. I also had a morphine drip and because of that I had to wear a thing that looks like an oxygen mask so it could measure my CO2 levels to make sure I was not overly sedated. It was so annoying and beeped every single time I started to fall asleep because my breathing got shallow. It was awful. I had to wear that until my morphine drip went away which wasn't until yesterday! Not fun. In the middle of the night on Tuesday they came and made me stand up for the first time. OW. It was very uncomfortable and hurt A LOT. I got super dizzy and sick to my stomach. I was not very happy, but luckily it has gotten a lot easier.

The next three days were pretty much all similar. I started being able to get out of my bed and walk independently. I even got to shower (with the help of an OT) so that felt amazing. It was hard getting used to walking with a straight back and aligned hips, but every day it got a little bit easier! I have had amazing people visit me every day which made my days so much happier!! Thank you thank you thank you to everyone who came and visited and brought balloons or sent flowers or even FISH! (Em and B you rock). I appreciate all of you so much!

The one scary thing that did happen was on Wednesday night. The nurse got me up at about 3:30 to walk. I was NOT having it. I didn't feel good and knew I just needed to sleep. But she pushed me to walk anyways. So I got up and then told them that I wanted to go into the bathroom because all I really wanted to do was sit. So I was in there, and then all of a sudden I got super hot and felt really weird. I called for my mom, and the next second I was in a chair with five nurses around me. I passed out in the bathroom. This is pretty normal for a person who just had spine surgery because of all the strain it has on your body but it still was really scary!! Glad that was the only time that happened.

I was supposed to be out of the hospital by Saturday (today) but unfortunately that did not happen. My blood counts are low, which is causing me to become very light headed and dizzy every time I get up. A normal blood count number is a 12 and my blood count right now is at an 8. After discussing this with the doctors and my surgeon and nurses and parents, we have decided that if my number does not increase Sunday morning, then I will be getting a blood transfusion. This will help me feel better in the long run. Either way, I will be going home tomorrow so I am excited for that! I am sick of sitting in a hospital room!

Overall, my surgery went well. And it hurts. A lot. And I'm in a lot of pain pretty much all day. But it's going to get better! I have also gotten taller! I think every single nurse that has worked with me has mentioned how tall I am. I hate to say it but I think I am pretty close to 5'11-6'...that's tall. But I would rather be taller and straighter than shorter and curvier!

It is going to be a  l  o  n  g  road to recovery but I am ready to conquer it! Thank you all for the happy thoughts and prayers being sent my way! It has helped so much knowing that I have so many people that are thinking about me!

 Before surgery...just a little nervous!

 Pre-Op

 Look at my pretty new accessory!

 Surgeon writing on me

 After surgery

 My big bandage covering the scar

 First time sitting up

 Love my pillow pet!

 Look at that posture!

 First time walking!

 Emily Rose!

 Yes I am coloring in a frozen coloring book

 I slept...a lot.

 My room number was 818. Coincidence that my favorite two numbers are 8 and 18?!

 Look at all that prettiness!! Love!!

 Shoutout to Blake for being there every day!

My room

Scoliosis Diaries: One Week

One week until my surgery date! It's all becoming very real. Yesterday I had my appointment with my back doctor who will be doing the surgery, Dr. McClellan. Today I had to go to my pediatrician to get a pre-surgery physical and blood work done!

At my appointment with my doctor, I had to get a CT scan of my back and X-Rays. The X-Rays were for the bending tests. This shows my doctor how flexible my spine is, and how easy it will be to put two rods in it! My spine happens to be very flexible and so he says that it will be a "beautiful fusion", whatever that means :). I got to ask him all sorts of questions at this appointment. He told me that I will be at the hospital for three to four nights. I will have an OT come twice a day and a PT come once a day. They will teach me how to become independent again. He said that visitors and treats and teddy bears and balloons are welcome so don't be shy ;). (Maybe not the first or second day though I might be a little loopy!) He also talked about how after I get out of the hospital I will feel kind of dead for about two weeks, but then I will start feeling like my normal self again! This appointment eased my fears a little bit and made me slightly less anxious, so I suppose that's good!

At my pediatrician's office today it was just a normal physical and blood work. I am all healthy and good to go! Getting blood drawn is NOT my favorite thing but I guess I better get used to it.

I can't believe it's only a week away! Prayers and happy thoughts sent my way are much appreciated :)

PSA: Do What Makes You Happy

As an 18 year old who is almost graduated from high school, I have become a very confident person. But believe me -- I have not always been this way. I used to be very self conscious of what other people thought of me, and used to mold my personality to whoever I was with so I would "fit in". I was an easy target to bullying due to my passion for working with kids who are disabled. Being so passionate about something that was not understood by most people my age made it REALLY hard for me in my middle school/early high school years. I have grown to understand that one of the only things in life that you can control is your own happiness, so in the end, you need to do what makes your heart full.

With this being said, I see way too many people these days (especially teenagers) molding themselves into society's definition of "normal". This makes me extremely sad. No one should ever feel like they have to change who they are in order to be considered normal. So, this is my message: Do what makes you happy. You want to post a selfie because it makes you feel good about yourself? Great! Do it. Who cares what other people think? Do you have a passion that not a lot of other people understand? Awesome! Pursue it. Help people understand why it is so important to you. Educate people. It is worth it. Wear the things that make you feel good about yourself, say the things that you are truly feeling, do the activity that you love, pursue your dreams, do whatever it is that makes you fully and completely filled with joy, because that is something that is entirely in your control. There are thousands of things in this world that we are not able to control, but your happiness is not one of them. Don't allow other people to take away this happiness based on their judgments. Do what makes you feel good because in the end that's all that matters.

Senior Project - The Upside of Down Syndrome

Today I FINALLY got to present my senior project! For those of you who do not know, Senior Project is a graduation requirement for all students who go to Westside High School. Basically you have the freedom to do anything you want -- as long as it is school appropriate. I chose my topic to be raising awareness and equality for people who have Down syndrome. 

For my product, I made a documentary! In this documentary I interviewed three families who all have a child that has Down Syndrome. I really wanted this documentary to show how people who have Down syndrome are more alike than different. In the end, I thought that my product ended up being really educational while at the same time entertaining and motivational. I am very proud of it!

So in order to pass Senior project I had to give a 12 minute speech about the whole process. I gave the speech this morning! I was super nervous but after it was over I was EXTREMELY relieved. One step closer to graduating! So crazy.

HUGE thanks to Casie Schlueter for helping me out immensely throughout this whole process. I couldn't have done this without your guidance. I also want to thank you for coming to my presentation today and supporting me! It meant the world to me.

The video attached is my final product of my Senior project documentary, so check it out if you have not already!

Scoliosis Diaries - I Am Scared

I am scared. No, scratch that. I am terrified. I've never broken a bone, I've never even had one stitch! And now spinal fusion? I'm not ready for that. I'm terrified.

I remember the day I got diagnosed like it was yesterday. I was 10 years old, and Dr. Penny was doing my physical and noticed that I had a slight curve. She she told me to go see Dr. McGuire at the Creighton Medical Center. A few weeks later I found myself sitting in the waiting room. I had my first X-Ray. The first of many, many X-Rays. The results were pretty good! It wasn't a large curve. 20 degrees or so. Nothing to really worry about yet. I had to go back every 6 months and get X-Rays to make sure nothing changed. So for a solid two years I never missed an appointment, and my X-Rays always came back with good results. No change! So when I couldn't make it to one appointment, it wasn't the end of the world. Nothing ever changed anyway, so we just waited another 6 months to go back to Dr. McGuire. That one missed appointment literally changed everything. When I went back and got my X-Rays, Dr. McGuire came back with a sullen look on his face. My curve changed. Not just a little change, but a drastic change. Instead of being a 20 degree curvature, it was a 40-something degree curvature. In other words, that wasn't good. Dr. McGuire referred me to the Nebraska Spine Center where I met my current doctor, Dr. McClellan. I remember sitting in the office, age 13, and asking the nurse, "am I going to have to have back surgery?" The answer was no. The curvature wasn't bad enough and I was way too young. I hadn't even hit puberty yet - I had a lot of growing to do. I was relieved! The last thing I wanted was a surgery that would implant 2 titanium rods in my back and make me have a huge scar. No thanks. Instead, I had to wear a back brace. As if middle school wasn't awkward enough, add a back brace to the equation and you can only imagine how great my middle school years were! But - I didn't complain. If this was going to stop me from having to have surgery, I was all for it! I wore that leopard print back brace religiously. 23 hours a day! For two whole years. That is a long time to have to wear a plastic body suit that disabled my bending abilities, but again, I didn't complain. It became normal. Finally my sophomore year of high school, I stopped growing. This was great news, because when I stopped growing, I could get my brace off! This was because the brace was supposed to stop my curvature from increasing while I was growing. When you stop growing, your spine is supposed to stop moving. So, I got my brace off! Two freakin years, and I was done! My scoliosis worries were behind me...or so I thought.

After I got my back brace off I had to continue going to the Spine Center to make sure my curvature didn't keep increasing. The chances of your spine changing after you're done growing are very slim, so no one was too worried. Welp. I'm apparently the rarity. My curvature kept increasing and increasing, and I kept getting more and more frustrated. I spent two years dealing with a stupid plastic body vest that was supposed to make everything better - but it didn't. So at my most recent appointment, we had to make a decision. My curvature is at 58 degrees, which is not good. But! It's not HORRIBLE. I could live with a 58 degree curvature! Unfortunately, my spine doesn't want to stay still. It wants to keep curving. The chances of my spine staying at a 58 degree curvature are around 0%. As I get older, my curvature will keep getting worse, causing major problems. So, what're the other options you ask? Well, let me tell ya. It's a little something called spinal fusion. This means that I will have two titanium rods lining my spine, while little screws fuse it all together to make my it straight. This means that I, A) am going to be about 2 inches taller. That's not the worst thing in the world but come on, I'm already like 5'9. B) there are going to be some major restrictions afterwards. I won't be able to do contact sports or jump on a trampoline or do P90X or anything that really strains your back. Again, not a huge deal, but still sucks. Maybe I wanted to become a professional kick boxer?! C) this is a 6 week recovery. That's a long time to not be able to do much of anything. I'm a very active person, and I can't stand still. Literally I am ALWAYS doing something. Soooo that really sucks. D) I'm going to have a big scar down the center of my back. Really not a big deal at all, but what 18 year old girl wants to have that?! I can tell you. Zero.

All of that terrifies me. The surgery itself is terrifying! 5 hours under while they completely cut my back open and put metal RODS and SCREWS in there?! Ummm yeah no thanks. I'm terrified for afterwards. Am I ever going to be able to touch my toes ever again? Am I even going to be able to touch my knees?! Dance has been a HUGE part of my life since I could walk...will I ever be able to dance like I can dance right now? The answers to all of those questions are most likely (hopefully) yes. Everyone has told me that after about 6-8 weeks, things go back to normal! That you form a new normal...but I don't want a new normal. I like my normal right now.

So yes, I am terrified. But I know I can get through it. I am the most stubborn person in the world. Seriously. Ask my parents. Not only am I stubborn, but I am determined. I refuse to let this surgery hold me back from anything. I refuse to let it stop me from living my life to the fullest. If anyone can get through it, it would be me. It will be me! My surgery is a little over 3 months away. June 17th. That means my summer will be filled with lots of Netflix and ice cream, but hey, that doesn't even sound half bad. I am scared. But I will be okay.

Spread the Word to End the Word

As I was walking through the halls today, I heard the word. The one word that makes every bone in my body shake with anger. The r-word. I have never and will never understand why people use the word retard in a derogatory way. That word is never, EVER okay. Yes, people are entitled to their own opinions, but the use of the r-word is discrimination, and discrimination is never justifiable.

Here is something to put it in perspective:

There is a young girl who has cancer in a classroom. Two kids a couple desks over from her are talking about something that they don't particularly like - something that they think is stupid. One kid says to the other, "That is SO cancerous." Another person in the class says to another kid "You are cancerous." Instead of using the word stupid, they choose to use the word cancerous as a synonym for stupid - right in front of a person who has cancer. If this situation were to ever happen in real life, those kids would get in HUGE trouble - as they should. It is never okay to use a medical term to describe a person or an activity that you don't particularly enjoy.

What's the difference?

Using the word retarded is exactly like using the word cancerous. It is using a medical term (that is barely ever used anymore) to describe something that you don't like. It is saying that people with disabilities are stupid. That statement could not be FARTHER from the truth. In fact, people with disabilities are some of the most intelligent people I know. They are the most loving, open-minded, nonjudgmental and inspiring people in this world. They know things about life that I can only hope to understand one day. All they want is to be treated just like everyone else is treated. They want to have friends and talk about their day and hang out with people on the weekends, just like everyone else. Unfortunately, when the r-word is used, they start to feel like they are outsiders - like they are stupid. According to Fiona Rillotta and Ted Nettelebeck of Adelaide University, when people with disabilities are aware of negative attitudes held by other people, their self-confidence starts to decrease. In other words, when people use the r-word in front of someone who has a disability, that person starts to feel like they are less. Again, that statement could not be farther from the truth. People with disabilities are more. So much more than someone who chooses to use a malicious word to describe how they are feeling.

With that being said, some people may try to argue that it is okay to use the r-word when they aren't in front of a person with a disability. That statement is completely false. The r-word does not just hurt people with disabilities. It hurts people everywhere. It hurts everyone who has family member with a disability. It hurts everyone who has a friend with a disability. It hurts people who devote their lives to being advocates for people with special needs. It hurts teachers who spend months and months trying to get people to understand that people with disabilities are more alike than different. It hurts countless numbers of people who understand that people with disabilities are the opposite of stupid.

It definitely hurts me. And after reading this, I hope that it hurts you, too.

All I ask is this: the next time you hear the word retard used in a discriminatory way, stop them. Explain to them why the r-word is never okay to use. Tell them that they should get to know someone who has a disability, so they can understand why that word should never be used. Tell them how hurtful it is, and why it is so hurtful. And if they continue to use that word? Buy them a dictionary.

My dream is that my future children will grow up in a world where the r-word does not exist. You can be a part of that movement. Spread the word to end the word.

Jordan

I've been wanting to start a blog for a long time for lots of reasons. The main one being so I can document my journey through spinal fusion this summer! Hopefully by writing about my personal experience with scoliosis surgery I can help other people who have to go through the same thing. BUT I don't have to worry about that for a couple more months!

As a senior in high school I have been filling out scholarship essay after scholarship essay, and almost all of them are about the same thing: the reason why I am the way I am. Most people are aware that I have a very strong passion for working with people who have disabilities, and have had this passion/gift my whole life. I have devoted my life to being an advocate for people who can't always be advocates for themselves, and more importantly, doing what I love most. What a lot of people are not aware of is why. So, here's my story.

I was a kindergartener at Oakdale Elementary School when I met Jordan Kreus. I gravitated toward him from the moment that I saw him. At the time, I thought that Jordan was just like me. At the young age of five, I had no idea what the word autism was or meant. To me, Jordan was just like everyone else. To this day, I still believe that he is. Jord and I became inseparable. I was with him as much as I possibly could be. When he was mainstreamed into general education classes, I would be sitting right next to him. Every day at recess you could find me standing with him on the blacktop counting the cars that were passing by. He knew my weird quirks and I could read him like a book. We became best friends. From having a relationship with Jordan I was welcomed into the special education room at Oakdale with open arms. I gained friends of all kinds of different abilities while at the same time shaping my future. I knew that one day I would be the one running a special ed. classroom. As the years passed, Jordan and I only become closer. When we went into the middle school, I made sure to be in the special ed. room doing what I loved most whenever I possibly could. Two years later we found ourselves in high school. I became a volunteer aid the first day of freshman year.  I started volunteering at Camp Munroe that same year, and then started working there when I turned 16. Now, I'm almost done with high school and going to UNO to major in special education and get an endorsement in severe autism and profound disabilities. And guess who my best friend still is? Jordan. Throughout13 years, Jordan has never left my side.

Autism does not define Jordan, but Jordan having autism has completely defined my future. Without him, I would not be the person I am today. I have been blessed with SO many amazing opportunities because of being so involved with the special education program. I have met so many amazing people  and am changed and inspired every single day because of the kids that I work with. I am SO blessed to have found the reason I was put on this world at such a young age. I cannot wait to be able to do what I love most for the rest of my life - and it's all thanks to Jordan.