On Wednesday was my four month appointment with Dr. C. He cleared me to pick up anything under 20-30 pounds and bend over. We forgot to ask about sitting up (not logrolling), so Mom E-Mailed the office and asked. E, the assistant to Dr. C, answered that I was doing very well, and that I was cleared to sit up and lay down in bed normally!!

Since I went for over four months without bending over, my hips get tight when I bend to much. And, since my core and my back muscles are weak, I have to push off of my arms to sit up. But this morning, I sat up all by myself!!

I actually kind of feel normal, now that I can actually bend, pick up 20-30 pounds worth of cats, and sit up in bed. It’s a big milestone to be able to do that, after over four months of not.

 

-Titanium Girl 😀

The next morning I woke up early to see if the surgery had been rescheduled to the next day, or if I was still on for 12pm.

When we got the call, Mom and Dad asked if I could eat, since it was 10am, and the surgery for Nov. 11th wasn’t until 1pm, more than 24hrs away. I got to eat a diet that was for when you had been sick. I ate many waffles, leftover applesauce, and some other stuff. I played Mario Kart with Dad.

The next day was kind of slow. I woke up, took a shower with the disinfecting soap the hospital gave me. Then I colored a picture of a puppy. When we got to the hospital, they took me back into a prep room, and started my IV. They gave me something called versed, which makes you silly and not worried. Mom asked me some questions once I was on it:

“So, what grade are you in?”

I couldn’t annunciate, but I answered: “6th.”

“What instrument do you play?”

“Clarin-eh.”

“Are you qualified to drive a car right now?”

“Yes.” The whole thing was pretty funny. Mom even caught it on video! Then they made me wear a hospital gown, and we met all the doctors involved.

They took me back, put an oxygen mask on me, and then I was asleep.

When I woke up, I was having my vitals checked by a nurse. I asked a see my parents, and she said to give her a minute. Then, she wrote down my vitals and went over and CHATTED with the other nurses! Umm, excuse me, but how is that doing her job and finding my parents! I told my friend L that if I wasn’t on so many drugs at the time, then I would have yelled at her, “Lady, where are my parents???!!!” When she came back ten minutes later, she took vitals again, and I asked again to see my parents, and she asked for another minute. I’m pretty sure I fell asleep before I saw them though.

I don’t actually remember much about anything except that some people came to see me, even Mr. F, who had brought presents from my class. After the surgeries, I came home, enjoyed two of my six Chicken McNuggets, and lay down and napped for hours. I mostly slept for the first few weeks, but Mom eventually started to make me go to bed and get up earlier and earlier.

When I was almost three months post op, I had to go to the ER because I had a kidney stone.

Now I’m four months post op. And allowed to bend, pick up both cats, and sit up in bed!

Dr. C walked out of the room. Tears filled my eyes and I sobbed. Nothing was worse than finding out you have a spine disorder, and two weeks later finding out that it’s surgery level. The radiologist came into the room to take me for an X-Ray, and she told me that I would feel better after the surgery (I took that as: Happy Unicorns Eating Lollipops and Farting Rainbows, while it really hurts and is NOT HUELAFR {Happy Unicorns Eating Lollipops and Farting Rainbows}). And I do feel better, but I didn’t 4 months ago. They took an X-Ray, and then ordered an MRI (Magnetic Resonance Imaging) to look for a reason that mine had progressed so fast. I had the scheduled MRI about 1-2 weeks later, and it actually helped my claustrophobia!! It was quite relaxing; the MRI Tech Specialist played music that I chose (Classical to soothe me) and put a color (that I couldn’t see) that I chose up on the wall (teal; which they didn’t have, so I chose blue instead). One hour later, I was finished.

Waiting. When you’re waiting for surgery time to come, time couldn’t go any slower. In the time that we waited, I celebrated my 12th birthday, and had my PreSurgery Labs (urine test, to make sure I wasn’t pregnant and that I was healthy; a chest X-Ray, to make sure I didn’t have pneumonia; and blood taken, again, to make sure all of my counts were up enough).

When we went to my pediatrician to verify the Labs, we got a call. Dr. C had an emergency, and couldn’t schedule any other time but November 10th, and at the time of MY surgery. Eventually it got pushed back even further, to Nov. 10th at 12pm. And then Nov. 9th came.

My friend G (yes, the one who gave me Hope, the stuffed puppy) came over on Nov. 9th, to see my new haircut for surgery and to hang out. We went to Bath & Body Works, and then came back to my house to hang out. J, one of my other BFFs, came over to drop something off and say hi. After dropping G off at her house that evening, my Grandma L came over to visit. (She moved 7hrs away last summer) She brought me some stuff to decorate (stickers and a mini whiteboard), and a dancing puppy which I named “Cocoa Creme” (since it has brown, light brown, and white). After she left, a family friend K came over, and he had a surgery gift for me, too. He gave me a “Hermione’s Time Turner” from Harry Potter World. THE REAL REPLICA!!! J had made me one for my 10th birthday, but this was the real deal. Harry Potter was my favorite series before I read Hunger Games. But I still love it!!

And then the last call came in.

Mom came out of her bedroom. Dr. C was NOT happy (the hospital was too full, and they didn’t have a bed for me).  If they couldn’t find me a PICU (Pediatric Intensive Care Unit) bed for after surgery, they couldn’t have my surgery for Nov. 10th at 12pm as scheduled.

SPOILER ALERT: My surgery had just been pushed back another day.

I just realized that I never actually explained how we found out that I had scoliosis. I know Mom did, but you’ve never actually heard my version:

About mid-to-late July 2014, I had been playing outside with my neighbors, The D family. Mrs. D thought she saw me limping, so Mom asked me to walk in front of them. I felt self conscious, and began to walk straight and without a limp. But when I ran back to the girls and my brother, I didn’t notice I was limping.

When we were walking back to our garage, Mom walked behind me and noticed something off about my shoulders. She thought that I had broken something, particularly around my collarbone/shoulder/shoulder blade area. She spun me around, looking for a broken bone. The weird thing was, I had never complained of searing pain like when you break a bone. Finally, she lifted my shirt, and saw a hump in my lower back. “This must be scoliosis.” She muttered. “What’s that?” I asked. She looked seriously worried, and it was making me nervous. “I think you have scoliosis.” She said a bit louder. “Umm, but what does it do?!” I asked, and I was getting very nervous at that point. “It’s where your spine curves abnormally.”

I completely freaked out. Mom immediately Googled all about it. I started playing on my laptop, still worried. Mom called the doctor’s office, and got me an appointment (I needed my shots, even though I couldn’t get in until August 5th). August 5th came around, and the doctor’s appointment did too. Traffic was really bad that morning, so we didn’t arrive until almost the appointment time. We didn’t wait very long, despite our late arrival.

My doctor had me bend over, and confirmed that I had scoliosis. She had checked at the last appointment, but there was nothing. She told us we needed an X-Ray to see the level of what it was, and she set up and appointment for us with a spine doctor. I went to school normally later that day, not worrying about it and not having a care in the world, since I had calmed down.

Mom had to call a couple times to see if the results had come in, and finally she picked up the CD. August 11th rolled around.  The next morning, I asked if they had found anything. They showed me what they had seen. Not knowing the extent of how awful it was, I went out to catch the bus and didn’t worry about it.

On the way to work, apparently, Dad had taken a picture of how awful my spine looked. I didn’t have an appointment for the spine doctor until October 9th, but Dad showed the front desk nurses, and they told him that I had a 1pm appointment THAT DAY. Meanwhile, at school, I was putting my clarinet up in the bin for storage, and Mr. F told me that I was to be in the front office at 11am for my parents to pick me up for a spine doctor appointment. I nodded and headed into my 2nd Period class.

11am came. I headed down to the front office, and Mom and Dad took me to eat lunch (since 11am is normally my lunchtime at school). Playing in the restaurant was “Titanium” by David Guetta featuring Sia. Now, I think back to that moment and think of how fitting it is that that song was basically telling me that I would soon be Titanium Girl.

When we got to the spine doc’s, we got in really quickly. He took a look at my back, and then at the X-Ray from 6 days before. He said, “There are three ways to treat scoliosis. We can wait and see,”

“That’s not a ‘wait and see’ curve, though, is it?” Mom replied.

“No. The second option is bracing.”

“We can’t brace that though.” Mom said

“No. The last option is surgery.”

Today was 4 months. I started my day not so happily, even though I woke up realizing that today was the 4 month mark. The reason: I have a cold. Saturday, we got a new Toyota Sienna (used, new to us)!! So Sunday, we went out to eat (used as an excuse to get to use the new car!!), and my brother gave me a spoonful of his chocolate frozen custard with Oreos and Kit-Kats on top. He just got over strep throat, but he’s taking medicine, so we didn’t think he was contagious. Well, yesterday I woke up with a bad sore throat, and I thought it was strep. So today, I woke up to a sore throat (slightly better than yesterday’s, which has actually gone away), a stuffy nose, a slight headache, and I felt (feel) just plain miserable!! So, it’s not strep, but it IS a cold. (Man, I have allergies bad enough as it is!!!) So all through school, I was miserable, but I kept my head high and eventually, by lunch, I was my perky self (I’m still miserable, and I still have a stuffy nose, but no sore throat or headache). I was laughing at my friend G’s jokes at lunch like I do every day. I got even more excited that TODAY IS 4 MONTHS POST OP!!!!! The days just seem to rush by me quickly, and I’m finally 1/3 of the way to ONE YEAR.

Last night, I was reading through a short journal that G wrote for one school week about how life was at school without me. She prepared a basket to go with it, including a scrapbook with inspiring quotes, cards from the other girls in our group (J, E, and L), and a stuffed puppy named “Hope”. Here’s her story:

“Hope’s Story:

I got Hope at Target for you on Saturday. It wasn’t until I got home and got ready to put her in the basket, when I noticed her 4 inch cut in her back with fluff spewing out. How she was cut, I don’t know, but what I do know is I sewed her up with yellow thread so you can easily spot her scar. I thought about how ironic that you’re having back surgery and your puppy has a 4 inch (I measured) incision down the place where her spine would be. In the process of mending her, I put a purple heart with the word Hope written on it in her chest, so she can always have hope in her heart.” This stuffed puppy went into my third surgery with me 4 months ago!!! I agree- it was VERY fitting that Hope has a 4in incision down her back. In the journal, G put the cut-out scraps of Hope’s heart. Also, in the diary portion, she wrote about Monday  the 10th of November to Saturday the 15th of November. This is an inspiring excerpt of Monday’s entry: “I ran 2 1/4 miles in twenty-eight minutes, (I’ve done better) but I ran part of it for you.”

Anyway, I had a good day when I started feeling a bit more perky. My back didn’t hurt until Mom picked me up from school, despite not taking a pill this morning (the size of the new pill is encouraging me to NOT take it). I haven’t taken one since…Saturday or Sunday??? Yeah. Saturday or Sunday.

In BIG news: Saturday we had a Band Competition!!! There are four possible awards: Bronze, Silver, Gold, or Gold with Distinction. We were very close to Gold with Distinction, but we got Gold!!! Later we went out to eat, and then went out for dessert. The place we went had each slice of pie for just $3.14, since it was Pi Day (3.14159265358979323; Pi Day is always 3/14)!! 😀 It was quite funny, actually.

Overall, I’ve been doing MAJORLY better with pain control. I don’t take pills before bed anymore, which is a plus.

-Titanium Girl 😀

Let me start off by saying that I’m NOT taking the heavy narcotic pain pill anymore!! I’m taking something different that Dr. C put me on  instead yesterday. When Mom dropped me off at school yesterday, she went to pick it up. It’s a lighter narcotic, so it’s not a written script. Dr. C just has to call it in to our local pharmacy.

Also, Monday I have a Urology appointment (I tried to post about my kidney stone in the hospital, but it didn’t work. It deleted everything I’d written!!! At that point I was too tired to write and completely forgot to continue) with Dr. R for my kidney stone. (Let me back up; I had a kidney stone earlier this month, and I had to go to the ER with searing spasm like pain {yes, much like the back spasms! And I thought I was done with those…} and they had to do a bunch of ultrasounds and an X-Ray because it could have been anything from appendicitis to kidney stones). I had to take flo-max (a medicine that makes you use the bathroom a TON, and one of the major side effects is dizziness, which sucks) for 2wks. Either way, Monday I have to go into school late (and on my first day of FULL DAYS!!!) for that.

Anyways, so today we have a Girl Scout Cookie Booth set up at my school’s wrestling match. I’m hoping we don’t have to sell in the gym, because that would mean having to watch the stupid match, and listening to all the yelling from the crowd and such (my ears are still sensitive from the hospital. FROM NOVEMBER!!! Mom thinks it’s the pain pill that I just got off, but it’s probably a combo of both). Also, I have an inspiring message from my Grandpa’s friend that Grandpa E-Mailed me:

“I read the latest from TG and I have to say SHE IS REALLY SUPERWOMAN at almost 13. LOL It is a bit funny, that a young lady who I have never met, actually gives me reflection on how much a person can go through and persevere. Please let her know she is an inspiration. God bless her.” THANK YOU GRANDPA’S FRIEND!!!! And Grandpa, thanks for sending me that!! <3 😀 It’s so inspiring to know that SO MANY people are hoping for my good health and praying for my quick healing. Even people that I’ve never met, like my parents’ and my Grandparents’ friends. Every day at school, Ms. P and Mr. F ask how I’m doing and ask how my back is feeling.

In June (National Scoliosis Awareness Month), I’ll probably post most days, every day having a fact about scoliosis. (FYI: NATIONAL SCOLIOSIS AWARENESS DAY IS JUNE 27TH!!) Mom recently  found a quote by the star of one of my favorite movies, Shailene Woodley: “Some people have crooked teeth, some people have broken fingers, and I’ve got a back that has my initial on it.” -Shailene Woodley on Scoliosis. Shailene, in case you didn’t know, has scoliosis, and had to wear a brace for a couple years.

-Titanium Girl 😀

Today in 2nd Period Math, I had no back pain. This is the first time that has happened sitting up since before my backpack got heavy (in 4th Grade, when I went into the High Ability {Honors} system, where we have to carry around a TON of binders and folders) and my scoliosis occurred (in 5th Grade). Pain has gotten better and better; Saturday, my brother, Mom, Dad, and I went out to eat with Grandma and Grandpa, and I was up for 4-5hrs before pain kicked in. Today when Mom dropped me off at home to go to a meeting at my brother’s elementary school, I lay down for about 40min, then came out to the living room to play Minecraft PC and listen to The Fault In Our Stars soundtrack. Dr. C did mention pain would last for about 3-4 months, and that I would have to take a pain pill for about that long, too. I’ve almost forgotten to take it for a couple days now before going to school, and Mom says that’s a GREAT thing. Since I’m not having as much back pain, I forget to take it. And forgetting to take it leads to coming off of it more easily and quicker, too. Overall, I’ve been doing increasingly better with pain management and sitting up for longer without pain. Earlier, my friend L and I were walking to the elevator for lunch, and she goes, “Oh, do you need your pillow?”

I had forgotten my pillow!! “Oh, yeah! Well, umm, no, I guess not.” I replied.

“Are you sure?”

“Yeah; it’s only thirty minutes, I should be fine.” It was weird (not painful) to sit in a hard chair with absolutely no pillow. I decided to just sit forward in the chair so that I didn’t get uncomfortable. Like I said, I’m doing SOOOO much better with everything; I’ve already taken off all of the extra pillows from my bed, and it’s comfy!! 😉 I can’t wait for everything to become normal again!! I’m actually more excited about November 17th, 2015 (1 Year Mark) than my 13th Birthday!!!!

 

-Titanium Girl 😀

On November 17th, 2014, I became Titanium Girl with rods, hooks, screws, and 12 fused vertebrae. On February 17th (earlier this week), I had been TG for THREE MONTHS. Pain suddenly has been so much better, although it’s still rough if I sit up to long. Dr. C said that the pain would last for about 3-4 months, but it’s getting better already. I’m hoping that most pain is gone by the time 4 months rolls around. I’m already 1/4 of the way through to 1 year. The days have kind of slipped by me, although you would think they drag with all the pain I had. Either way, thank you everyone for all of your support!

 

THREE MONTHS!!

-Titanium Girl 😀

First, my Dad’s co-worker sent some questions, and Dad forwarded them to me via E-mail:

Who came up with the name TG? Did any of TG’s ribs have to be broken during surgeries? Looking back, How did it feel to know so many people were thinking of and praying for you? How many total doctors were involved through the entire process?

I’m pretty sure that Mom and Dad  came up with Titanium Girl, or “TG”. They then suggested it to me, and I liked it. The ribs had to be cut out and crushed to fuse my spine. Looking back, {and even now!!} I felt amazing that so many people, even people I barely or didn’t even know, were thinking of me and praying for me. It inspired me to push through, even when the pain was awful. I have ABSOLUTELY NO IDEA how many doctors were involved. It was THREE surgeries, so I’d have to say probably a lot. I hope that answered your questions!

Next is just an inspiring message from one of my Grandpa’s friends, which Grandpa sent me via E-mail:

“Just tell her for me that she is a hero in my book. I have been with adults who have had surgery, and not been as positive and strong and work as hard as she has. I have gone through several surgeries myself, and I know how hard it is to push yourself to get better.”

Next is a question from my Aunt: I want to know how she’s doing with the pain curve.

I’m doing good getting ahead of the pain curve, but sometimes I fall behind.

From my Mom’s Friend: Which was her favorite of the Harry Potter books, and why?My favorite HP book was The Deathly Hallows. This one was my favorite because of all the suspense and action. Order of the Phoenix is a close second, though.

From another one of my Mom’s Friends: I want to know who TG’s hero is, because TG is mine!

I don’t really have a hero, but if I had to pick one, it would be my friend H, who recently fought cancer.

From my Auntie J: How are you doing with relearning to sit, stand, get out of bed, and movement in general?

I’ve been doing that stuff for a couple months now, in a couple weeks it will be 3 months, so pretty good.

From my Mom’s friend: How tall are you now and do you feel taller?I am just over 5 foot 2.25 inches.  I don’t feel any taller, but when I stand next to my friend G, {who, before my surgery, was taller than me} I do feel taller since I am as tall as her now.

From my Grandma: What did you take away from the Scoliosis Support Group Meeting? What did you learn by going there? Are you looking forward to going again?

I learned some stuff about scoliosis, like how if you have an inward turned big toe, you may have scoliosis. I really look forward to going again, as I’ve told Mom a bunch the past week. The girls were all nice.

From my Mom’s friend: Are you taller than your mom?! What is your favorite subject in school? What subject is the most challenging for you?

I am very close to being my Mom’s height. But no, I’m not. We’re about an inch to an inch and a half apart. My favorite subjects are reading, math, writing, social studies, and band. The subject most challenging is probably science, since I don’t like much of it. Sometimes I struggle with math, but it’s mainly science. Also, I’m not a fast reader, so my ELA/Social Studies teacher’s reading challenge has been kind of hard. With my missing 2 months of school, she adjusted my requirement, so it’s been easier.

From my Grandpa: have you had any second thoughts about having the amount of surgery that you had?

I didn’t really have a choice, but if I did, no. My doctor would have had to do the same stuff to my ribs and spine, so there is no regret or second thought.I hope I answered everyone’s questions. A few of my Grandma’s co-workers are sending in questions soon, so stay tuned for Q/A With TG Part 2!

-Titanium Girl 😀

Tomorrow or Friday, I will be answering questions you send to my Mom’s Facebook page!! You can ask me anything from how I am doing to scoliosis surgery tips.

 

-Titanium Girl 😀