As I promised, I’m going to answer questions today (all throughout the day)! If anybody has any questions that they haven’t asked, send them in to Mom’s Facebook and I will try to answer as soon as possible.
Question One: I have a question, how did she get so grown up? She truly is a young woman, not a little girl!
My Answer: I DON’T KNOW! I’m going to be 13 this year!
Question Two: Here’s my question (It might have been asked already): What would you say to someone about to go through what you’ve been through?
My Answer: I would tell them to stay strong and courageous through it all. I would also tell them that it may hurt for the first few months, but that you don’t get pain starting at 5-6 months post op, probably sooner if you only have one surgery. And that it’s SUPER worth it!
Question Three: I want to know…In the past year, what have you learned about yourself as a person?
My Answer: I’ve learned that I can be brave and strong through pain. I didn’t think I was very brave before hand, but I’ve realized that I can be pretty brave.
Question Four: Physically, would she be able to do marching band, and does she have interest in it for high school or maybe in eighth grade?
My Answer: I would be able to do it, and I want to as well! Our school doesn’t have it until you get to the high school, so I have a couple years to think about it. I think my challenge would be memorizing the music in order (I can memorize some) since you can’t have a music stand sitting in front of you.
Question Five: How about her range of motion for bending and such? Will she set off the detectors at the airport? If she grows more will rods have to be extended to accommodate her new height?
My Answer: I am allowed to bend over, lift 30 pounds (mainly in cats and my baby cousin), and sit up in bed like normal. As Mom and I have recently noticed, to get all the way down, I bend until I can’t, then squat to get lower. From what we’ve read, no, it should not set off metal detectors, but I haven’t been on a plane before, so it might. I won’t grow at all where the rods are, so no they won’t have to be adjusted. I will only grow in my legs, so I’m relying on them to grow.
Question Six: Best and worst things of the past year. How did she cope with the pain for long periods of time? What does she like best about her Ti shell?
My Answer: The best things were seeing the 3rd Hunger Games, the 2nd Divergent, getting 2 awards at the school awards day, and coming home from the hospital after surgery. The worst parts were probably back pain, taking pills, having a kidney stone (although morphine is an amazing medicine), being catheterized, and doctor’s appointments. We had this thing in my hospital room(s!) which was a star map projector. The stars are green, the nebula blue. The stars moved around, some of them stayed in place. I focused on a moving star and followed it around until the pain medicine kicked in. I still use it as a night light. There’s a fan in it that makes a noise, and my body has gotten used to it and the light, so I sleep with it on (it turns off after four hours). I don’t know what I like best about the titanium! I think I like that it keeps my spine straightened out and makes me feel like a super hero!
Question Seven: I want to know how your back felt before surgery compared to after.
My Answer: My back hurt everyday after school before surgery, and for four months after. There is a rod in my back (the right rod) that I can actually feel if I rub my back.
Question Eight: What was the scariest thing you dealt with in the course of the diagnosis, surgeries, and/or recovery?
My Answer: I think the scariest thing for me was leaving my parents for surgery the first time. Even though I had “loopy juice” I was very nervous. Another scary part was being told that I needed surgery.
Question Nine: Were the second and third surgeries scarier than the first since you knew what to expect or did you feel more at ease because you’d already been through one?
My Answer: The second and third surgeries were easier than the first one because I had already been through the one.
Question Ten: Can you feel both rods all along your spine or just one or just parts of one or both or…? Is it that you can only feel it/them from the outside or also from the inside?
My Answer: I can feel one and sort of feel the other. I can feel them from the outside and sometimes can feel them on the inside.
Question Eleven: Do you remember much from the hospital and the first several weeks or month being home?
My Answer: I remember coming in before and seeing my friend H, who was being discharged from chemo treatment. I remember having my IV started, but after they gave me loopy juice, I don’t really remember anything else. I don’t even remember saying “clar-en-eh” when they asked me what instrument I play. After that, all I remember is having an oxygen mask on and falling asleep. I remember wanting to see Mom and Dad after it. I remember my friend R, who has a brace, giving me a blanket, my teacher Mr. F bringing gifts from my class, my friends J and L bringing me TY beanie babies (a dog and a cat), I remember my brother coming in to my PICU room with a mask and gloves (he had a cold or something). I remember saying that my pain level was 10.5 on the pain scale. I remember eating my first graham cracker with my friend G. Because I hadn’t eaten in so long, it was the most amazing graham cracker ever, and I don’t even like graham crackers! I remember eating pumpkin bread at 1:00 in the morning (the bread provided by my cousin B’s husband J). I remember having my first McDonald’s french fry. I remember everything after I got home.
Grandpa’s friend says: “It is encouraging to read she is back to being a teenage girl. Great progress. I love hearing her talk about things a teenager would be into, more than the heavy things she has been through. She is getting better. TG is going to be an extraordinary adult.”
-Titanium Girl 😀