Author: tg

I just got home from the hospital. It turns out that my kidney stone had not been blocking, and that it had moved into the bladder, where it was sitting in a corner. Dr. R just removed it and didn’t put a stent in. Yay!! I don’t have to get any stent removed in four-six weeks, and I’m glad for that.

So yay!! I’m home!!

 

Titanium Girl 😀

I have ANOTHER kidney stone. (Sorry, I haven’t posted about it, it happened in Mid-July and I’ve been busy.) They have to go in after it tomorrow (at, like, seven thirty am or something way too early to think about) with a stent. And then, 4-6 weeks later, they have to take it out.  So tomorrow I have to get up at like five thirty to leave by six. For school (and this is what I’m used to) I have to get up at around seven thirty to catch the bus at eight fifteen. I also didn’t sleep very well last night (I woke up PARCHED at two and was up for another hour and a half) so I’m not going to sleep great two nights in a row.

 

Wish me luck,

 

Titanium Girl 😀

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 😀

Oh my gosh… I’m so sorry I haven’t posted until now (it’s seriously been since JUNE FIFTH!)….

I really don’t know what to write, other than that I’m seven months post op (as of last week).

Since my Q/A day is this Saturday, I think I’m going to start collecting questions. Please send some questions in! (I can NEVER have too many questions…)

If I have to many, and my post is starting to get pretty long, I’m just going to make several parts.

 

So remember to send in your questions to Mom’s Facebook page (or for my friends and family, you can just email me!) I’ll be collecting these all week, and on Saturday, June 27th (National Scoliosis Awareness Day) I’ll post all of my answers (I hope I can get them all!!) Also, if you have any requests as of what you would like to see during the rest of National Scoliosis Awareness Month (or any other time), please send them to Mom through Facebook, or email me.

-Titanium Girl 😀

Today’s post is inspiring quotes!! These come from a quote book that my friend G gave me as a surgery gift.

-It always seems impossible until it’s DONE.

-Tell me I can’t, and then watch me!

-Think about how far you’ve come and how far you’ll go tomorrow.

-There are so many beautiful reasons to be happy.

-You will never know your limits until you push yourself to them.

-I can. I will. END OF STORY. 

-Limitations only exist if you let them.

 

At our school awards day, I won two, which is the most I’ve ever won. One of them was all A honor roll, which I’m glad I got, given that I was out for 2 1/2 months and then on 1/2 days for 2 weeks, with another 1-2 weeks of 3/4 days, plus time in the hospital for my kidney stone in February. I’ve held it, but I was severely close to a B+ in math. But the biggest surprise was the BAND AWARD!!!! 😀 Mr. T was only calling the first chairs to receive the award, but then called me!!  I suspect that it was my score on the last test. I scored a 9.0, the lowest score you can get (the lower the score, the better!!), and tied with J, the previous first chair. (Since he was there the most recently, he got it.) He received the award, too. Another thing helping me out was that I’ve held first or second chair, even after being out for two months, and only practicing for 2-5 weeks of that. When Mr. T called my name, my mouth literally looked like this: :O

Anyway, I’m really happy with my awesome achievement, considering what all has happened to me!!

 

-Titanium Girl 😀

 

Okay, so June (as I’ve told you before) is National Scoliosis Awareness Month. I’ve got a few jokes lined up for today.

1st Joke:

Do you ever think that we’ll get this scoliosis problem straightened out??

2nd Joke:

I want to tell you another scoliosis joke, but it’s completely out of line.

3rd Joke:

I heard this joke about a weak back.

 

That’s what I’ve got, but there will be a couple tomorrow, too. Also, for the weekend of June 27th, I’ll have a social media Q/A again. You don’t have to ask questions, you can also send me some jokes you’ve found.

 

-Titanium Girl 😀

Happy 6 months!

So, tomorrow Mom and I are going to bake cupcakes for a class party to celebrate my 6 months. I’m giving everyone pencils that look like titanium rods and one cupcake. The cupcakes are going to be strawberry and lemon (not combined, different flavors) with white icing. On the white icing, we’re going to use black accent icing to outline the cupcake and write on it “Ti22”.

Wednesday the 13th was my band concert! When I came back from my surgery, I got to enjoy my first chair clarinet title for a few weeks until our test. We get our results about 1-3 weeks after the test, 4 at most. When we got the results, I had earned second chair clarinet. After THREE surgeries, I managed to keep first row, not to mention top two chairs! Someone else got first (J). When we got our next results, I had tied with J and got second chair, since he was at first chair the last test. So, as I told Mom, I’m rightfully first chair, too.

Anyway, today is 6 months!! Maybe Mom and I can post some pictures of the cupcakes later, and the pencils. I don’t know.

Also, for June (National Scoliosis Awareness Month), I’m thinking of doing a Q/A week, probably mid-June. I’ll probably do scoliosis puns as well. Example: “I wanna tell you a scoliosis joke, but it’s completely out of line.” I can’t wait for June to roll around; I’ve got so many puns lined up!

My grandpa’s friend sent my grandpa a picture, but it has words on it, so I’ll just type it: “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” He also said this in the message: “You know who to pass this on to.  Wow, I know she is doing well, but reading how she is doing it just impresses the heck out of me.” Thank you!

-Titanium Girl 😀

 

This weekend, my girl scout troop went camping!! It was my first time camping as Titanium Girl, and my back didn’t hurt one bit! (Although, it hasn’t hurt since about 4-5 months…so…) We all had to write our names on our cups to identify, and we all also wrote the names of celebrities. I wrote Shailene Woodley, since she has scoliosis. I also wrote “Twisty!” since that’s my camping name. The ones of us who have scoliosis wrote “Twisted Spines Club” on our cups, and my friend, G, (the one who gave me Hope the dog) wrote “I support the Twisted Spines Club” on hers. We hiked for 2hrs, and my feet were KILLING me!! We did archery, and Mom got this bruise the size of my fist!! I shot the first arrow closest to the target, and it wasn’t that bad. My friend S said that archery hurts your back, but it didn’t hurt mine. I don’t know if that meant the bow was so heavy and it pulled on your back, but it wasn’t that heavy.

Yesterday was Mother’s Day, so S and K woke up early to give the leaders wrapped up chocolate bars that we had sneaked from smore’s Saturday night. When we were walking in from making smore’s, I was carrying the tray with the chocolate, marshmallow, and Graham crackers on it, and G and I walked in stuffing our faces with marshmallow! It was pretty funny!

Sunday, May 17th is my 6 month mark!! I will post about it, and Mom and Dad may, too. Watch out for that post!!

-Titanium Girl 😀

PS: Again, make sure to check the blog on the 17th/18th for the 6mo post, and also through June for Scoliosis awareness month. I will do scoliosis puns and quotes and stuff like that, so be on the lookout for DAILY June posts! Something else: today is 6mo for the first surgery on the 11th of November!! YAY!!!

I think I’ve become a normal, preteen girl again. I’ve gained a lot of weight since my last post, I don’t have back pain at all anymore, I ride the bus, I wear a backpack (ON MY BACK!!! YAY), and I can pick anything up (my cats are pretty happy about that, too!) I can run around, jump up and down, and play with my cousins and friends normally!

As Mom says, I’m getting my life back.

One of the bigger things is that I don’t ever have back pain (I haven’t been on any road trips longer than 2 hrs to a support group, but that didn’t hurt. And it was 3 months ago!) I’m 5 months post-op, and the doctor said that the pain would last until 3-4 months. I remember the times in 4th and 5th grade when I would come home with a pained back. We thought it was because of my backpack (I had just gotten into the gifted/talented group, and we have SO MUCH to carry). Mom looked through some pictures and saw that, in our Disney trip photos in 5th grade, my left shoulder was just slightly tilted downward. In some of my band concert photos (these photos at the concerts were taken from an angle, so they aren’t something to go by) my shoulder was dropped.

Either way, I’ve become a normal preteen girl.

 

-Titanium Girl 😀

PS: Make sure to check this blog some throughout June. June is scoliosis awareness month, and I’ll probably post every day (if I’m not busy). I’ll probably post some tips or something. Maybe quotes about scoliosis….You decide!

So today is 5 months. YAY!!!!!!!!!!! I’m happy for a few reasons, one of which doesn’t involve my scoliosis or surgery. One reason is that we are learning how to play the song “Beauty and the Beast” from the movie “Beauty and the Beast” in band. I swear, I have been humming it ever since I got the music yesterday. I can’t get it out of my head!!! Another reason I’m happy is bending over and RIDING THE BUS. This week was my first week riding the bus, and it didn’t hurt my back at all. Next week we are going to try having a normal backpack… The last reason that I am very happy is that IT’S FIVE MONTHS. ALREADY!!! 😀 I can’t believe it!

I am SOOO excited to be 6 months, and then 1 year post op! I’m even more excited about it than turning 13, which says A LOT!

-Titanium Girl 😀