Courtney and her hamster

Life according to Courtney

Hi... my name is Courtney. I'm so glad you've clicked to my story, since I can't wait to tell you all about me.  I live in North Carolina. I live here because I have a lot of friends and I don't want to move. I get to do Upward Cheerleading, too, and it is so much fun.  It's hard, but I never give up. And, I get to be the top of the pyramid because I am the smallest of the cheerleaders.  I also play the violin and piano, but I definitely do not play either instrument when I am on the pyramid!  When I'm not doing sports and making music, I love watching shows on Disney Channel, like "That's So Raven" and "Hannah Montana". Want to know my favorite movie? It's "High School Musical", how about yours?  At school, my favorite subject is reading (all of the students  take accelarated reader tests to earn points, and of course I earn a lot of them). School is ok most of the time, and I have some very good friends there.  I also love to go to church, and have some great friends there, too.  Every once and a while kids make fun of me, and I don't like that one bit.

This year I was the team captain for the American Heart Association Heart Walk in our area.  I formed a team at my school and the whole school got involved raising money and making posters in my honor (pretty soon I'll tell you why I was the poster girl).  It was a lot of fun.  We worked very hard and raised almost $6,000.00.  I made a heart pin for each walker to wear the day of the walk and we had matching shirts with our school name on the front.  We looked really good walking; all to make a difference!
My dad, mom and little brother Kyle love me very much.  We like to be together and have fun, especially  on vacations.   Although I am allergic to dogs, cats, latex, and peanut butter, I am NOT allergic to my
Guinea Pig named Andy. Having a pet is a lot of work but also a lot of fun, and he is one great "cutie patootie".
His nickname is "bubby".  I don't know why, I just started calling him that one day.  See, doesn't he look like a "bubby"?  

I had a lot of stuff happen to me when I was a baby. Well, here it is. I had 21 surgeries all before I was 4. WOW! That's a lot, but that's not all. I also had 4 shunts for hydrocephalus. After having those shunts (sort of like little tubes that go around an obstruction), I had an MRI and the doctor discovered that the
blockage in my brain was between my 3rd and 4th ventricle.  So the neurosurgeon drilled a tiny hole there for the fluid to flow so that I didn't need to have a shunt. I have an MRI once a year and an eye exam every six months to make sure scar tissue hasn't built up from the operation.  It's working great so far. 

My heart used to have a hole in it that was fixed in 1997.  I had something called pulmonary hypertension for about 2 years, which meant that I had to wear oxygen 24 hours a day. Not any more, I'm happy to say. Now I breathe fine on my own.  Did you know that you have little doors in your heart to let the blood travel around like it's supposed to? One of my doors called the mitral valve leaks, so every six months I have a test (doesn't hurt at all) called an echocardiogram.  My doctor has to make sure that the left ventricle (one of the rooms in the heart, separated by the doors I told you about) is working fine because in 1998 I had left ventricular heart failure due to cardiomyopathy (whew...did you get that?...a big word to mean that my heart got even bigger than the word, and pretty weak at the same time). 

Because of all these problems, my muscles don't work as well as I'd like them to (called hypotonia), so I have a hard time doing things that require strong muscles. For instance,  I didn't walk until I was 3 years old. Oh well, I DO get to be on top of the pyramid, and you have to admit that that is something pretty cool!

Did you think I'm done with the physical differences I have? Almost, but not quite.  I wear hearing aids, too, because I have 50% hearing loss in each ear.  Well, I guess because of the way my body was put together, I am very small for my age, and weigh about 43 pounds. Pretty soon I'll be taking some special hormones to help me grow, so  I may shoot way up like a basketball player, but I doubt is. Even though I'm pretty tiny, don't think for a minute that I'm not ten years old!  I don't like it when other kids stare at me at school.  I hope that when children read my story, they will learn that I am much more like them than I am different, and they will want to be my friends.
Thank you for reading my story.  I hope you learned a lot.  If you have any questions or just want to talk, please send me a note.  BYE!!!!!!  :) Courtney

 To the frog ponds
 Learn more about your heart
To the site map

Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing,  Lehman College, CUNY
Bronx, New York 10468

Written March 20, 2007
Last updated, March 22, 2007