Conor's Page

Thanks for visiting my page!
Hello. My name is Conor and I am seven years old. I want to tell you about myself and about this bone disease I have. First a little about me. I have a little baby sister, Maddie, who's 11 months old. She's really cute and I help teach her about walking and things like that. You'd like her. I like school a lot...except for the parts with writing. You see, I have lumpy bones and it's not easy for me to write. But I can read really well, so sometimes I get bored with reading in school. 
Conor and Maddie
Maddie and me 
(See what I mean about her being cute?)

I do not get bored with my friends, though, and  I have good ones at school. For instance,  Jordan goofs off a lot.  He is very silly.  Julie is silly like Jordan.  She always calls me a chatterbox or a chattermouth or bigmouth because I talk every day, which I am supposed to do and I don't understand why she does that.  Ryan is fun because he always wants me to come over to his house or else he wants to come over to my mine.  Sean always bosses my table around.  All he cares about is getting a Smartie from our teacher.  When she puts up the zero noise signal, Sean keeps telling us not to make noise so we can get a Smartie.  Jacob is a friend of mine from school and Tiger cubs.  Jacob is fun. 

Nobody ever teases me at school, and  I am glad about that. I don't like when people ask about my scars.  It just bothers me.  Once, I was at a store and someone asked me why I was in a wheelchair, and I told her I was fighting an evil space alien and I slipped on a banana peel.

I used a wheelchair at the beginning of the school year because I had just had an operation. My teacher assigned one of the kids to help push me around the halls each day, and I thought that that was a great idea. All the kids got involved and they thought it was pretty cool in general. I didn't have to be in the chair all the time, either. and absolutely everyone wanted to push me in it.  I needed to use it because of this strange disease that has a couple of different names; big names, but I am smart and I know them both. Multiple Hereditary Exostoses (MHE for short) is one of the names, and  osteochondromata is the other. 

Because I have MHE, I have lumpy bones all over my body.  The ones on my arms bug me the most, because people ask about them more than any of the others. Handwriting is hard for me, but at least that is getting better. My mom and dad told me that some people are born with long, straight bones, and some are born with lumpy bones, and that I happen to be a lumpy boned person.  This is not something I would have chosen, because #1 I don't like being different and #2 it's easier to have straight bones. But it is definitely not the worst problem in the world.

We've been nice, not naughty!
Maddie and my cousin Shayla and I with Santa. You have to 
look very carefully because the girls are kind of squished 
together and wearing the same color dress.
I have had three operations.  One was when I was a month old, but that one was for my stomach, not my bones. I really don't remember it at all, but my mom said it was to fix something called pyloric stenosis.The other times I had four body parts operated on so I have a lot of scars.  The surgeries are the worst part for me because they hurt a lot.  But I get presents before I go, so that part is good. 

I also go to the doctor a lot.  I actually have three doctors, and going to their offices is worth it because it's kind of fun.  Sometimes if I'm really behaving I get a sucker or a sticker.  Once, they X-rayed my Beanie Baby Peanut the light blue elephant for me.  I would like to have them X-ray another Beanie Baby, Erin.  Erin is the most famous Beanie Baby that I have.

I must admit that I was kind of mad at my mom and dad after my last operation. I even yelled at them, probably because I was tired and sad. It was frustrating for all of us, but they seemed to understand. One time I had an arm and a knee operated on at the same time, so I was pretty beat up at first. I would much rather remember all of the good things that happen, and that was not one of them.

When I grow up I want to be a doctor and a teacher.  Here's what I'll do. I'll teach during the week and be a doctor on the weekends.  Or maybe I'll just be the teacher who teaches doctors.

If you don't have any medical problems, you might think that hospitals are scary. Don't worry about that because they can be sort of fun, and don't be scared if you ever have to have surgery. I've had it, and look at me, I'm still happy. You might want to take a tour before you go to the hospital, and learn about it from other kids.  Thanks for visiting my page! 

Conor      A poem about bumpy bones.


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

Last updated: May 1, 2008