Tuesday, May 24, 2011


I am teaching my class how to make a blog. I will show them how to make a picture.

Thursday, April 28, 2011

Monday, April 25, 2011

My mom is running a marathon

Last year my mom started running. She ran a a couple 5ks. I ran a 1k with my sister. Last week she ran a half marathon with my cousin. In September she is going to run her first marathon. In November she is going to run a very special marathon. She is gong to run the New York CIty Marathon to raise money for research to help EB go away. She rocks!

Tuesday, November 2, 2010

My glasses

2 days ago my Dad was telling me how awesome it was that I never broke my toys or ruined a pair of clothes. Well my glasses accidently got ran over by the car yesterday, I guess things just kind of even out.

Monday, November 1, 2010

The great pumpkin

At the beginning of October I went with my family to a really great pumpkin patch.
We go every year. Mrs. Pack was my 504 helper in kindergarten and first grade and her family owns the patch. We took our dvd player and watched the Charlie Brown movie about the Great pumpkin.

It was awesome, then we bought a few pumpkins and some squash and went home. I didn't really think much about the great pumpkin after that until last night. We heard our door bell ring and when we went outside we found THE GREAT PUMPKIN on our porch. It was carved and lit and everything!

I think he came to our house because we watched his movie in a real patch.

I am so glad we did not watch a movie about a ghost or vampire in the field.

Wednesday, October 27, 2010

Skin camps!

There are 2 of them that I go to, the real names are USEB camp and Camp Wonder but I just tell my friends it is skin camp so they know that I am not talking about scout camp. Camp wonder is ran by www.csdf.org it is in California and it is free to me, I like the guys that stay in my cabin and the doctors too. I get to swim and play ping pong and swim and go to professional baseball games. My mom gets to hang out with the other eb Zachs mom and they hang out at the hotel and in San Francisco. Last year they paid someone to paint their toe nails. I love the counselors and they even have prom night. It rocks seriously. The next is USEB camp in Park City Utah, it is all run by adults with EB. I learned how to play the drums this year and I got to ride the coolest bikes. My mom is too tired to put up any pictures but tomorrow you will see how awesome they are when my mom finally puts the picture of camp up. We were too busy today because we had our school Halloween party and night time carnival. Plus I got to rent a movie!

My new belly button

When I was 3 I started getting strictures in my esophagus, these strictures require a short surgery to make them pop out. My parents decided that it would be a good time for me to get a "new belly button" or a gtube. We were all scared, we wished we didn't need it. Once we got it we realized how silly we were to worry about having one because we LOVE it. It is the greatest thing that ever happened. I had never slept through the night until I got it, because I was always hungry. All of my super nasty medicine goes straight through the tube so I don't have to taste any of it! I am growing huge because I get such great nutrition through it. I am 72 pounds and 56 inches tall. I have always been the tallest in my class. Eating was stressful before I got it, because I always had sores in my mouth and esophagus but my body still needed tons of nutrition. This is a picture of me in the hospital right after I had the surgery. I wanted to go on wagon ride but I was nervous about having my tube on so when my mom picked me up I told her "be careful and good luck" she laughed.

I liked it so much that a year later my Uncle David and Aunt Sandra and cousins Amos and Isaac came over and we had a birthday party for it. My cousin Isaac made a drawing of my body and we played "pin the gtube on me".