Cornelia deLange Syndrome (CdLS) is rare...you probably have never seen another child like me. Please click on the links below to travel through my pages and learn a little about me and my family.
As of July 2002, I am 5+ years old, and I weigh 36 pounds. The last time the doctor measured me, I was 38.5 inches long. I wear a 5T (or so) in clothing, and I am growing wonderfully! This may seem small to you, but for my syndrome, I am a really big girl. :)
School starts on August 4, 2002 and I can't wait. I love going to school. My favorite parts are "circle time", where I love to listen to everyone sing, and strumming Ms. Tina's guitar in Music Therapy. I also enjoy rolling around in my "stander" ~ a special walker for big kids.
At home, I am working on my Oral-Motor skills. I am now allowing Mommy to brush my teeth regularly, and I don't even cry very much! There is hope for eating in the future! :) I can sign "more" and love to ask for "more" of anything I like.
My health at this time is excellent, other than the normal colds, ear infections, etc. that go along with being in school.
Want to read about my feeding pump? It is the Zevex Enteralite, and it is awesome! Mommy and Daddy received a grant from The Holly Tree, Inc. to help pay for the pump. Thank you, Aunt Karin! To read more about the g-button, please visit
my button page! There is a really cute photo of both of my buttons (g-button and
belly button) on this page! *smile*
I had an ABR (a special hearing test) on April 28, 1999. This test
showed that I have a moderate hearing loss. My new hearing aids came in on
July 23, 1999. UPDATE: I hate my aids now. I won't wear them and take them out whenever possible. We have an appointment scheduled soon, so watch this space for more updates!
To read about my birth, and the early challenges I faced with my
family, please click here. My
mommy and daddy wrote this online "article" for the CdLS Online Support
Group in November 1998 as a way to tell others about how I was born.
We had a wonderful visit with Granddad and Martha, Aunt Shannon and Uncle Mike,
Aunt Sissy, Granny, Great-Papa and Nancy, Karin and Larry (and all their kids),
and my "Aunt" Gayle from June 1-16, 2000. We also attended the Virginia Family Gathering for families with CdLS.
To see a few photos from the Gathering,
Do you want to see photos from our Halloween party on October 31, 1999? You do? Well, then click here. Mommy uploaded a few photos on November 8, 1999, just for you!
Mom hasn't update photos in a long time, but she wanted you to know that she will be doing so very soon. She just hasn't had time!
Again, thank you for taking the time to learn about me and CdLS. I hope that you have a wonderful day!
I painted this tree for my Mommy and Daddy at school, all by myself!
We'd love to hear from you!
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Button by Anonymomma.
Click the button above to voice your support of those who are different than you are...vow to stop the hate in your community and in your life!
WOW...our site was chosen by Jasc Software as a winner for the month of December 1998 in the Jasc Showcase program! Thanks to Jasc Software for the honor! You can follow this link to see other neat pages made with Paint Shop Pro 5...and the current month's winners!
Page last updated 9/14/02.