Monthly Archives: December 2006

Our Christmas Newsletter (Blog Challenge)

Christmas BAnner

Hello family and friends! We’ve decided to save some paper and put our Christmas newsletter on our blog this year. It’s time to move into the 21st century. We’ve been blogging for awhile as a way to raise awareness of Cornelia de Lange Syndrome. We do it so people can have a peek into our lives and get some up close and personal information about the syndrome, especially for the new parents who come to the web for the first time to learn about the obscure syndrome their babies have just been diagnosed with.

The year 2006 for our family was uneventful. Our mantra still remains–work, eat, sleep, repeat. Unfortunately, the sleep part is a very small part of our lives these days! We are still delivering newspapers and getting ever closer to our goal of becoming debt-free. We are going on our third year of paper delivery in February and our progress to date is over $58k paid off. We are fortunate to deliver papers in our very own neighborhood and have a very large route by Lincoln Journal-Star standards.

Dave is still with Hy-Vee and going on his 23rd year. His store is relocating to a new store in early 2008, so that makes our goal of becoming debt-free even more pressing. Nonetheless, he is looking forward to the change after being in the same store for over 15 years.

We are still going strong with our kettle corn business and sell at our Farmer’s Market May through October. The work is hard and especially hot during July and August, but the rewards are great. Our customers tell us they love our product, so we’ll keep popping as long as they’ll have us. We are fortunate to have a very lively and festive Farmer’s Market in our historic Haymarket in downtown Lincoln.

The kids are all doing fine. Lukas is 14 now and has a real job! In May, he got a job as a “grocery cart getter man” (from the Real Man of Genius commercials) at where else but Hy-Vee. He also helps us with our kettle corn business and delivers newspapers, so he’s learning a good work ethic. He’s doing fine in school and is participating in an Information Technology Focus program that Lincoln Public Schools offers. He goes there half days. I pick him up after lunch and take him there every day. Our poor car is racking up the miles, but he’s very lucky to have such a wonderful program available to him. If you ask him what his highlight of 2006 is, he’d say the Nintendo Wii he scored after waiting in line for it for 12 1/2 hours at Walmart.

Baylee is doing well. She is now 10 years old. We still struggle constantly with behavior issues, but she remains healthy and happy. She has a wonderful team at school where she’s in 5th grade. Her classmates are equally wonderful and kind to her. She still is basically non-verbal, but she now has a Dynamyte augmentative communication device that she knows inside and out. The very biggest 2006 highlight in Baylee’s life is that SHE IS FINALLY POTTY TRAINED! A day we thought would never come, but it’s here! She is truly a big girl now. Next year she will transition into middle school, so hopefully her school experiences will continue to be positive.

Colton is in 4th grade and is 9 years old. He loves to write and excels in spelling. He loves to build things with Legos and erector sets. He says he wants to be an architect. The front tooth he knocked out in October 2005 is still hanging in there believe it or not, but the dentist says eventually it will have to be replaced with an implant. We expect it could finally fall out on it’s own at any time, and that thought isn’t exactly pleasant. Once it falls out, they will replace it with a “flipper”…basically a retainer with a fake tooth. He thinks a flipper would be “the coolest”. Colton says he has no highlight of 2006. 😉

I’m still working for Lincoln Public Schools as a “lunch lady”. It’s a great job that fits with my role as Baylee’s caregiver. Next year will be my last year serving on the CdLS Foundation Board of Directors where I still serve as secretary. I still help with the Foundation website maintenance as well. We hope to attend the CdLS International Conference in Niagra Falls, Canada in late July if paper routes and kettle corn allow us to get away.

We would like wish all of you peace, health, happiness during the holiday season and throughout the coming new year! Merry Christmas!

Dave, Christy, Lukas, Baylee, and Colton

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The Best Christmas Gift Ever!

Xmas Lights

I feel like I’m going to jinx myself if I say this, but I think…..after 10 long years…..Baylee is finally potty trained! This is the very best Christmas gift we’ve ever received!

This is truly a huge thing for a child with CdLS. I never thought it would happen. At the very most, I thought she’d be “timed trained” with me taking me to the potty every couple of hours for the rest of our lives and buying adult diapers eventually when she is bigger.

But she has amazed us all! She has recently started going on her own. We’ll be going about our activities and hear the toilet flush and realize it was Baylee going all by herself…..responding correctly to the “call of nature”.

It is truly a good day. She is such a big girl now.

Baylee, you are amazing.

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