Monthly Archives: May 2008

Last Day of School!


Colton & Baylee 5/30/08

Originally uploaded by baysmom3

Today was the last day of school! Eighty days of wonderful summer await us!

Baylee will do summer school, but that doesn’t start until July and runs for four weeks, two hours a day. By then, I’ll probably be very ready to put her on the bus for two blissful hours of not wondering where she is or what she is doing (or destroying!).

This summer is especially something to look forward to….for the first summer in four years, we don’t have to deliver papers every.single.day. That means we can come and go as we please. Unfortunately, gas prices will keep us from straying too far, but the freedom is exciting.

At the end of June we head to Chicago for the CdLS Conference. We missed the last one two years ago, so we are very excited to be able to go this year. Chicago here we come!

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Baylee’s new bed


Baylee’s new bed

Originally uploaded by baysmom3

We’ve been RAK’d again!

Our neighbors that live across our cul-de-sac came over one day and asked if we’d like a daybed that had been used only a handful of times. They said it would be perfect for a little girl like Baylee! We accepted and now she has a beautiful girly-girl bed. She’s so excited! It also has a trundle bed for Grandma to sleep on when she visits.

Thank you to our thoughtful neighbors!

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May 10th is Cornelia de Lange Syndrome Awareness Day!

This Saturday we will celebrate CdLS Awareness Day!

Did you know it’s estimated that some 20,000 individuals have CdLS but remain without a diagnosis or support services? With proper diagnosis and medical care, people with CdLS can enjoy a long life. It is always our goal to raise awareness of CdLS and find those people who need a diagnosis or support services. I can’t imagine what our lives would be like without the information and services we receive from the CdLS-USA Foundation.

Although the severity of CdLS differs in people, most have similar physical characteristics: small hands and feet, thin eyebrows that meet, long eyelashes, upturned nose and thin, downturned lips. Children develop both physically and cognitively much slower than their peers. Some have limb differences, missing limbs or partial joining of the toes. Common medical problems include severe gastroesophageal reflux, bowel abnormalities, heart defects, seizures and cleft palette.
Those of us in the “CdLS family” hope to provide information, hope and awareness on this special day. Please take a moment to educate yourself about CdLS by going to www.CdLSusa.org.

Yesterday, Nebraska Governor Dave Heinemen signed a proclamation declaring May 10th CdLS Awareness Day in Nebraska. The Riedmiller family graciously accepted the proclamation. You can read about it and see photos on their blog!

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