CdLS Conference 2008, Chicago, IL

Baylee & Mike

Originally uploaded by baysmom3

We just returned from the CdLS Conference in Chicago. This year it was a last minute decision to attend. I knew we couldn’t stay away and the chips fell into place for us to get there so how could we say no?

It was productive, informative and lots of fun, but most of all it was an opportunity to feed our spirits. We had grown weary over the past year with Baylee’s behavior issues and most of all, we needed to be in a place where our spirits could be rejuvenated. A place where Baylee is “normal”. A place where we wouldn’t be judged. A place where we can laugh together. A place where others are living our lives.

We’ve come back renewed. We have new ideas on how to help Baylee. Most of all we’ve come back reminded that we aren’t alone. As Julie Mairano said in her speech at the Saturday night banquet….when we see each other, we know we are a part of each other.

How will we wait two more years to feed our spirits again? We’re already looking forward to Dallas 2010!

Thank you to all who made the 2008 CdLS Conference possible! We appreciate you and we are very grateful.

Baylee’s sneaky webcam photos!

Baylee’s sneaky webcam photos

Originally uploaded by baysmom3

Baylee is a pretty smart cookie sometimes. She is amazingly computer savvy when she wants to be. She’s figured out how to Skype people when we aren’t looking and obviously, she’s figured out how to use the webcam and Photo Booth software on our iMac as well. She knows how to start up the software and click the little red camera icon to snap the photo. On top of that, she knows how to work the camera! You go girlfriend!

Take a look at all the photos she snapped of herself….some are priceless! LOL Link below–>

Baylee’s Self Portraits

Skype fun!

Dave & Baylee talking to Grandma

Originally uploaded by baysmom3

If you haven’t tried Skype video chat, you should. We’ve been having great fun with it! Baylee thinks it’s fabulous and she even makes calls on her own when we’re not looking. Though she’s not a great conversationalist with whomever she calls, she looks cute on camera.

We have no family here so Skype is a wonderful way to connect with them. Dave’s sister, Sharon, brother-in-law Daniel and newest nephew, George, live in Melbourne, Australia, and it’s been fun to re-connect with them and watch our new nephew grow….something we’d miss without Skype.

Best thing of all, using Skype to make video calls is free. What did we ever do before the internet?

Yumm….summer indulgence

Yumm….

Originally uploaded by baysmom3

Baylee loves food. One skill she’s never lagged in is eating!

She also loves spicy food. Chips and salsa, the hotter the better, are her favorite. Our latest indulgence is also Root Beer in a frosty mug! There’s nothing better to have on a warm summer evening.

We recently discovered Sprecher’s Root Beer at, of all places, Menards (a home improvement store like Home Depot, for those not familiar with it). What an addiction! It was so good I went out and bought beer mugs that we now always keep in the freezer. It reminds me of the days when I was a kid and we’d go to the A&W drive in on a warm summer night, order root beer in their frosty mugs which they’d bring to your car on a tray that clipped onto your car window. Pure heaven. Now I can relive my childhood to its fullest.

Unfortunately, my kids have picked up on the creamy goodness of root beer in a frosty mug and I can’t keep the stuff around more than 5 minutes.

Good news, though, Menards had Sprecher’s in their ad today…a four pack for $2.50! I’m there baby…..gotta love a sale!

Oh, and a shout out to our farmer’s market mate who sells our favorite salsa–If You Dare salsa. Yumm!!! Baylee loves ya!

Baylee’s favorite summer activity!

Baylee’s pool 1

Originally uploaded by baysmom3

Baylee lives for the pool in the summer! We have a season pass to our neighborhood pool, but sometimes I grow weary of going every single day. We try to go almost every day, but sometimes weather gets in the way, or I just need a break. We like to go in the evenings when the pool isn’t as crowded and the sun isn’t as harsh, but then I have to spend most of the day listening to Baylee hound me–“Pool. Pool! POOL!”.

So I meet Baylee halfway and every summer I get her a plastic wading pool. We fill it up, and she spends the day slashing around in it and taking her “babies” for swims until we go to the pool in the evening. She changes in and out of her swimming suit about 10 times a day….can’t quite figure out why she just doesn’t leave it on. I also had to get a faucet lock for our spigot so she doesn’t run the hose constantly. Our ground is saturated enough with all the rain we’ve been getting….no need to make it any more marshy than it already is. Baylee is definitely not a very “green” child to have around! She’s a master water waster.

As a side note, please keep my hometown of Waterloo/Cedar Falls, Iowa in your prayers with the recent flood devastation there….I’ll take my marshy yard any day.

Blog Challenge–Summer To-Do List

There are 73 days left of summer vacation!

Our blog challenge is to create a summer to-do list to help provide accountability. Writing down goals is also a good way to ensure you reach those goals, and blogging is the new way to write. The only rule for this blog challenge was to keep the list to five items or less.

Here is my list:

1. Resume a regular running program and run a 5k this summer.

I ran the Chicago Marathon in 2003 and when I toed the start line, I had a feeling that I was probably in the best shape I would ever be in my entire life. A few months later we started delivering papers, and my running drastically tapered off into nothingness. Thankfully hiking papers is fabulous exercise and I’ve been able to ease back into running with little pain. I hope to run the Cornhusker State Games 5k with Colton.

2. Take more photos and make some photo books.

The paper routes robbed me of my scrapbooking habit. I still don’t have the passion I had for the crafty side of scrapbooking, but I’m finding creating books with an online printer is a good compromise. There’s a lot less time involved, and the results are beautiful and professional. I also want to redo our wedding album that Baylee tore apart. One common behavioral quirk of CdLS seems to be a fascination with photos and tearing them apart. Thank goodness for electronic copies of photos!

3. Prepare freezer meals from Savingdinner.com’s mega menu mailers before school starts.

I can really keep eating costs down by preparing meals ahead of time. It keeps us from eating out too much which has always been our biggest budget buster. I’d like to have at least 50 meals in the freezer before I have to go back to work.

4.  Put photos in my photo collage on my living room wall.

I’m almost embarrassed to admit this, but over a year ago I put up a photo collage set on my living room wall.  Some of the slots still have the photos that came with the frames!  Yes, I have photos of people I don’t even know on my living room wall.  I blame it partly on my laziness, but I think I’m also a victim of the digital age.  I almost never get prints of my photos anymore.  Please hold me accountable for this one.

5.  Paint my downstairs bathroom.

The can of paint has been sitting in there since last summer.  Shame on me.  I can no longer use the “I’m too tired” excuse.

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!

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!

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!

Happy Birthday Baylee!

Baylee turned 12 on April 8th!

Like many parents of kids with special needs, we have a difficult time selecting appropriate birthday and Christmas gifts for Baylee. She’s not materialistic in the least, and doesn’t really care much for “stuff”. Just give her one good “baby” to love on, and her little TV and she’s a happy girl!

We’ve always felt she needed a bike, but she doesn’t have any concept of street sense and we didn’t feel it would be safe for her. She also won’t wear a helmet. By chance I happened to catch an ad for our local bike store that featured the Trek Mod. It’s a larger big-wheel type trike. It can even accommodate adults (see You Tube for videos of adults enjoying the Mod), so we went to see it up close and personal. It turned out to be a perfect fit for her and it comes in PINK!

The genius part of it is that it has a metal frame with a hole in the back that we can hook a dog leash to and walk behind her! I’m sure the hole wasn’t meant for that purpose, but it works for Baylee. We can keep a handle on her and keep her from veering out into the street at 100 miles an hour. She hasn’t quite got the hang of using the the brake, so for now we’ll be keeping her on the “short leash”. We have some bike trails in a nearby park that don’t have any easy access to streets, so she is riding there on her own.

It was a tad pricey, but as with any Trek bike, it is quality. Any gift that helps Baylee burn her destructive energy in a constructive way is worth every penny to me!