I haven’t posted much lately because I’ve been working so much, but I’m off work from my “day” job for the summer, so I plan to devote more time to my computer endeavors. I still have the “second” job and the family business to run this summer, though, but I hope to keep posting more of Baylee’s adventures soon. In the meantime, I’ve created a “mobile” version of this blog for those of us who have little time to actually sit down at the home computer and instead rely on our phones to connect to the web while we are on the go.

The mobile address for this blog (if you care, that is!):

bayleesadventures.mofuse.mobi

Here’s to enjoying every moment summer has to offer!

Christy

Today is Cornelia de Lange Syndrome Awareness Day! There are many children who have CdLS but either lack a proper diagnosis or do not realize support and information exists. Though we strive to reach these people and their families every day of the year, today is the day we make extra special efforts to spread information about CdLS to everyone who may know a person with this syndrome. Please take a moment to learn a little about CdLS today and perhaps help us find one child who needs information and support.

For more information on CdLS, please visit The CdLS Foundation website. Baylee was born 13 years ago, just as the internet was becoming mainstream. Due to the combination of a pediatrician who was also a pediatric geneticist and the fact that we were early adopters of the internet, we were very fortunate to have found the Foundation with days of Baylee’s birth. Other families aren’t so lucky, even in 2009. Mild cases of CdLS are most often missed by doctors and other professionals, and in many cases, regardless of the severity of the case of CdLS, misinformation is often given to families (including ours) which is probably the greatest tragedy of all. One of goals of the CdLS Foundation is to make sure accurate information is available to all families from the moment of birth and throughout the life of the person with CdLS.

This year the Foundation has a goal to raise $1000 in honor of CdLS Awareness Day. At the time of this posting, $930 is still needed toward this goal. If you’d like to help us reach our goal and help people with CdLS like Baylee, please visit:

CdLS Foundation, Inc.

Your contribution is tax deductible. Any contribution you can make is deeply appreciated.

CdLS Gathering, March 2009

IMG_0795

Originally uploaded by baysmom3

I did a little CVS’ing today.

I started with a $5 ECB from purchasing Oil of Olay Pro-X last week (or the week before?). In addition there was an Oil of Olay $25 rebate if you bought $50 worth of Pro-X. I also had a $5 Olay manufacturer coupon so that was a great deal on some pricey stuff. I hope it makes me look younger.

Today I purchased:

1 Lysol Disinfectant Spray (the February “crud” is in our household so we need to de-germify). $3.50 with a $2 manufacturer’s coupon, final cost $1.50

1 Clorox Anywhere Cleaning Spray $2.50 with a 75 cents off manufacturer’s coupon, final cost $1.75

3 Suave Body Washes (I chose the remaining bonus sizes), $1.99 each with a 75 cents off two coupon, final cost about $5.25 and then I earned $2 ECBs. Final cost $3.25.

2 Dove Deodorants, $3.79 each with a $1.50 off manufacturer’s coupon and I earned $2 ECBs. Final cost $4.08.

1 Herbal Essence Shampoo, $2.99 and $1 ECBs.

1 Ultrabrite toothpaste, bargain priced at $1.49, just ’cause I needed it.

Then I used my $5 ECB from the Olay deal.

My total for all items was $15.36. After earned ECBs, I got it all for $10.36.

No home runs today, but I felt pretty good about my haul.

I know you’ll think this is the weirdest thing to be addicted to, but I thought I’d share it because I think it’s half-way healthy. We sell it in the Hy-Vee Kitchen. A lot of people were buying it and telling me how good it was, so I tried it and I was hooked. It’s very easy to make, but you can always buy it at Hy-Vee, too.

It’s kind of a pretty salad as well. Next time I make it I’ll post a photo. The amounts of the ingredients are approximate. This recipe isn’t rocket science, so if you like more of an ingredient or less of an ingredient, feel free to adjust.

Ranch Cottage Cheese Salad

1 24 oz carton of your favorite cottage cheese brand (use a low-fat version to make it healthier and buy it on sale, of course!)
1 pkg grape tomatoes
Chopped green onions
1/2 cucumber diced
1 pkg dry Hidden Valley Ranch Dressing Mix (you won’t need the entire package)

Mix cottage cheese and veggies. Add dry ranch dressing mix to taste. Enjoy without guilt. It’s good for you!

Stealing this idea from Facebook, the CdLS-KIDS Blog Challenge this week is to write 25 random things about our child with Cornelia de Lange Syndrome.

1. My child with CdLS is Baylee, and she is 12 years-old.
2. She was diagnosed within a few hours of her birth.
3. Baylee loves to eat…and eat….and eat.
4. She’s a skinny little thing. I don’t know where she packs it.
5. Baylee loves swimming and taking baths.
6. During the summer she lives to go to the neighborhood pool.
7. Baylee usually wets her pants at least once a day.
8. Baylee has killed several iPods.
9. Baylee loves to watch the movie “Lady and the Tramp”.
10. She loves baby dolls and always has one with her at all times except when she’s in school.
11. Her baby doll must go up on the highest shelf in the laundry room every day before she gets on the bus for school.
12. Baylee loves shredded cheese and spreads it everywhere in our house.
13. Baylee loves her grandparents and gets really excited when they visit.
14. Baylee must have her TV on all night.
15. Before she walks out the door to the bus in the morning, she has to run in the kitchen and ritualistically clack her heals together (think “There’s no place like home, there’s no place like home) against the dishwasher before she leaves.
16. Baylee hates to have her hair combed.
17. Baylee flooded our basement once.
18. Baylee has walked on our roof.
19. Baylee has climbed a six foot fence and escaped our yard on her 8th birthday. She was found four blocks away and she crossed a 4 lane road to get there.
20. Baylee thinks she is the funniest person she knows (we think she’s pretty funny, too).
21. Baylee hates shoes.
22. Baylee hates hugs! But she will give you one if she wants something from you and you tell her you’ll do it for her if she gives you a hug.
23. Baylee knows some sign language.
24. Baylee loves tortilla chips and hot salsa…the hotter the better.
25. Baylee is very empathetic and acutely feels other people’s joys and pains.

In this new, devastating Obama economy, being frugal is even more important!

This week’s theme is groceries. If you live in the 7 state Hy-Vee territory, today is their Friday the 13th sale! There are some great deals to be had.

Midwest Country Fare Ice Cream (4 qts) $2.88
Hy-Vee Cereal $.99
Hy-Vee Fresh Sliced Pork Steak (LOL…ironic don’t you think?) $.99/lb.
Bakery Fresh Hamburger Buns $1.13
Not Less Than 80% lean Fresh Ground Beef $4.77
2 Entree Chinese Meal $3.99
Palermo’s Classics Pizza 6 for $10
Pilgrim’s Pride Boneless Chicken Breast $4.99
Hy-Vee Water $2.99 (if you absolutely NEED to have bottled water)
Dole Iceberg Lettuce $.69
Hy-Vee Butter $1.48 (yummm….REAL butter!)
Nissin Top Ramen Noodles $.13

There’s some coupons in the print ad for Midwest Country Fare Brown or Powdered Sugar for $.99, Sour Cream for $.48 and bagged Garden Salad for $.69.

Also pick up a Hy-Vee coupon book at the store entrance. My favorite deal in this book is a code for a Free Red Box rental. A free movie is very frugal entertainment! Just be sure you have time to watch it and return it the next day or you’ll be charged for a second day rental.

You’ve probably noticed that Hy-Vee’s corporate print ad (the one that likely comes with your newspaper) has been much smaller as of late. They have moved towards on-line ads which are much larger. I’m not sure why they’ve done this, but skyrocketing printing costs come to mind as well as the fact that newspaper readership has dropped. You should always check the online ad for a much wider selection of good deals as you make your shopping list. It is available at:

http://www.hy-vee.com/weeklyspecials/weeklyspecials_selection.asp

Choose to view the “online ad”. As far as I can see the online ad version includes all the items included in the corporate print ad as well as all the additional items, so there’s no need to print both versions if you do not have the print ad.

You can download it and print it to make it easier to create your grocery spending plan.

In this era of unprecedented, irresponsible spending, we might be wise to ponder these quotes:

‘Here’s my strategy on the Cold War: We win, they lose.’

‘The most terrifying words in the English language are: I’m from the government and I’m here to help.’

‘The trouble with our liberal friends is not that they’re ignorant; it’s just that they know so much that isn’t so.’

‘Of the four wars in my lifetime, none came about because the U.S. was too strong.’

‘I have wondered at times about what the Ten Commandments would have looked like if Moses had run them through the U.S. Congress.’

‘The taxpayer: That’s someone who works for the federal government but doesn’t have to take the civil service examination.’

‘Government is like a baby: An alimentary canal with a big appetite at one end and no sense of responsibility at the other.’

‘It has been said that politics is the second oldest profession. I have learned that it bears a striking resemblance to the first.’

‘Government’s view of the economy could be summed up in a few short phrases: If it moves, tax it. If it keeps moving, regulate it. And if it stops moving, subsidize it.’ (My personal fave.)

‘No arsenal, or no weapon in the arsenals of the world, is as formidable as the will and moral courage of free men and women.’

‘If we ever forget that we’re one nation under God, then we will be a nation gone under.’

Who said these?

Ronald Reagan.

Wise man was he.

If you care about your children and their future opportunities, email your representatives & senators and tell them that you think the “spending bill”, aka “Porkulus” package was a very bad idea and next time you’ll elect representatives that reflect your values. It is our children and our grandchildren who will ultimately pay the enormous price of the new governmental irresponsibility.

This week’s blog challenge:

What kind of jerry-rigging or child-proofing have you done at home to meet the needs of your child with CdLS? This could be for tube-feeding or any other medical needs, or any other kinds of modifications you have made. Add pictures, if you can.

We have made many “home modifications” to accommodate our “adventures” with Baylee! However, I’d like to add the disclaimer that as she has matured, we’ve been able to relax many of our Baylee-proofing measures.

I think the best thing that has brought peace to our home is keypad locks. We have always needed to keep Baylee out of certain areas of our home to prevent expensive damage that Baylee likes to inflict on our home. Due to her obsession with running water and bathing, we need to keep her out of the bathrooms that have showers or bathtubs, so we first tried key locks. Unfortunately, the keys were always disappearing and were never handy when we had to get into a bathroom! We then resorted to keypad locks which require a code to be punched in to open a lock. They work great! The downside is that they are very expensive–usually $80 to $100 each. When she was younger we felt that we might need one on every door in the house, but now that she’s older she seems to be better behaved. We currently have two keypad locks in service–one on our laundry room door that keeps her from fulfilling her obsession to mess with our washer and dryer (they are too expensive to let her break them!), and another on the door to our utility room in the basement. She once flooded our entire basement by turning on the faucet on the utility sink, and she also likes to turn off our furnace and water heater. It’s no fun to wake up to a 45 degree house on a January morning and find you have no hot water either!

We have also had to chain our windows on our second story so that they would not open all the way. One day a neighbor knocked at my door and told me Baylee was walking around on our roof. Much to my horror, she had crawled out her bedroom window and was walking all over the roof. Grandpa came and chained all the crank out windows so that they wouldn’t open enough for her to squeeze out.

We have since gotten new windows and now it seems she is terrified of heights. We got them in July, and she hasn’t even removed a screen. We also splurged on getting the blinds between the glass in every window in the house. We could never keep curtains in her room because she always tore them down, and she always “slimed” our roller shades with her grimy hands. Now I have somewhat attractive windows, though they usually have smudges on them as Baylee can’t resist leaving her mark on the windows. At least glass is easy to clean.

Baylee has traditionally been a fair-weather wanderer, though she has grown lazy in her “old age”, and does it far less. This time of year we don’t have worry about her escaping the house and going on a “walk”, but during the warm weather months it’s sometimes an issue. We have the front doors chain locked when she is home and she does have free access to the backyard which has a six foot fence (which btw she could climb when she was smaller and more agile). We keep the gates locked with a padlock to keep her brothers and neighborhood kids from leaving them open and giving Baylee and escape route.

Though we have retired most of our cabinet locks, the very best locks and the ONLY ones Baylee could not defeat were “tot locks”. They are magnetic and require a magnetic key to open the lock. They are fool proof. But don’t lose the key or you are screwed. Thankfully spare keys can be purchased separately from the locks. I think I have at least 5 tot lock keys now.

We also had to replace the glass in her dresser mirror with plexi-glass when she ripped the mirror off and broke the glass everywhere. Thanks Grandpa!

Lastly, we have a faucet lock on our spigot in the backyard. It was not something we could find locally because we don’t have water restrictions here so I ordered it from the internet. Traditionally these locks would be used to keep people from stealing your water, but we use it because Baylee would run the water constantly when she’s in the backyard. I was sick and tired of running out to shut off the water. She was killing my flowers and spraying the hose into our sunroom, so we took care of that annoying little behavior. Sorry Baylee. Yes, during the summer we do allow her a reasonable amount of “water play”, but since we aren’t independently wealthy we need to keep our water bill in check!

Today we have a rare 60 degree day in January in Nebraska. Baylee’s going outside, as my mom used to say, “to blow off some stink”.

I admit it. I’m officially a Facebook addict.

I joined Facebook about 6 months ago and for quite awhile didn’t quite get what was so special about it until people I’ve known throughout my life started joining Facebook and “friending” me. I’ve “friended” people I see every day and I’ve friended people I haven’t seen in 25 years (classmates, neighbors, etc). I’m in touch daily with a huge portion of parents in our Cornelia de Lange Syndrome worldwide community through Facebook and we’ve created a “CdLS-KIDS” Facebook group for our email support list. Most importantly, I’ve connected with family members I almost never see anymore….brothers, sisters, aunts, uncles, cousins and their kids. We get frequent photos and updates on how their families are doing and they get to keep up on how we are doing. It’s truly amazing how beneficial social networking can be!

I think I’m up to 109 “friends” now. I’ll concede that I haven’t actually met some of my Facebook “friends” in real life, but we share a connection with our kids with CdLS.

I read the other day that Facebook is now the most visited site on the internet. However, I also read that the average Facebook user is generally a 20-something and that people my age aren’t all that into it. I find it hard to believe because most of my Facebook “friends” are around my age and many are even older, including my 60-something MIL.

If you haven’t jumped on the Facebook bandwagon, you should try it. You’ll be surprised at the reconnecting with friends that family that you’ll be able to do.

Can I be your friend?