First of all, Habbo is in the UK and getting refund out of them will be impossible. They won’t even cancel his account because they say they will only deal with the actual owner of the account. (I sent them a scathing email about that one, though I suspect it will do no good). We’ve asked Sprint to block any further premium texts to all the phones on our account. Lastly, Habbo knows their users are all kids and they don’t have credit cards, BUT the vast majority have cell phones with unlimited texting service. They know they are easy to lure in with the promise of “free coins” and the kids only know unlimited texting. As a parent, I never dreamed we could be scammed through our cell phones this way. My research on the internet revealed that this is a common Habbo scam.

In any case, the only way I can stick it to Habbo is to make sure as many people know about this scam as possible, so I’m letting you know. If you have kids ask them if they are using Habbo, and if they are, ban them from it before you get a surprise in your cell phone bill.

By 11 am Christmas morning, Baylee fell asleep in a chair and didn’t get up until late afternoon. With Baylee asleep during the day our house was quite peaceful yesterday!

Note to self for next Christmas–don’t tell Baylee tonight is the night Santa comes! She can wake up and be surprised. We’ll all be better rested.

Happy New Year everyone!

I have sadly neglected our blog for a very long time, but I assure you our adventures with Baylee have continued without interruption! Thank you to all who have sent snail mail Christmas cards, photos and newsletters! I cherish them all and love getting them in the mail. Unfortunately, time got away from me this year as it has in the past few years and my Christmas card will have to be this blog post.

2009 was good to us! It was a year of work and more work, but we are very fortunate in this economy to have the opportunity to work. I never, never complain about being overworked anymore.

Baylee is doing well, but her behavior is always a challenge. She has thankfully been very healthy and continues to make progress. She is in 8th grade and has a great team working with her at school. After 5 years on a waiting list for services that we were told was 10 years long, we got the phone call in September we really didn’t expect for another 5 years. Baylee will begin to get services (an in home caregiver) starting in a few weeks. We are starting out slow with just Saturday morning help, but will go from there and slowly build in more hours as she gets to know her new caregivers. We hope that in the next 3-5 years that we’ll be able to transition her to a group home. I think much of her behavior stems from boredom, and the extra services will keep her busy with numerous activities and they are also required to work on living skills with her, so I expect we will see much growth in her in the next few years. It’s very exciting….for her and for us. In the meantime Baylee continues to keep us on our toes. She customized our ceiling the this week by pouring water all over the sink counter top in our upstairs bathroom. As we were watching TV it began to “rain” in our dining room! At first, we could not figure out where it was coming from until we realized the sink top was wet. The water just ran down the wall slowly, into the baseboard and then pooled on the ceiling above our dining room until it burst through. The fun never ends! Neither one of the boys will admit to who left their bathroom door unlocked, incidentally. Baylee continues to enjoy playing outside (when the weather is nice, she’s a fair weather person), eating and playing with her “babies” (stuffed rabbits and dolls). She still believes in Santa is obsessing over his visit tonight. She calls Santa the “Ho, ho, ho”. Santa is bringing her her yearly iPod (hopefully it will last longer than last years iPod!), a new baby doll and some Aeropostale clothes. She is 13, and like a typical 13 year-old she loves new clothes. I love those glimpses of normalcy with Baylee!

Lukas is 17 now, and a senior in high school. His plans are to attend the University of Nebraska next year so will be staying in town, and probably living at home since his help with Baylee is often needed. He’s thinking about pre-pharmacy, radiology or perhaps some sort of engineering. He’s still involved in band and plans to try out for the Pride of Nebraska Marching Band this summer. It’s very competitive to get in and very few make it, so keep your fingers crossed for him. He is working at Hy-Vee and when our new store opened in October of 2008, he transferred to the new store and works for Dave. He works a lot of hours and keeps very busy. Unfortunately, he wrecked our trusty van of 15 years the other day. His car was in the shop so we let him drive the van and as many 17 year-olds do (present company included), he made an error in judgment. Thankfully no one was hurt! We signed the van over to the junk yard today. (RIP trusty Ford….we had many memorable travels in you.) Unfortunately, the news on his car was not good either. The transmission is fried, so we are junking that as well. Down two cars in one weekend! We found a wonderful used car from a friend who had just purchased a new car, so guess what Lukas is getting for Christmas? A 2000 Dodge Intrepid. The car is absolutely immaculate, so he is thrilled to finally get his wheels back.

Colton is doing great. He’s in 7th grade now. He was on the Cross Country team and is proving to be a talented runner (my next TeamCdLS recruit!). He also plays the trumpet in band and loves to play video games. He’d do that all day if we let him. We finally had to extract his reimplanted front tooth that he lost in a bike accident a few years ago. They sawed off what remained of the root and attached it to his braces. He thinks it’s pretty cool that he can spin it around on the brace (ewwww), but he’s broke it off the braces at least twice now and he hates looking like a hillbilly when he has to wait to get into the orthodontist to have it put back on. When he’s fully grown he will be able to get an implant, so for now he has to deal with the inconvenience and the gross out factor. Next month he has oral surgery to expose an impacted tooth that is high up in his gum and laying sideways. He can’t get a break in the teeth department! He’s having a lot of anxiety about the surgery, and I don’t blame him, though it is a really minor procedure. I don’t think he’ll ever have any affection for dentists. I told him if he makes it through the procedure bravely, we’ll go to the Sprint store afterwards and get him a new phone since his contract is up. Hopefully that bribe will take care of the dramatics and anxiety we endure with most dental procedures with him!

As for me, after working a day job and a night job since October ’08, I decided to give up my school job this fall and work for Dave at Hy-Vee only. I like just having one job now. I think I’m starting to get my life back and never realized how exhausted I was all that time, but you do what you have to do. I continue to sub at the school now and then. It works out well because Dave writes our schedules which ensures that either Dave, Lukas or I am home with Baylee when she’s not in school. We are blessed to have such flexibility…not every family with a child with special needs is as fortunate.

Dave is still with Hy-Vee and our new store is continuing to bless us with brisk business. Our kettle corn business had the best ever summer and we can’t wait to start it back up May. Dave’s ankle is still healing, though I think it will always give him some trouble. He’s very cautious on the ice now! He still works a ton of hours, but I don’t think Dave would be happy unless he did. He doesn’t really have any hobbies since he works so much, but he’s a political junkie and keeps up on what is going on all the time. He’s still is, and will always be, a hard core conservative.

Tonight we are settling in as another big winter storm hits us. The wind is terrible and the temperatures are absurdly cold! We aren’t able to make the trip to church tonight because the roads are getting bad and we can’t risk another car. We were planning an extended family Christmas with Dave’s family on Saturday, but it looks like some family members may not be able to make the trip because of the weather. It is very disappointing but it is what it is. Hopefully we can find another time to get together soon. I hope all of you in the path of this storm are safe and warm!

Merry Christmas to all and a Happy New year! We hope 2010 brings you many, many blessings!

Christy, Dave, Lukas, Baylee & Colton

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

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

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.

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!

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.

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.

‘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.