Monthly Archives: January 2009

CdLS Blog Challenge

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”.



Filed under CdLS-KIDS Blog Challenges, Cornelia de Lange Syndrome

Card carrying Facebook addict….

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?


Filed under Cornelia de Lange Syndrome, Everyday stuff

Special Exposure/Wordless Wednesday

Baylee doing what she loves best--playing with WATER at the Wasserbahn water park in Amana, Iowa, on January 2, 2009.

Baylee doing what she loves best--playing with WATER at the Wasserbahn water park in Amana, Iowa, on January 2, 2009.


Filed under Cornelia de Lange Syndrome, Special Exposure/Wordless Wednesday