Hello! The little girl to the left is my daughter, Baylee, age 10, who was born with Cornelia de Lange Syndrome.
She was born full-term weighing in at 6 lbs. 6 ozs and was diagnosed at birth with CdLS. It’s been a never-ending adventure since that day! Baylee is very healthy and only takes Prevacid for reflux. She is basically non-verbal, but can say a few words, sign some others and uses an augmentative electronic communication device called a Dynamyte. She is mostly potty trained as far as “Number 1” goes, but she still hasn’t caught on to going “Number 2” in the potty. I suppose it will take time. It’s taken us 10 years to get to this point, so I suppose I should be patient. However, I’ve been changing diapers and cleaning up shi-shi for 10 years and I am getting weary. If I had wanted to keep doing that, I would continue to have babies!
Baylee has many behavioral issues as well. She’s a fair-weather wanderer and can climb a 6 foot fence and likes to climb out second story windows. She can run really, REALLY fast. Though it’s gotten better, there have been many episodes of pure panic as the whole family searches the entire neighborhood for her. She can sometimes be aggressive to other children and adults on rare occasions. Kicking is her aggression of choice, but she’s known to hit on rare occasions, too. She tends to size up her victims and generally picks meek, well-behaved children who are smaller than her. We have to be very careful with her around babies. There was a reason I had her little brother 18 months after her while she was still small and harmless!
She has a great sense of humor and is generally always happy. She has an attachment to baby dolls and Build-A-Bear animals, though she likes to throw them over our fence, throw them in the toilet or throw them out the car window as we drive. We go through several beloved dolls and bears a year. When she throws them out of reach or out on the highway, she gets very distraught and can be upset for hours asking constantly for her “baby”. I have no idea why she does this to herself, but I think in some weird way she likes the feeling of panic and “living on the edge”.
Baylee loves to play outside and jump on our trampoline. She spends nearly all her time in our backyard during her waking hours when the weather is good. She loves to play with her CD player and will play music while she’s outside. She loves to write on our walls with whatever writing instrument she finds that is carelessly left out.
Baylee loves to eat and never misses a meal. She would graze all day if we let her and she’s always making messes with food from scrounging in our cupboards and fridge. Cheese, yogurt, pasta, toast with jelly and peanut butter are her favorites. She also likes weird flavored things and non-food items. Soap and hand lotion are a delicacy as far as Baylee is concerned.
She also loves to swim and play in the bathtub. She would constantly run water in a sink or bathtub if we let her. She has flooded our upstairs bathroom on several occasions (our dining room ceiling has the “scars” to prove it), and this summer she flooded our basement by leaving the utility sink running and plugging up the drain with paper towels. That was one gigantic mess. We are now the proud owners of a very nice dehumidifier.
We have found that we need to lock every room in the house and because money is always an issue, we are slowly putting in expensive keypad locks on rooms that we don’t want her to have access to. The basement utility room was the first to get a keypad lock….next up, the upstairs bathroom. We are just waiting for Menards to have a sale on them! Our water and gas bills suffer because of her water obsession as well.
Baylee has great compassion for people and worries when people are hurting, upset or sick. She can be very sensitive to this….just seeing someone on crutches can send her into a worrying fit. If one of her teachers or classmates is absent, she worries about them until they return.
Baylee is quick as lightning and it’s very hard sometimes to stay one step ahead of her.
The fun never ends at our house when Baylee is around!