A Closer Look at SMC3: Kinsley
When I was expecting Kinsley, I had numerous sonograms and even a 3D/4D ultrasound, but CdLS was never detected. My obstetrician-gynecologist said, “She’s just a petite baby, like her momma.”
When Kinsley was born at 36 weeks, she weighed 4 pounds 10 ounces, was 16.5 inches long and had a cleft palate (which was repaired this past April).
We knew Kinsley had a syndrome and were relieved when we nally knew its name. Testing was done in December 2013, and results came back February 2014. She wasn’t clinically diagnosed; the genetics doctor wanted testing before fully diagnosing her.
Kinsley, who is four years old, has asthma, GERD, a tethered cord, microcephaly, short stature, micrognathia, and vesicoureteral reflux (kidney reflux). She has a gastrostomy-button and eats some foods (she loves macaroni and cheese, Spanish rice, Cheetos, scrambled eggs, and bean and cheese tacos), but has oral aversion to many items (she will not touch Jell-O, pudding, applesauce, whip cream, or mashed potatoes).
As with many kids with CdLS, she has sensory issues. She hates socks and shoes, unless she can chew on them. She likes bead necklaces, and she likes to turn her tricycle over and spin the tires and lick them. She loves music and will sing along and dance to every show on the Disney Jr. channel.
Our biggest challenge has been keeping her well, but also not keeping her in a bubble. All kids need to play, but we have to be very careful.
I’ve learned never to be surprised at what she can do or can’t do; every day Kinsley amazes us with something different.
