wolfhirschhorn.org

It is so hard to believe that a year has gone by since Kaylee was first diagnosed with WHS. I had not prepared for there to be anything “wrong” with my daughter. I expected her to be small…but not quite as small as she was when she was born.

Still, she was my beautiful baby girl. I did not know about her official diagnosis until 8 days after her birth. She stayed 7 days in the NICU, and I remember the sadness of being wheeled across the maternity ward to where she was staying, always wondering about the facial features they called “dysmorphic” and worrying about whether or not they were right and something was wrong. Turns out…they were right.

A couple of months went by, and I connected with other moms whose children had Wolf Hirschhorn Syndrome (4p-). The fears that I had that she would never walk, talk, sit, know me, or worst of all– may die– were assuaged once I had access to pictures and stories of other children with WHS and could see evidence that the syndrome would not be as bad as the research said it would be. Besides, at 2 months old, she was starting to show her personality.

2 months old

By the summer, Kaylee had grown significantly. She doubled her birth weight and had grown out of her newborn-sized clothes. Still smaller than any other baby her age that we knew, she was proving to us that she was a fighter and was just starting to show us how strong she really was.

6 months old

As the year started coming to a close, she was still way behind in development compared to her ‘neuro-typical” peers. She suffered seizures and was put on Keppra; she had persistent fluid in her ears and was prescribed a BAHA hearing aid; and the low tone in her legs made it necessary to begin work with orthotics, so she got her Ankle-Foot supports. Yet, she always has a smile and a giggle to show us that she is happy, and we are always ready with a cuddle to show her that she is loved.

10 months old

I am grateful that she is able to eat orally, and now that she is on Pediasure, she is gaining weight faster than ever before. I am not sure if it is a hormone change or what, but her hair has also started growing like a weed. She now has hair that goes past her neck and even gets tangled! That seemed to happen almost overnight! She is also starting to finally cut some teeth, and I hope they burst through soon before she sucks and chews her gums completely to shreds. 🙂

1 year old!

Each of our children is unique. Sometimes, that makes the journey more frustrating, because there is this looming “IF” always surrounding them. However, it is also what makes this journey more interesting, challenging, and rewarding…if we allow ourselves to see it through that lens.

My son loves the movie The Incredibles. One of the bonus shorts on the DVD is called “Bounding.” In the animation short, a jack-a-lope reassures a lamb who has faced an unexpected change in his existence that it is all a matter of perspective. He sings:

“Now sometimes you’re up and sometimes you’re down,
When you find that you’re down well just look around:
You still got a body, good legs and fine feet,
Get your head in the right place and hey, you’re complete!”

Looking at my daughter’s face and seeing the progress she’s made this past year, I’d say he makes a good point!

How can you look at that smile and not believe that it will all be all right?