Learning to Live with Cerebral Palsy

As we watched Kaitlyn grow, we quickly began to realize what having CP meant for her. Here's a snapshot...

• She wouldn't start crawling until she was 15 months. At that time, she didn't crawl like a typical kid. She would use her forearms to propel herself across the floor with her legs dragging behind her. This is actually called "army crawling" (picture a soldier crawling under barbed wire).
• At 2 & 1/2, she still was unable to walk unassisted. However, she could pull herself up using furniture, and she could walk with the assistance of a little walker.
• She would need to wear braces on her legs to help keep her heel stretched, and to help keep her from toe-walking.
• Although the type of CP she has effects the lower extremities due to the tight muscles in her legs, there is also an adverse effect on her upper body. Kaitlyn has very weak trunk muscles. Therefore, her balance, coordination and ability to sit or stand are impacted.
• Remember how I mentioned that in the NICU Kaitlyn had trouble with her feedings? Well, it turns out that would continue into childhood. Kaitlyn exhibits lots of trouble swallowing liquids. I noticed that she coughs and chokes nearly every time she drinks. A video swallow study would show that Kaitlyn is aspirating liquids into her lungs. This is particularly dangerous when drinking milk or juice, because the fat in milk or the sugar in juice will sit in her lungs, and inevitably cause infection and permanent lung damage. We now put a thickener into all of her liquids to prevent her from choking.

Those are just a few of the things on a long list of challenges that run through my head each day. What you won't see on a list anywhere is the amazing determination, fortitude, and strength Kaitlyn exhibits to overcome these obstacles. I am amazed at how hard she works just to try to keep up with other kids. She does it day in and day out without complaint. Instead, she manages to put on a huge smile, and tackle the world head on. She is truly an inspiration to me.

PICTURES OF WHAT LIVING WITH CEREBRAL PALSY LOOKS LIKE - HAPPINESS, FUN, SMILING, PLAYING - OH, AND THE ADDITION OF SOME BRACES AND A WALKER!


Kaitlyn's first "DAFO's" (braces) - September 2005


Loving life! Halloween 2005.

Kaitlyn & Daddy - April 2005

Cute baby!


Kaitlyn's first walker! December 2005