Meet Keri and Taylor

Keri and Taylor are very dear friends of mine.  We met while living in the same community in Washington, UT.  Soon after we met, we learned of Taylor's cystic fibrosis.  Through our friendship and time spent together, I came to realize the daily effort it takes to keep Taylor healthy.  I also came to understand that despite that effort, and the prognosis associated with cystic fibrosis, Taylor lives an active, hopeful life. I'm happy to share her story with you as told by Keri, Taylor's mom.  

Keri with daughters Taylor (left) and Kenzie (right)

My husband, Ken, and I were blessed with our first baby in June 2000.

Taylor was a "healthy" 9 lb 3 oz baby at birth.  Like all babies, Taylor lost weight within the first few days of her life.  The difference between Taylor and many other babies is that she just didn't lose a few ounces;  she lost well over a pound.  Her doctors suggested that I supplement with formula and that seemed to do the trick. . .Taylor started gaining weight.  At that time, my mind was at ease, nothing was wrong with our perfect little girl.

At five weeks old, Taylor started to wheeze every time I fed her.  As a first time mother, I was a bit paranoid and started doing some research on the Internet.  Over the next few weeks I research "wheezing in babies."  Many links came up on asthma, RSV, allergies, and a few links contained information about cystic fibrosis. I had a friend in high school who died from cystic fibrosis so I couldn't imagine that my little girl could be suffering from something so awful.  I read a few articles on asthma, but wasn't convinced asthma was causing the wheezing in Taylor.  For some reason, I continued to check out the sites on cystic fibrosis.  I read about chronic coughing and chronic wheezing.  Taylor didn't have either of those, her wheezing was very slight.  I also read about cystic fibrosis babies with failure to thrive.  With the exception of her first few days of life, Taylor was gaining weight without any problems.  I then read that people with cystic fibrosis have salty skin, so I decided to lick her head.  To my surprise, she was very salty.  Taylor had a doctor appointment the next day so I decided I would talk to the doctor about my findings.

Although her doctor thought I was way off, he ordered a sweat test for Taylor and assured me that she was going to be OK.  I few weeks later we received the dreaded call that Taylor did in fact have CF.  It was a day I will never forget.  I felt so scared and helpless.  I couldn't imagine that my baby was going to be so sick.  Every time I looked at her, I couldn't help but think she was going to suffer her entire life.

I spent the next few days doing as much research as I possibly could.  I don't think I slept much more than a few hours each night.  I had to find out how to help my baby girl!

Keri's story will be continued tomorrow. . .