Secretary

(Read Kristen's résumé.)

Jeff and I met about nine months after I graduated from college and I was working for a medical company.  We became friends and then started dating.  We were engaged in about nine months and married almost 1 year later.  We spent the first three years of our marriage working, making money and travelling.  Then, our blessing was born and life changed.

Kaylyn was born in November of 1999 after a fairly normal pregnancy.  She was delivered via C-section after 21 hours of labor.  Kaylyn was 6 lbs. 14 oz when she was born.  She cried very little at delivery, didn’t latch on with breast-feeding and had jaundice. At 2½ weeks old she went into intensive care with RSV.  While we were in the hospital, her first UTI (bladder infection) was discovered.  It was the first of many.

Kaylyn was diagnosed with Chromosome 18p- when she was seven months old.  We had genetic testing done because she was not growing well (she had fallen off of the growth chart).  It was a tough time for us, but we jumped in with both feet.  The Registry has been wonderful in helping our family.

At eleven months old, Kaylyn started speech and physical therapy.  She continues with speech therapy today.  We also started using a catheter to empty her urine every 3 hours.   It seemed like we were always discovering something new those first few years.

We started Kaylyn on Growth Hormone when she was 1 ½ and she continues her shots today.  She has gained a lot in height, weight and muscle tone.  Kaylyn was also diagnosed with sacral agenesis, which means she is missing most of her sacrum and coccyx  (spine).  Because of this, she has neurogenic bladder (needs a catheter to urinate) and a nightly enema.  She also wears AFO leg braces to help her walk.

Kaylyn is doing fairly well in school.  She is a 4th grader and spends a little more than half of her day in her classroom being helped by her peers.  She does her reading, writing and math in the resource room.  She is learning to read but is still very behind.  Kaylyn is working about 1 year behind in most areas.  Kaylyn’s speech is great after years of intense speech therapy.  She can still be hard to understand but most of the time she is understood and speaks in sentences.  She is behind socially but doing well making friends.   Kaylyn is a Junior Girl Scout and has dance class once a week (she is in her 5th year of dance).  Kaylyn also skis and swims with Special Olympics.

Our daughter loves to ride horses, read books, swing, dance, sing, swim and spend time with her grandparents.  She also loves her 2 brothers (ages 8 and 5) very much.  She tries to be a good helper for me and a good role model for her brothers.  She is an incredible child and we love her very much.  With a lot of love, patience, money and research Kaylyn is becoming a fantastic young lady!  We have very high hopes for her future.