January 23rd is a very special day in our house. It is the day our angel, Kailee Morgan Welsh, was given to us. She weighed only five pounds five ounces, but would prove to be the strongest little girl ever. This is her story.
Kailee came into the world a very small, but very sweet little girl. Little did we know that two days after we
left the hospital our new journey would begin. Kailee stopped breathing at home. We rushed her to the hospital where they took her from my arms, carried her to the back, and gave her oxygen.
All the doctors believed, after several days in the hospital and many tests later, that my OBGYN must have misdiagnosed my due
date, Kailee is a preemie they told me. We left the hospital, tired, wore out emotionally as well as physically, but relieved that our little angel was going to be ok. 
Kailee came home on an apnea monitor and on caffeine. Much to our surprise, Kailee's problems would not end there. She continued to have breathing problems, and now, heart problems. This landed us in the hospital when she was four months old. During this stay, a gastrointestinal doctor was brought into the picture. After many tests, pH probe etc, reflux was Kailee's new diagnosis. This was all a puzzle to us, why did our precious Kailee have all these problems?She looked normal, and she acted normal. As we continued in her care, more medicine, more doctors, new tests, we finally started to ask the question why? Why was all this happening? Was there something more that we were missing. The answer would come in the form of a geneticist. October of 1995 was the most devastating month of my life. We finally had an answer to all of our questions. Our daughter had Cornelia de Lange Syndrome. Will she walk, talk, smile, know her mommy and daddy, laugh, live? No they told us, she would die very young and suffer very much. I don't think we stopped crying for days. Our dreams for our little girl were destroyed, our hearts torn in two, and our souls lost.
Kailee and her sister Kinsey
After several days, maybe weeks, we finally made the phone call that would change our life forever. Her name was Lynn, and she was very kind to a mother who was tearful and sad. When we were ready, she would put us in contact with other families who understood what CDLS means. In the meantime, Lynn sent us information, and tried to give us hope. The Cornelia de Lange Foundation would now be forever in my address book and forever a part of our lives.
Kailee would continue to have GE reflux, so she became a regular at our local hospital, pneumonia, dehydration, and "failure to thrive" as they call it, would put us in the ICU two more times her first year of life. At that time, it was imperative that we do a fundoplication and g-tube placement. This was the beginning of her new life.
My husband Ken and I decided after all of this that we needed a break and left Nevada to vacation at my parents house in Phoenix, AZ. We moved down to Phoenix two weeks later. The best move we have ever made.
Although Kailee continues to have reflux, and as endured so much, she continues to prove everyone wrong. Always exceeding her goals, always fighting the good fight, and winning. She has had three sets of PE tubes, but now she can hear, Hooray!!Kailee does use two signs, eat and more, and also is starting to vocalize a lot. She definitely knows her mommy and daddy, and her smile and laugh are very contagious. Kailee started walking after we returned from Minnesota, our first CDLS conference. Kailee attends preschool three days a week, and goes to OT, PT, and speech therapy each once a week as well. Although she does not talk, she says so much. What was a devastating diagnosis, has turned into a blessing. Kailee has taught us so much, and continues to remind us why we are here. To live, to love, and share in each other's lives the happiness and joy that our special kids have brought us. Kailee has two sisters, Kinsey 5 and Kaitlyn 21 months, who adore her just as she is. Lessons so many have yet to learn, and they are already beginning to understand.
Kinsey, Kaitlyn, and Kailee
I feel so blessed to have such a supportive and loving family. My husband has been a rock for me, always being by my side to laugh, or cry with. Without him, I would be completely lost. My children who constantly amaze me, and who I love more than my mother ever could have described to me. And now
I am so happy to have a foundation that is so helpful and so supportive. This includes the online support group. What a difference you all have made in my life, thank you.
Kim and Ken
My last thought to you all is this: treasure every day you have with your angels. Hold them, laugh as they destroy your clean kitchen, kiss them, and then kiss them some more. Every day we have with our kids is a gift. I think that is what Kailee has taught me most, to appreciate life, to appreciate our friends and family, and to love them all unconditionally.
Kailee is definitely our angel.
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