Kaylor

Kaylor’s Story

by Jon and Franny

Kaylor was born May 25th, 2007. Despite a few concerns during my pregnancy, she entered this world at 39 weeks gestation with a full head of black hair and weighed 8#’s 5oz. When we were in the hospital there were some issues that started to arise with her. One of those issues was breastfeeding. She had a really hard time latching and staying on, but the nurses reassured me that since this was new to her, it may take a while before she gets the hang of it. Another issue was her breathing. The second day of Kaylor’s stay, she stopped breathing and turned a gray dusky color. Later that night they performed a sleep study on her and found that she hadn’t stopped breathing at all, they had diagnosed her with newborn apnea. It is typical for a newborn to pause in between breaths for up to 19 seconds, anything longer than that would be concerning. Kaylor’s pauses were anywhere between 23-25 seconds so just to be safe they sent us home with an apnea monitor to use until she was 6 months old.

As soon as we got home I started doing research on newborn apnea and read that it usually occurs in premature babies which baffled me because Kaylor was full term.

The next few months were good. Kaylor was smiling a little and making some eye contact with me, but the feeding didn’t get better. Unfortunately I had to switch to bottles and use special formula called Alimentum. If you have ever had to use this formula it is very expensive. It is made for babies with extra sensitive tummies or food allergies and only comes in 16oz cans that last approximately four days, so it can get pretty costly.

When she turned four months old, I noticed that Kaylor’s eyes were watering a lot. The pediatrician told me that it may have something to do with her tear ducts, and she explained that sometimes babies’ tear ducts don’t always work the way they should when they are newborns, but that over time it would get better. It didn’t get better and when Kaylor was five months old I looked really close into both of her eyes and couldn’t believe what I saw. Both of her bottom eyelids were inverted and her eyelashes were rubbing on her eyeballs. That is when we were referred to the ophthalmologist and he diagnosed her with epiblepheron and entropion. We were told she would need surgery right away to avoid damage to her cornea. If left untreated it could affect her vision or possibly cause blindness. The surgery was minor and she came out fine and to this day you can’t even tell she had eye surgery. She has never had another problem with her eyes again.

The report from the eye diagnosis indicated Kaylor’s condition had genetic factors. Our pediatrician felt Kaylor needed to be seen by a geneticist. We were referred to the Monroe Meyer Clinic in Omaha Nebraska which is part of the University Of Nebraska Medical Center and that is where Kaylor was seen by one of the top geneticists.

Upon a physical overview of Kaylor they diagnosed her with hypotonia, which is low muscle tone. After a long discussion of our hospital stay explaining her feeding and breathing issues they came to the conclusion that due to the low tone, poor sucking reflexes would cause feedings to be difficult. They couldn’t really tell us much regarding her breathing issues since she was a full term baby and since hypotonia affects the entire body breathing might have played a factor in that as well. After the three hour long appointment, they suggested we go ahead with a full chromosome work up and sent us next door to have Kaylor’s blood drawn.

On October 18, 2007 we got the phone call that would change our lives forever. They told us Kaylor had isodicentric chromosome 15, a very rare chromosome abnormality, and not much was known about it.

They told us that Kaylor would probably never walk or talk on her own, and we should go home and love her and enjoy her as much as we can. They said that parents who have children like Kaylor usually end up putting them in institutions. Well, if a parent wants to institutionalize their special needs child, that is their choice, but I knew one thing for sure, I WAS NOT! Later that month, our school district came out to do an assessment on Kaylor and told us that she would qualify for occupational, physical and speech therapy services. Starting the beginning of November 2007 Kaylor started to receive those therapies. They would come once a month and for the next two years they became a permanent fixture in our lives. They did wonderful with her. They taught her how to sit up alone, roll over, crawl and even walk on her own! All of those milestones were delayed by many months and even years, but to us, we were so thrilled and overjoyed with emotion when she did reach those abilities!

In August of 2010 Kaylor started the Excite Program at Belmont Elementary and has almost completed two years. She will be transitioning into kindergarten in the fall of 2012. She has come such a long way and is the joy of our lives! She is a very happy little girl who loves to sing songs, dance, clap her hands, play with baby dolls, splash in the bathtub and fight with her younger brother. She loves to give mom and dad kisses and loves attention and hugs! Despite what the geneticist told us about Kaylor’s life, she can talk, she can walk and she is living her life to the fullest in our home where she belongs!