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Kaylee Archives - wolfhirschhorn.org
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On January 16th, 2013, Kailyn Elizabeth Hunter (aka Kaylee) turned 3 years old. To say that the journey thus far has been easy would be a lie, but I can happily report that the past year led to some wonderful developments for my jellybean. The first HUGE accomplishment for Kaylee was that she finally mastered […]

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Three Cheers for Kaylee!

November 4, 2012 by

This Halloween, Kaylee decided that she wanted to dress up as her favorite teddy bear. Of course, the teddy bear once belonged to her sister, Amanda, as did the costume…so perhaps, it would be more accurate to say that Kaylee wanted to be like her big sister– Amanda! The resemblance is quite stunning, if you […]

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Kaylee is 2!

February 12, 2012 by

On January 16th, Kailyn (aka: Kaylee) turned 2 years old. I will confess that it was a bittersweet day for me. While on the one hand, I could tell that she had grown significantly since last year~ developmentally, there was this feeling that she was still pretty far behind…even by Wolf Hirschhorn Syndrome standards.

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I always wanted a little girl…even from the time that I was a little girl. I was as “princess” as they came~ I role-played all of the damsels in distress in my make-believe world (with a little help from some Disney vinyl records that had all the songs). When my oldest daughter was born, I […]

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Well, I am going to begin by saying that if I could, I would wipe the entire month of May off of the 2011 calendar. Kaylee was in a touch-and-go situation for pieces of it; she endured not one but two g-tube surgeries, countless sticks with needles, and spent as much time in a hospital […]

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Happy Easter!

April 24, 2011 by

This is Kaylee’s 2nd Easter, and I think she looks just like a little princess! Although you cannot see them in this picture, she is wearing the same socks and shoes that she wore LAST Easter…this time, however, her toes actually fill the front of her booties. I posted this year’s picture next to last […]

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It is so hard to believe that a year has gone by since Kaylee was first diagnosed with WHS. I had not prepared for there to be anything “wrong” with my daughter. I expected her to be small…but not quite as small as she was when she was born. Still, she was my beautiful baby […]

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Kaylee turns 1!

January 16, 2011 by

It is hard to believe that one year flew by so quickly. This year has been quite the journey. Let me tell you about all that you have accomplished:

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Kaylee:6 Months Later…

August 9, 2010 by

When my husband and I first learned of Kaylee’s diagnosis, I thought that the doctors had given us a death sentence. Six months later,  I cannot believe how far she has come– or how much I have been inspired– by my little angel. Although she is still small for her age, she is slowly gaining […]

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Wolf-Hirschhorn parents, family members, doctors and therapists are rising up and I LIKE IT.  The crowd is getting motivated to produce change and that makes my little heart go “pitter-patter” with excitement.  We are no longer willing to let outdated scientific studies with gloomy photographs of emotionless kids in corners, poor prognosis and all-encompassing phrases like […]

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It’s all good…

April 20, 2010 by

Kaylee hit 3 months this past week, and she is doing exceptionally well. The Physical Therapist came today and told me that she was hitting all of the milestones that were expected of her at this age– she is holding up her head when on her stomach; tracking an object smoothly from side to side, […]

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A New Challenge

March 25, 2010 by

A father’s discovery of the joy of his daughter

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Meet Kaylee

March 11, 2010 by

My name is Laurie, and my daughter Kaylee was born on January 16th, 2010. Despite having an amnio at 18 weeks and weekly monitoring with sonograms and dopplers, we did not know of her diagnosis until after she was born. The first few months were very difficult for my husband and I as we came […]

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