Kayli's last day of the school year was today.  We do not want her to lose pace in the strides she has been making, so we amped up her Rehab therapies while she is on school break.  Kayli had a consistent day of pushing the  communication device (switch) yesterday while in group (circle) with her friends! While in group, she is asked if she wants a turn in circle time, and if she hits the switch it says "Yes, I do!" as well as some other choice phrases.  Kayli has had days where she lays in a light box with toys dangling and she reaches up and hits the toys or stares at the lights surrounding her.  She is known as the Fashionista of the school because she is always dressed to the 9's.  Each day, the staff eagerly awaited to see our daughter (often called "doll" at school) arrive at school so they can admire her outfit and matching accessories! lol  Kayli will have 3 weeks off until she starts summer school (which is not as vigilant as the regular school year).  Kayli has recently started swallowing consistently and we think it is because using the Passy Muir valve has taught her to manage her own secretions! During the summer months, we hope to maintain her abilities and guide her to learning more!  Wouldn't that be fun if she went back to school with more vocalization?!!! It is amazing that Kayli understands us and is making such great strides in her communication skills!   Thank you for supporting our precious daughter with your love, thoughts, and prayers!!!

Kayli goes to school now!

Kayli started school (preschool) on Monday, May 7th!  Once in the room with her classmates, Kayli looked around to her friends, and smiled.  She has a one on one private nurse and goes to school 2.5 hours, 5 days a week.  In her first 4 days, Kayli has finger painted, joined in group time, and tried out communicating with her vision on a smart board!  Instead of using her vision to communicate, she showed off her ability to use her hand thrusts to say she wanted "more" of the smart board! Kayli has been moving her arms to reach things, and to play with things (her latest is playing with a pop bottle that was placed next to her!).  She is learning to move her arms and legs in order to manipulate her surroundings.  Before we know it, she will be able to turn over again! We look forward to the many things Kayli will experience and learn in her new environment!

Kayli and her Trisomy Friends were mentioned on the Disney Blog!!

An excerpt from the blog:


When we arrived at GKTW, we learned of a special guest for the evening, Kayli – a Wish child with the genetic condition Trisomy.  Kayli had always dreamed of BEING in a parade, and sharing the experience with others in the Trisomy community to raise awareness for the condition.  Kayli’s wish came true when GKTW made her the star of the Winter Wonderland Celebration, and she was joined by 13 other families who also had a child diagnosed with Trisomy.  These families and special children traveled from all over the country to celebrate with Kayli.  It was now our job to make sure this parade was a success.

We marched up the Avenue, danced, and frolicked in the plaza as if we were festooned with jingle bells.  We posed in our costumes for photos with families and children we had worked (and played) with over the course of the week.  Then it was time to say good-bye.  By all accounts our week in the Village was a success, and Kayli’s wish had come true.  Congratulations to GKTW for the work they do in making wishes come true for over 115,000 children with life-threatening illnesses, and to the special volunteer “Angels” who open their hearts to serve in the Village.  GKTW now joins only a handful of organizations in the world who have reached 2 million volunteer hours in a single location.

For the full story, please visit  http://www.disunplugged.com/2012/04/17/give-kids-the-world-celebrates-milestone-in-volunteering/

3 years ago today...The preparations for a birth and a funeral were made.  The OR was waiting and we didn't know how long you would be with us.  The pastor met us in the Special Nursery of the Level 2 hospital...the only place agreeing to deliver you with intentions to treat your needs.  Daddy and I didn't take joy in your birth at first because we were scared.  You weren't breathing.  The nurse brought you to my face to say hello.  I didn't realize you weren't breathing, until Daddy gently told me they needed to take you away to help you.  I gasped and yelled please go...give her  oxygen!  It was a fight you had heard while you were in the womb, but we had come to an agreement with the generous neonatologist whom we convinced to believe in you.  The nurses rushed you off and Daddy followed close behind.  You took that first breath and cried.  A precious sound that some with your condition do not make.  We laughed with joy.  We got to hear the meow of your voice!  God is good! Next came the wonder of your physical characteristics.  Would you really look like the monster they talked you up to be?  One swift look of your long eyelashes, Daddy's nose, and Mommy's lips, and we knew there was no way you could live up to the ugly impression you were suppose to be.  We craddled you and showered love upon you. We watched your chest rise and fall in awe and horror, not knowing if it would continue the pattern.  As I sang to you, I was told your ears were too low to functionally hear me.  Yet you gripped my finger as if to say "sing me another song, Momma!"  The pastor baptized you in the special nursery as if to reiterate, we already spiritually committed your soul to God.  Little did we know just how close to God you are.  In the days that followed, we treasured every breathe you took.  I pumped God's milk to nourish you and give you every bit of life I could.  It was the least I could do!  You continued to grow stronger and even showed your temper if I left your side.  Mommy and Daddy continued to fight for your medical rights, as you waited patiently, and forgave those who wronged you.  Through you, I have learned forgiveness, patience, spirituality, unconditionally love, pure joy, Peace, Belief, Hope, Grace, Trust in the Lord, and well...you are every thing I aspire to be.  Thank you God, for the 3 years, 10 months with Kayli.  Sweet Pea, you are my inspiration.  You and your 3 brothers make me proud to be every bit of the Mother you have trained me and allowed me to be! I love you Daughter!  Happy 3rd Birthday!!! <3 

Parade during the Trisomy Celebrations!

Here is the link to the video of the Parade at Give Kids the World! :D https://www.youtube.com/watch?v=o-RSyGFvHOw&context=C47a245cADvjVQa1PpcFM9sMWEq2nfYF6NN_3t1ktbdBV6PTEje4E=

Make a Wish Trip and Trisomy Parade

Kayli had a Make a Wish in FL this March!  She had many firsts, including first horse ride, first time on an amusement park ride, first RV ride across the country, first time in the ocean, first time in a parade, and first time at the World's Largest Aquarium!  She went to Universal Studios, Magic Kingdom (Disney World), Sea World, Jekyll Island in GA, and many other fun places!  Her favorite parts of the trip was watching the fish at the Georgia Aquarium, sitting in the ocean on Jekyll Island, and meeting her Trisomy Friends and being in a parade with them at Give Kids the World!  This is the video of the parade.  Other pictures to come! http://www.youtube.com/watch?v=o-RSyGFvHOw&feature=youtu.be

March is Trisomy Awareness Month!!! You can support awareness by posting this on your fb status and tell everyone you love someone who has Trisomy!!! Thank you!

‎"Parents are similar to a candle. God sends a child with Trisomy to be the flame that ignites the parent for a purpose! I am proud to support the vibrance of my flame, as my daughter shines with His purpose and lights the way for me!" ~Kelly Whistler