Kayli's Krusade to Kut the worthless label

Kayli's Krusade to Kut the worthless label

Kayli, has a diagnosis that denied us the opportunity to save her umbilical cord blood at birth. We were told that if she died (she had a less than 10% chance of surviving, with her Trisomy 18 diagnosis) we would not be allowed to donate any of her organs because every cell of her body was affected with Trisomy 18. 

We were told she i

s "incompatible with life", not worthy of life, nor of giving life to anyone else. We weren't even allowed to save her umbilical cord blood to help her own, biological brother, who was battling brain stem cancer at the time.

Kayli is now 3 years old, and has the most perfect hair to donate to another child in need! We want to shout it to the world! Our daughter IS worthy of life, and she is continuing to share her loving, giving, qualitative life with others! If we had lost hope, we would have dreaded her impending demise, instead of celebrating and sharing the joy of her life with others! If we believed Kayli's life was worthless (as it was labeled), she would not have her hair to donate to another warrior child! Our family wants to share Hope with other families facing a Trisomy diagnosis.

Kayli Kut the label today!!!! Not only is she worthy of life as our daughter, sister, friend, and person...but now she is also a HERO!!!! Kayli donated her LONG hair to Wigs for Kids today, to help another warrior child in need!!! 

Kayli is an inspiration for many!  I hope others see her as the hero and warrior she is, not as a Trisomy 18 diagnosis and unworthy of life!  No matter the challenges in our own life, we are ALL WORTHY to someone!  

 We would like to shout out a VIVACIOUS Thank You, to Wigs for Kids, who was present for Kayli's Krusade.  Leslie, the Associate Executive Director, flew in from OH to 

personally except Kayli's 4 ponytails!!! Kayli and family were even able to skype with the founder of Wigs for Kids, Jeffrey!!! We would also like to shout out a loving Thank You, to everyone at Blush Salon and Spa in Crystal Lake!! They were all such amazing hosts!  Blush Salon and Spa is now generously offering a free hair cut if you donate your hair in honor of Kayli's Krusade, to Wigs for Kids!!!!  Thank You, Christina!!!! Gina did a wonderful job of comforting me while cutting Kayli's hair (yep, this Momma cried during Kayli's first hair cut!). lol  Kayli was peaceful and appeared to enjoy the weight lifted off her shoulders as her hair was cut! :D We were able to take a lock of Kayli's hair home, to add her first hair cut to her many memorable moments! <3 

Kayli's friend with Trisomy 18, Carlie (6) was also in attendance!  It is always wonderful to see Carlie and her Mom, Christy!  When in a world where Trisomy is so gloom, at times you can feel alone, lost, hopeless, and frustrated.  Having other families around you who understand the Trisomy journey, no matter if their loved one is alive or has passed on, can bring a wealth of comfort and bring peace and acceptance.  If you, or someone you know is facing or has faced a Trisomy diagnosis (2, 9, 13, 18, 21, etc) please let them know they are NOT alone!  You can suggest they contact me, kelly@trisomyfamilies.com, join Trisomy Families on facebook @ www.facebook.com/groups/trisomyfamilies   or visit our website, www.trisomyfamilies.org  The website is currently under construction, but should be up shortly! 

Please consider donating for Kayli's Krusade!!! While joining Kayli's Krusade, you will be spreading Trisomy Awareness, helping give a warrior child a wig, and supporting an amazing Kause! ;-)

To donate at your Local Wigs for Kids affiliate in honor of Kayli's Krusade, please go to http://www.wigsforkids.org/index.php?option=com_locator&view=directory&layout=search&Itemid=195
If you do not have an affiliate salon near you, please follow the online directions to send the hair donation to Wigs for Kids @ www.wigsforkids.org 

What an amazing day, for an amazing girl! <3  

Good News, and Surgery is a go for Monday!!!

     While sitting in the Pediatrician's office for Kayli's flu shot and pre-op appt (for her elective surgery this Monday), Kayli's Pediatric Cardiologist called with news of Kayli's newfound heart condition, pulmonary stenosis. 

     The Cardiologist has gotten report back from a Chicago hospital board meeting focusing on Kayli's Pulmonary Stenosis.  The consensus is that Kayli's Pulmonary Stenosis is NOT causing Pulmonary Hypertension!!!!! This is wonderful news, as it means that although her heart is abnormal, it is functioning as it always has!  She is adapting to the narrowing of her main artery!  Kayli's heart needs to be watched closely for any life threatening changes, but our daughter is well enough to be cleared for surgery this Monday!!! Kayli will be getting a bronchoscopy (a scope that looks at her trachea) and a tendon/heel clip (to release her tendons so she can have a 90 degree angle in her ankle to stand). Kayli will get the elective surgery (non-life saving) on Monday, and will then be in a cast for 3 weeks.  While in surgery, she will be fit for her AFOs (braces) so they will be ready by the time the casts are off.  Once in her braces, she will be able to stand again!!!!

    In this Thanksgiving season, we are grateful for Kayli's supportive medical team!!! While we are here, facing another heart condition, we are humbly reflective of the lack of support Kayli had 3 years ago, when she had open heart surgery.  We are confident that Kayli has the respect and chance of care that she has always deserved!!!  Thank you Dr. Michael Paul, and Dr. Thomas Dovidio for your support, care, and love for Kayli!!!! <3

Kayli's Heart

Kayli's heart

Kayli's cardiologist called back today with the result of her lung perfusion test, taken the end of last week. 

In general, our lungs receive blood from the Pulmonary Arteries.  The blood is typically distributed unevenly, with the left lung getting apprx. 40% and the right lung getting 60% of the blood because the right pulmonary artery is larger.  In Kayli's case, the opposite is now true.  She is getting 40% of blood flowing to the right lung, and 60% to the left.  The Cardiologist said the right lung is currently working with apprx. 1/2 the blood flow it should be.  The good news, is that it is not an URGENT issue, meaning she can get her flu shot and go back to school...and...she can have her EGD and heel snip surgeries on the Monday after Thanksgiving Day. 

The next step:  Kayli's cardiologist is presenting Kayli's case to the Medical Board at Children's Memorial Hospital.  The board will discuss the options of a Heart Cath, vs. Open heart surgery. One of the only 2 doctors who has experience and skills to do a Heart Catheterization, is the very same dr who told us his hospital would never give heart surgery to a child with Trisomy 18.  Since then, Kayli DID have her open heart surgery there (against his wishes, and without his involvement).  I was scared for Kayli at first, but then realized, God may be forcing his hand to use his God given skills to work on (and open the door for) children who have Trisomy 18!! What a joyous day it will be when Kayli opens the heart of the discriminating dr!!

Family update: I will be having EGD and Colonoscomy surgeries tomorrow.  I will likely be diagnosed with the same incurable diagnosis as my 12 year old son, Jacob.  He has EOE.  And then I will be checked for any additional pre-cancerous polyps in my colon.  As I mentioned, Kayli will have surgery on the Monday after Thanksgiving, which will be around the same time we will hear the optimal route to fix her Pulmonary Stenosis/Hypertension.  The following Wednesday (of the same week), Niko (Kayli's 6 year old brother) will be put under anesthesia for his brain MRI to check for growth of his inoperable brain tumor. I will keep you informed of the surgical date for Kayli's heart surgery. 

Please say continued prayers for our family, and Please allow us to return the favor by posting YOUR family's prayer request here as well!

Thank you and God Bless!!
Kelly

Trisomy Tidbits, Inspirations of Trisomy

Every week, I will post a Trisomy Tidbit, where I hope to share the awareness of God's fearfully and wonderfully made creations around us every day...and inspire you to see people with a Trisomy diagnosis in a similarly amazing way! You may share these Trisomy Tidbits with others, I just ask that you copy them as they are (please do not make changes), and source it back to either Kayli's blog, or www.trisomyfamilies.org  Thank you, and Enjoy! <3

(Ladybug) Trisomy Tidbit of the Week: Our children are much like ladybugs.  Ladybugs are found in all climates and come to us in all seasons of our lives.  Their life cycle is apprx 4 weeks, which ties the ladybug to the energies of renewal and regeneration.  The shorter life cycle teaches us how to release worries and enjoy our lives to the fullest in each moment.  We do not love the ladybug any less because of the shorter life cycle, but we cherish the "let go and let God" peace about them.  A ladybug, with it's bold and distinguishing features, brings joy to us, as much as it has a protecting nature, and eats parasites in our gardens. It is amazing that our children, as well as ladybugs, are harmless, delicate, and fearless...regardless of their size.  Ladybugs are messengers of promise as they reconnect us with joy of living and loving life as it is meant to be.  When a ladybug appears, it is telling us to get out of our own way, and allow the wonderful Spirit to enter our lives.  Thank you for opening your wings, lil ones...and for helping us see what a "short life cycle" can hold. ~ Kelly Whistler

(Pearl) Trisomy Tidbit of the Week: A life affected with Trisomy is much like finding a pearl. A pearl is made spontaneously by nature, without human intervention. An oyster is protecting the mollusk from an intruder or irritant, by creating a pearl sac to seal off from damage or harm. God has chosen us to be the oyster for our pearls. Our children, no matter the the threats or damage brought until them, are made into perfection by the harm and damages they encounter. The pain and injuries caused by the irritant is overlooked and adapted into perfect, beautiful, glorious work to behold as rare and Devine. We have much to learn from the pearls of our life! ~Kelly Whistler

(Diamond) Trisomy Tidbit of the Week: The day babies with Trisomy are born, they truly are Diamonds, in the rough. Diamonds are found deep beneath the earth's soil, covered with earth's nature elements. Before diamonds are at their best state, they must be dug from their lowest point in their life, and polished, or treated (if you will) in order to shine as the jewel they are! Once in our loving arms, treated in such caring ways... babies with a Trisomy syndrome become the diamonds that will forever be; our best friend...our diamond. ♥ Trisomy Families are Forever proud to show off our Diamonds! ♥ ~Kelly Whistler

(Bumblebee) Trisomy Tidbit of the Week: Loved ones with Trisomy are as amazingly inspirational as Bumblebees are! Years ago the National (US) Aeronautics and Space Administration tried to explain the flight of a Bumblebee. You see, Bumblebees have such large bodies, and such small wingspans, that the scientist thought there must be an aerodynamic secret as to why Bumblebees are able to fly. Scientists wanted to learn the "secret" to how the Bumblebees fly, in order to use the "secret" to enhance their space programs. So the scientists researched, and studied the Bumblebee from every aspect. They hypothesized, scrutinized, examined, dissected, measured, timed, filmed, observed, compared, quantified, thought about and debated the bumblebee. After weeks of study they came to one conclusion – bumblebees are not capable of flight.... They came up with no answers, but yet the Bumblebee takes flight in front of their very eyes, because the Bumblebee does not know it is not suppose to fly. The Bumblebee does not set limits on itself by following a scientific manuel, and chooses to fly from flower to flower, collecting sweet nectar from every place it lands in it's life, enjoying God's creations as they are. With the Bumblebee's unexplained flight, it is able to pollinate the flowers in it's path/on it's journey. We can (and have) learned so much about Peace and loving our "Bumblebees" just as they are, for the sweet nectar (Love) they gather, among the flowers (family and friends) of our life, and for the opportunity of pollination (promoting growth) that some flowers may otherwise never see in their lifetime. Loved ones with Trisomy, and Bumblebees are to be appreciated as they are, not feared, nor killed, or swatted away....because if they were; the love would not be gathered, and the flowers would not bloom. ~ Kelly Whistler

Kayli's Heart/Chest CT scan results are in....

Last Friday, after Kayli's annual heart check up, the Cardiologist saw what appeared to be a glimpse of Pulmonary Stenosis, or a narrowing of the Pulmonary Artery.  The pulmonary artery is a major artery that comes from the heart and branches out to each lung, supplying the lungs with blood. We have anxiously been waiting for the results.

Today, I got "the call" from Kayli's cardiologist.  Kayli does have Pulmonary Stenosis/Pulmonary Hypertension now.  Kayli's pulmonary artery that leads to her right lung is significantly narrowed or "tight".  There are many ways to have or develop Pulmonary Stenosis.  The Cardiologist thinks that in Kayli's case, her arteries are growing, but a "special" little section is not developing along with the rest of her arteries.  The objective now, is to figure out the cause of the stenosis, test for the severity of the stenosis, then put together a plan for treating the stenosis.  Our first step in place, is to get a lung scan/profussion test, to measure the blood flow into her lungs to see if they are equal or not.  The test will also measure the amount of pressure in her heart, and how much air her lungs are getting, which will tell us how much the stenosis/hypertension is affecting her heart function and lung function.  Her testing is scheduled for Tues. If the testing is not favorable, she will need a heart catheterization, as the next step.  If the Catheterization (diagnostic, balloon, stent) is not favorable, we will be discussing another open heart surgery.

The hardest part about the situation, is that there are very few Specialists who are skilled to do a Pediatric Heart Catheterization in the Chicagoland area, and one of the few skilled dr's, is the very one that outright lied about a hospital's denial for Kayli's heart surgery, and (aggressively, verbally) refused to EVER work with Kayli, simply because she has Trisomy 18.  On one hand, I am irritated that God would force me to face such a close minded specialist, given such an amazing gift from God, even when the specialist (in my eyes) does not deserve the gift.  And on the other hand, I see God tapping me on the shoulder and saying "All my children are worthy of My love, and he is no more, nor less, deserving of the enlightening experiences your family has received with Kayli.  You must love thy neighbor unconditionally, as I do".   I need to trust that God's Will prevails, and there is a reason for EVERYTHING!!! <3  A familiar quote comes to mind.... "God only gives you what you can handle, but I think he trusts me too much!" lol

Please keep Kayli in your thoughts and prayers, as we remain steadfast in our faith in the Lord.  

Thank you,
Kelly, aka, Kayli's Mommy <3

A Blessed Life!

Any time I am out and about with Kayli, she opens hearts and frees spirits around her. The conversation usually starts with "what is wrong with her?" or "poor baby" and "how can you be so joyful and happy when you talk about everything that has happened to her and your boys?"  My answer is simple.... "I am Blessed".   To help others understand just how Blessed I am with the life He has given me, I have written some comparisons of my Children with some other of God's creations.   

If you open your heart, our spirit, and your mind, I'm sure you will see just how Blessed we all can be! 

Ladybugs

Our children are much like ladybugs.  Ladybugs are found in all climates and come to us in all seasons of our lives.  Their life cycle is apprx 4 weeks, which ties the ladybug to the energies of renewal and regeneration.  The shorter life cycle teaches us how to release worries and enjoy our lives to the fullest in each moment.  We do not love the ladybug any less because of the shorter life cycle, but we cherish the "let go and let God" peace about them.  A ladybug, with it's bold and distinguishing features, brings joy to us, as much as it has a protecting nature, and eats parasites in our gardens. It is amazing that our children, as well as ladybugs, are harmless, delicate, and fearless...regardless of their size.  Ladybugs are messengers of promise as they reconnect us with joy of living and loving life as it is meant to be.  When a ladybug appears, it is telling us to get out of our own way, and allow the wonderful Spirit to enter our lives.  Thank you for opening your wings, lil ones...and for helping us see what a "short life cycle" can hold. 

A Pearl

A life affected with Trisomy is much like finding a pearl. A pearl is made spontaneously by nature,  without human intervention. An oyster is protecting the mollusk from an intruder or irritant, by creating a pearl sac to seal off from damage or harm. God has chosen us to be the oyster for our pearls. Our children, no matter the the threats or damage brought until them, are made into perfection by the harm and damages they encounter. The pain and injuries caused by the irritant is overlooked and adapted into perfect, beautiful, glorious work to behold as rare and Devine. We have much to learn from the pearls of our life!

Diamonds 

The day babies with Trisomy are born, they truly are Diamonds, in the rough. Diamonds are found deep beneath the earth's soil, covered with earth's nature elements. Before diamonds are at their best state, they must be dug from their lowest point in their life, and polished, or treated (if you will) in order to shine as the jewel they are! Once in our loving arms, treated in such caring ways... babies with a Trisomy syndrome become the diamonds that will forever be; our best friend...our diamond. ♥ Trisomy Families are Forever proud to show off our Diamonds! ♥

Kayli's yearly Cardiac appointment

Kayli has been doing very well since coming home from the hospital. :-).   She had a chest CAT scan (CT scan) recently because her Cardiologist was not able to see her Pulmonary Artery well enough at her yearly Cardiac follow up appt.  Her specialist thinks he may have seen some narrowing (stenosis) of her artery, so he requested Kayli get the CT scan to get a better look at it.  We hope to get the results back tomorrow.