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.

Home from the Hospital!

Kayli spent 10 days in the hospital with Viral Pneumonia.  She had Rhino, Enterovirus (the common cold).  She was on the CPAP/vent for several days because her little heart was so tired and she needed a little help getting enough air to push open her lungs.  The PICU dr's explained that Kayli would need to fight the virus herself (there are no meds to help).  Putting her on the vent settings to breathe for her would only allow Kayli to stop fighting....she needed to fight off the virus.  By putting her on the vent with CPAP settings, she was able to fight/breathe on her own, but with a little umph/help to open her lungs.  Again, odds against her, KAYLI SURVIVED!!! The wonderful thing about Kayli being on the CPAP machine, is that it helped retrain her on how to breathe and swallow! lol She now is a mouth breather instead of a trach breather!  This is a progressive step towards capping her trach, her speaking, and eating again!!! Just a little reminder here...Things happen for a reason!  God has the plan, even if we don't understand why we are in the journey as we are! ;-) If Kayli wasn't admitted and put on the CPAP machine, we wouldn't have known she could learn the reflexes she has learned now!

Kayli came home to us with 2 doses of steroids left to take (she has asthma).  Her pediatrician thinks she wasn't on the steroids long enough, because merely a week later Kayli was taken back to the hospital for the same virus (although no longer in her lungs/pneumonia).  Basically, she was not entirely healed and the help she was given made her look better than she was.  She went back to the hospital to continue healing, but is back home with us and is doing GREAT!!! Her asthma is under control, and she is back to being alert and anxious to learn!  She turns her head towards us when we enter the room, she smiles with verbal prompting, and follows with her eye gaze during vision therapy!!! We are keeping her out of school for a month per dr's recommendations, so she is well enough and equipt enough to handle another virus spreading through classrooms.  In the meantime, we will continue to do the therapies at home.  I am excited for her teachers and thearpists to see the great strides she is making! 

Current home therapies include range of motion, exercise ball for ab exercises, switch toys for cause and effect, tactile (touch)  for sensory, and her Ipad for visual training (she is learning to move icons on the screen with her eyes!).  Kayli uses a hearing aid but does not have the needed FM system to sort out background noises.  She has eyeglasses now, that are custom made because her ears are lower and her eyelashes are so long! lol  Both are traits of Trisomy. We are putting her on the Passi Muir valve (speaking valve) more frequently so she continues to swallow, learn to vocalize, and exhale through her mouth/nose.  It is amazing to see how resilient and eager to learn, she is!

On a side note, while Kayli was in the hospital, I too, was admitted.  I had a mass and abcsess in my right breast.  I was admitted through the ER on that Sunday, and had surgery the following day.  I was in the hospital with Kayli for 6 days (in a seperate room).  The first couple of days, I was not allowed to see her until Infectious Disease cleared me.  It was very hard on her and myself because I was stayed with her at the hospital, told her I was going home to shower and that I would be back in a few hours.  When arriving back at the hospital, I stopped in the ER first, because my symptoms got worse.  They admitted me, and I was not allowed to see Kayli. It hurt, and I cried because I could not be at Kayli's bedside, supporting, advocating, and protecting her.  The staff was so kind, they put the phone to her ear so I could tell Kayli why I was not there with her.  Kayli's nurses would come to my room to give me updates on her care and recovery.  After 2 days, the cultures came back, and I was allowed to spend time with Kayli in her hospital room! <3  We healed together, and we are both at home now.  She is recouping faster than I am (she IS younger! lol). I have Multiple Sclerosis, and when my body is stressed (surgery and infection stresses the body) then I have flare ups.  I am struggling with my MS right now, while admiring the resiliency, adaptibility, and courage my daughter has!  Kayli is an inspiration, for sure!  I am grateful God has Blessed us with the lives he has given us! <3

Kayli is in the hospital with viral pneumonia

Kayli was sleeping in the wee hours of Thursday morning, when she suddenly had a fever, nasal secretions, was wheezing and sounded congested.  We tried giving her neb/breathing treatments but the wheeze was persistent.  Her pulminologist suggested taking her in to the ER to get chest X-rays, so we did.  Her chest X-rays did not show pneumonia, but the breathing treatments in the ER weren't working either.  Kayli was admitted to the hospital.  Kayli was in respiratory distress and retracting on Thursday, Friday, and Sat.  The fight in her was wearing thin, as she started tiring out.  Her oxygen levels (sats) declined, her heart rate was dropping, and she had to bagged many times.  The medical team did not want her on a vent because there is little a medical team can do for a virus and they needed Kayli to continue fighting.  A vent would breath for her,  and they needed Kayli to continue to fight so they decided to put her on a CPAP machine. A CPAP assists in breathing by pushing air pressure into her lungs, while Kayli is drawing the breaths and is exhaling on her own.  She also started getting continuous breathing treatments for 8 hours straight yesterday. Today is a better day for her!  She is still on the CPAP, but has more energy and is starting to make faces about being on the CPAP. Lol. She is getting breathing treatments every 2 hours, and is maintaining her oxygen levels in between now! Her chest is not retracting, and she is gaining strength as she breaths easier.

I was questioning our decision to take her to the Wisconsin Dells last weekend, but I
 was assured by the dr that she did not get the viral pneumonia from being in the lazy river, but it was more likely from school.  I was relieved to hear that, because Kayli had a blast (she loved the waves!!!) and we were able to share some more wonderful family memories together!!!

A parent is much like a candle, and the child like a flame.  God sends a child to be the flame that ignites the parents for a purpose! I am proud to support the vibrance of my flame, as she shines brightly with His purpose, and lights the way for me!  ~ Kelly Whistler

Kayli started preschool!

Kayli is now in preschool for her second year.  She goes to a special needs school with her private duty nurse. While in school, Kayli gets 6 therapies throughout the week, including vision, hearing, physical, occupational, developmental, and speech.  Kayli will be using her Passi Muir valve (speaking valve) , FM system ( microphone system that hooks up to her hearing aid), her new eyeglasses, a smart board, stander, lightbox, and other educational yet fun equipment to allow her to learn at her cognitive level! We are working with the school to get Kayli in the school pool for aquatic therapy, trach and all!!! Kayli loves the bath, ocean, and pool!  I imagine it's because the water takes gravity and weight off her bones and muscles.  Currently, Kayli is short a private duty nurse, so she is only able to tend school 3 out of the 5 days a week. We are orientating a new nurse to fulfill that position.  We hope the nurse and Our family is a great match! This first week of school has been all about the head, a part of our body.  Kayli has used her fingers to make a smiley face on a cookie, used a glue stick and pushed her hand down on magazine cutouts of heads to make a collage, listened to others sing songs about heads, and played games about heads while touching her own head.  It has been a great start to her new school year!

Kayli cognitively smiles with verbal prompting!

http://www.youtube.com/watch?v=vsAYNNv7HFc&feature=plcp.      Kayli has relearned how to use her facial muscles, and cognitively smiles at Mommy when verbally prompted!

Support Organization for Trisomy (SOFT) Conference

It was a rough start to the SOFT conference for our family (our 1993 van broke down twice and left us in dangerous situations).  Once at the conference, we all had a great time meeting, reuniting, and conversing with other adults and kiddos with rarer Trisomy diagnosis'.  While at the conference, Kayli swam in the hotel pool with other Trisomy Families, saw the monumental St. Louis Arch, strolled in the walk of Fame, got her face painted with hearts (her signature icon), had a charactature picture of herself as a princess drawn, Released balloons for her Trisomy Angel Friends, took many pictures with her Trisomy Families, and went to 2 workshops to learn more about Assistive Technologies and Chiropractic help for digestion. If you are in, or traveling through St. Louis Mo, be sure to look for the billboard that Kayli and some of her Trisomy friends are now proudly appearing on!!!

Kayli and family are getting ready to go to a Trisomy Conference!!! Our princess will go on the trip with a lot of "luggage". Some may say she is high maintenance, but we like to think her luggage means she is going somewhere we were told she never would!  Packing up all the luggage is a small price to pay for the world she opens up for us! Kayli's list of necessities: air compressor, concentrator, stationary suction machine, portable suction machine, suction catheters, HMEs, Fisher Paykel, pulse oximeter, portable oxygen, feeding pump, extensions, formula, feeding bags, emergency bag, diaper bag, wheelchair, ambu bag,  medications, and clothes....lots of beautiful clothes. Kayli's closet full of clothes mean I selfishly get to see that outfit that I admired on the store rack, on her.  While some children get spankings at her age, my soul fills with joy with every pat on her butt to comfort her because of her developmental delays.  I whisper sweet loving words of encouragement into her tiny heart shaped ears and she fills my soul with an energy like no other.  Kayli's Krusade and this trip leads us to new memories.  Kayli is bringing us across the state to see God's wonderful creations first hand.  Our family will sing travel songs in a confined space so Kayli's hearing impaired ears will be able to hear the joy in our voices.  Kayli will be bringing a lot of luggage, and along with her luggage, she brings memories. We will be introducing and reuniting Kayli with other families with Trisomy loved ones.  Some families will be inspired by Kayli's Krusade, others will inspire us.  We will all share in the joy of Loving a Child with Trisomy.  We will be one, in a world that almost wasn't ours.  So, I say, Bring on the Luggage Kayli!  You are taking us places we never would have gone! At 3 years old, you continue to show us a whole new world!

Kayli's pediatric spine orthopedic visit today. (shakes head)

Kayli's appt today: The Pediatric Spine Orthopedic at the Chidlren's Hospital in Chicago all but told us he is not interested in helping Kayli because of her T18 diagnosis.  That's ok though because the wacky dr does not sound intelligent enough to treat her anyways! Here are some unbelievable things that came out of his mouth! 1. Kypho-Scoliosis is NOT painful....unless you are old. 2. (Kayli's shoulder blade is out of place because of her spine deformities.)  She will never get range of motion in her shoulders, even if I helped fix her spine because she has T18. (huh?!). 3. Risser Casting is only for older people. (false) 4. There is another casting system that I don't know the name of...something french...  I don't do the casting, but I've sent everyone that wants that casting to Shriners.  (Next sentence was...) I've only had one person begging for the new casting system and I sent them to Shriners. 5. I'm a surgeon, but I won't do surgeries for little people like her. (he is an orthopedic spine surgeon at a CHILDREN's hospital!) I don't do casting.  I can brace her though.... (???? wth?!!)  6. When I asked what Kayli's spine curvatures were, he hadn't even looked at the Xrays taken today and had no interest in looking at them.  He said they don't measure kyphosis degrees because kyphosis doesn't cause body organs to move. (wrong, it is THE most dangerous spinal curvature!)  7. I don't do the growing rods surgery, and I don't suggest fixing her spine (surgically) because her lifespan won't be long and her spine is too small to ancher the growing rods to at her age. (yes, he actually said he KNOWS her lifespan!) (keep in mind, a surgeon in OH has 2 patients as I write this, who are Kayli's age and with T18 and had the growing rods surgery)  8. (I argued his comment about Kayli's lifespan and the pain she is in while she IS still here with us.)  To which he replied... You obviously don't believe the statistics about your daughter's diagnosis and you think she is better off than ALL the other children with Edward's Syndrome. (This is when Momma Bear came out!).  I asked him if he has researched or read resent research about Trisomy 18, to which he replied NO, none at all.  I started explaining the spectrum of T18 to him when he yelled over me that he didn't want to hear it and I don't need to tell him about T18.  After I calmed down, I asked him more questions and told him that since he admittedly does not know as much as I do about Trisomy, he needs to speak to me about Kayli's orthopedic condition and not mention Trisomy 18 again as an excuse for not treating her.  He agreed to brace her with a TLSO, and we both silently agreed not to make another appt for him to see Kayli again. He quickly left the room as I asked the Resident Dr to compare Kayli's past curvature degrees (on a disk I brought) with the degrees they found today.  The worst part is...there were student dr's in the room to which he TAUGHT this misinformation!  I am ashamed for the MD who had the honor of meeting Kayli today.  Ashamed of his poor intellect in such a high status role.  I lost respect for another physician today.  This one for his lack of intellect, and his lack of interest in continued learning.  On to the good part!  Kayli inspired the Xray tech and the student learning from the Xray tech! AND>>> the orthotist who fit Kayli for the TLSO was smitten by Kayli and is meeting with us tomorrow at a different location, to give her the TLSO instead of making Kayli wait a week (usual turn around time frame)!!! The boys picked out a purple/blue camouflage transfer (coloring) for her TLSO (back brace).  Kayli has another ortho appt tomorrow.  The ortho moved from Shriners (a place that refuses to treat Kayli because of her Trisomy diagnosis) and is Team Kayli, so it should be a good visit! :D  He is following up with Kayli's club feet corrections.  <3

Kayli's first school report card!

We are so proud of Kayli!  We got her Summer School report card today, and she has improved in many areas!  It's hard to believe that nearly 3 years ago, we were told she would never know who we are, much less have purposeful, functional movements and achievements!!! Kayli's Daddy says "if studies say we only use 10% of our brain, and if Kayli uses all 25% of hers....she could be smarter than us!"  LOL  Keep up the Great Work, Sweet Pea!!! <3 

Please keep in mind, these IEP objectives are for a 3 year old, who survived 32 minutes of anoxia (no oxygen) and is patiently working with 25% of a typical 3 year old brain size. Kayli has taken on the challenge of relearning reflexes that are she had, and that are typically innate at birth!

The following are some objectives (working tasks) for long term goals in her IEP:

1. Kayli will shift gaze between two lights/objects presented approximately 5-10 inches apart at eye level, above eye level, and below eye level, without sound/movement cueing.
KAYLI IS ABLE TO MEET THIS OBJECTIVE 1 OUT OF 4 ATTEMPTS!!

2. Kayli will bat at an object in front of her or above her with verbal prompting.
KAYLI IS ABLE TO MEET THIS OBJECTIVE 2 OUT OF 4 ATTEMPTS.  KAYLI IS ABLE TO DO THIS WHEN PRESENTED WITH OBJECTS IN THE LIGHTBOX.

3. Kayli will reach for an object at close distance with verbal prompting.
KAYLI IS ABLE TO MEET THIS OBJECTIVE 1 OUT OF 4 ATTEMPTS.  WHEN THE SPEAKER SAYS "PUSH PUSH" KAYLI WILL ACTIVATE THE BIG MAC SWITCH.

4.  Kayli will respond to a familiar voice by turning her head or eye gaze toward the voice.
KAYLI IS ABLE TO COMPLETE THIS OBJECTIVE 1 TIME IN 15 MINUTES.  SHE RESPONDS WITH AN EYE GAZE TOWARDS THE SPEAKER.

5.  Kayli will respond to a noise producing toy by turning her head or eye gaze toward the toy.
 KAYLI IS ABLE TO COMPLETE THIS OBJECTIVE 1 TIME IN 15 MINUTES.  SHE RESPONDS WITH AN EYE GAZE TOWARDS THE TOY.

6.  Given task set-up with gravity eliminated.  Kayli will apply pressure with her hand, arm, or leg to activate switch toy.
KAYLI IS ABLE TO PERFORM THIS OBJECTIVE WITH 20% ACCURACY.

7.  After appropriate positioning, and with hand-over-hand assistance as needed, Kayli will activate a familiar switch-activated toy, presented to her left, right, or in midline, at least three times in succession.  KAYLI IS ABLE TO PERFORM THIS TASK 1 OUT OF 5 ATTEMPTS.  KAYLI, WHEN GIVEN TIME, IS ABLE TO ACTIVATE A SWITCH.

New video! Kayli's play date with a hamster

Kayli has a new video!  She is playing with her brother's hamster.  Watch to see her interacting and smiling while playing with the hamster! http://www.youtube.com/watch?v=1fARtlvpSZY&feature=plcp

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

Rick Santorum's Daughter, Bella

Kayli and Bella share the same syndrome, along with many other survivors!  There is a wide spectrum of children surviving with Trisomy 13 and Trisomy 18!  Unfortunately, about 90% do not get a chance to thrive because the Moms are not given complete information during pregnancy and are pressured into TERMINATING their pregnancy or the babies are DISCRIMINATED against and DENIED life saving surgeries simply because the spectrum of the diagnosis is not recognized world wide!  There is a community of Surviving children (some in their 30's!) with Trisomy!  The oldest living Woman with Trisomy 18 was 47 years old, and had 2 college degrees!!! You are helping our children, simply by being aware of this Syndrome!  YOU can make a difference!  If you hear of anybody who has a pregnancy or loved one affected with Trisomy, please have them contact myself @ kwhistler@live.com, www.trisomyhelp.org, or Kayli's blog (here) at www.trisomy18.blogspot.com.  To see videos of children surviving with a Trisomy Diagnosis throughout the USA and Internationally, please visit the advocacy site at www.trisomyhelp.org !  Thank YOU for making the difference in the LIFE of a child! <3

I. am. exhausted.... I had people (dr's therapists, nurses, aids, etc) lining up outside Kayli's room at the hospital to speak with me (I'd rather this, than nobody helping Kayli!), got in a brief visit from one of Kayli's home care nurses, went home to be with my boys, went to do an errand with the family, got caught up in a call from MAW while in a store, and now am trying to find the energy to feed the boys, shower, and get back to be with Kayli.  There is so much to do, and my days are flying by too quickly! Before I can go back, I have to put together a letter to move forward on the installation of the lift.  And, I have to order Kayli's supplies... Days like this, I wish I could "work" in my sleep! lol The surgeon consulted on Kayli twice today (I guess the first time, I fell asleep and was out cold and he couldn't even wake me up! The hospitalist said the same thing!).  It sounds like all involved agree there is something going on in Kayli's abdomen.  The surgeon is going over her past abdominal xrays to look for a pattern, then is entertaining the idea of an enima with dye to see where the system is going awry.  His first concern is a tear or blockage in her small intestine, then blockage in her large intestine, and also a concern that her bowels (colon?) is/are not working...which could mean a surgery to remove that portion of bowel?  The urologist suggested that if the colon is not working anymore and is built up with fecal matter or swollen with infection, it could be pushing up against the bladder and compromising the function of the bladder (releasing urine). I can't Thank you enough for all the prayers and well wishes!!! God Bless you! I hope to hear good news when I get back to the hospital!

Back in the Hospital

Kayli was admitted back into the hospital on Jan. 12th for Bladder Retention (she isn't voiding).  She is having further issues now, including abdominal pain, fevers, ear infections, and poor stool output.  She has been up all night with pain, and is challenging all the doctors to find the source of the issues while patiently waiting for us to figure it all out.  Please keep her in your prayers.  She needs comfort, peace, and the medical staff needs guidance.  Thank you!  God Bless!

Kayli is home!

Kayli's hospital stay was because she had an ear infection that wasn't treated properly by her ENT.  The bacteria grew to be a sinus infection and ear infection that needed IV antibiotics.  The same bacteria is known to cause Bronchitis and Pneumonia, but Kayli was fortunate to not get those! :D I believe she also had a tummy infection (she had blood clots in her stomach, and was flinching when her tummy was touched.  She also refused to lay down the first 3 days of her hospital stay).  She is doing VERY well now, and is smiling at her Daddy, Brothers, Nurses, and Therapists!  She is truly a happy kiddo!  We are happy to have her home with us!

I hope she stays well enough to travel to a FUNraiser held for Noah's Never Ending Rainbow this month! It is a worthy non-profit organization, please let me know if you would like to join us for the FUN!

Kayli was accepted in the Make a Wish program, and we are planning a trip to Disney where she will get together with many of her Trisomy Families, and some Friends of our Family!

You can learn more about Noah's Never Ending Rainbow on fb, http://www.facebook.com/pages/Noahs-Never-Ending-Rainbow/143415527765 or on the web @ http://noahsneverendingrainbow.org/