Kayli, beyond her trisomy diagnosis

All about Kayli, looking beyond her trisomy diagnosis

Nickname~ Sweet Pea, Princess, Ms Thang
Song~ This Little Light of Mine
Birthstone~ diamond
Birth flower~ Sweet Pea
Birth order~ youngest
Symbol~ heart shape
View~ my way or no way at all
Motto~ With God, all things are possible

Color~ Purple
Animal~ Jelly Fish 
Place to visit~ Aquarium 
Mentor~ God
Stuffed Animal~ Eyore
Music~ Lullabys
Bedtime routine~ Mobile and/or Projector
Therapy~ sit to stander
Jewelry~ earrings 
Pastime~ swimming/bathtime, watching jellyfish in LED lighting, or sitting in the tunnel of fish at the aquarium

Milestones since the 32 minutes of anoxia (lack of oxygen)
Potty training (for a couple of months)
Using switches (toys)
Pulling self up
Can sign "more" and "all done" in her own way
Knowing her surroundings and people in her life
Eye tracking
kicking/pushing away with hands if upset

Bucket List Achievements
Was in the Ocean
Rode a pony
Saw Fireworks
Traveled the country in an RV
Rode on an amusement park ride (two)
Was in a parade
Gave something of herself, freely
Received mail
Sent mail
Sat on Santa's lap
Went to a pumpkin farm
Has a personally decorated bedroom 
Has been tickled
Fell asleep in Mommy's and Daddy's arms
Petted an animal (goat, dog, and ferret)
Dressed up for Halloween (Dorthy from Wizard of Oz, Wonderwoman, and ) 
Smelled a flower
Got raspberries on her tummy
Felt rain on her face
Laid on Mommy's (and Daddy's) chest
Caught bubbles
Played dress up/dressed up
Walked in God's beauty
Watched fish swim
Swung on a swing
Saw flowers bloom
Watched a parade
Played in a pool
Went to a sporting event (was a part of the crowd)
Hung decorations up on a Christmas tree
Went to a drive in theater
Watched a bonfire
Had a birthday party 
Colored in a coloring book
Found Easter eggs
Went to a zoo
Wished upon a star
Was kissed on the forehead
Held hands
Made a snow angel
Feels unconditional love
Saw a rainbow
Went to a car show
Heard a live band
Traveled outside her homestate
Floated in a lazy river
Finger painted
Sat inside a petting Zoo (and a goat ate her hearing aid!) 

Interesting Facts about Kayli
1. Kayli helped set up a new policy at her school, making it possible for kiddos with trachs to swim in the school's pool!  She was the first kiddo with a trach to ever go in her school's pool!

2. Kayli donated 14" of her hair in December of 2012.  She was the youngest person to ever donate to Wigs for Kids, and with the most amount of hair! 

3. Kayli is a very spiritual girl, and has been known to leave her body and visit others. 

4. Kayli has been granted 8 miracles of life! The miracles include surviving: Full Trisomy 18, 32 minutes of anoxia, 7 weeks of Endocarditis and Sepsis without antibiotics, a perforated bowel, a surgically misplaced Gtube for 3 weeks, a pinhole sized airway for 3 weeks (resulted in a tracheostomy), a heart med overdose (10X the amount of Clonidine), a Potassium level of 8.2 (range is 3.5-5).  

5. Kayli loves to swim, and especially getting her hair wet! 

6. Kayli has had 18 surgeries throughout her life, including heart, spine, and abdominal.  Her family has had more than 60 surgeries, and Kayli does not yet "hold the record" for the most surgeries in the family. 

7. Kayli has met many others with her same "rare" trisomy diagnosis.

8. Kayli goes to school.  She LOVES school! 

9. Kayli's clothes size is age appropriate, but her shoe size is still only 6-12 months! 

10. Kayli is the youngest of 7 (including half siblings). 

11.  When Kayli was born, she could eat orally, and was fed breast milk for the first 9 months of her life. 

12. Kayli's life challenges are directly related to the 32 minutes without oxygen, and have minimal (if anything) to do with Trisomy 18 diagnosis.

13. Kayli's ears were pierced for her first birthday.

14. Kayli has visited 10 states in the USA

15. Kayli wears lipgloss regularly (she has many different flavors to choose from!)

16. Kayli teethed in a typical manner, and she has a full mouth of teeth, but her upper teeth are covered with an overgrowth of gums, caused by a seizure medication.  She will be getting her gums lazored back because the gum overgrowth is causing her jaw to grow upwards instead of out.  

17. Kayli had a cleft palate, that closed on it's own and she is allergic to the antihistamine, Zantac (both unheard of, but unique to Kayli)! 

18. Kayli does not like the sun, and sneezes every time her eyes are exposed to the sun. 

19. Kayli does not like the cracks in the side walk, nor strolling on bricks or any gaps in solid ground. 

20. Kayli collects piggy banks and hair bows.

21. Kayli has photo frames and earrings from each monumental place she has visited. The photo frames are placed on shelves in her room, as reminders of family times well spent.  


  1. God is a great God and i am so glad you enjoy your life with kayli. god bless and i will pray for yo and kayli. with love from octavia 12 years at all.

  2. Just saw your story on youtube. Praying for God's continued grace in your lives. Love from NY for your family