Kayli in her new Water Way Babies aquatic therapy pool!

Kayli is pushing her head back, to get her hair wet! lol

Kayli moving her legs on her own, in the Water Way Babies pool!

Smiling, Kayli loves it! 

I held her head upright, because she kept wanting to lay back and dip her hair in the water! lol

Moments of our Lives (Our Kiddos' Bucket List)

Moments of our lives (Our Kiddos' Bucket List)

All four of our kiddos, including Kayli, have been given a fatal prognosis in at least one point of their life.  It has made our family look closer at how we choose to fill the days of their lives.  This is a list of things we wish for our kiddos to experience before they pass on.  It is important to us, to give them every opportunity to share such joys while they are in our care here on earth.  Our kids taught us it is the simplest joys in life that should be celebrated. If you can think of any other lifetime moments that you think a child should experience, please feel free to comment, and we may add it to their list!!

1.  Sit on Santa's lap
2.  taste/eat candy
3.  go to a pumpkin farm
4.  ride a pony
5.  have their own bedroom, decorated personally for them
6.  dance
7.  watch fireworks
8.  go in an ocean
9.  fly in an airplane
10. get tickled
11. fall asleep in Mommy/Daddy's arms
12. pet a dog
13. dress up for halloween
14. get rasberries on their tummy
15. feel rain on their face
16. smell a flower
17. take a train ride
18. blow and/or catch bubbles
19. lay on Mommy's chest
20. dress up
21. build a train set
22. swing
23. go for a walk surrounded with God's beauty
24. watch fish swim
25. see flowers blooming
26. throw a snowball
27. give something of theirs personally to charity or someone in need
28. play in a pool
29. watch a parade
30. toast a marshmallow
31. put up Christmas decorations/decorate the tree
32. go to a drive in theater
33. be a part of the crowd at a sporting event
34. watch a bonfire
35. see a sunset and sunrise
36. have a birthday party
37. color and find Easter eggs
38. take a bubble bath
39. do a good deed for someone else selflessly
40. receive mail
41. color in in coloring book
42. Go to a zoo
43. go to the circus
44. wish upon a star
45. get kissed on the forehead
46. hold hands
47. laugh
48. see a rainbow
49. feel loved unconditionally
50. make a snow angel and build a snow fort
51. see/hear a live band play
52. see a movie at a drive in theater
53. go to a car show

Rescheduled surgery, and a night to remember!

Kayli's surgeon's office called today to reschedule her Halo surgery, due to complications in the surgeon's personal life.  Kayli will now be going inpatient on Tuesday August 6th instead of Tuesday July 30th.  We have called the home care nursing agency to ask that Kayli's nurses be put back on her schedule for the week ahead.  

We are taking one day at a time, and are leaning our our belief that "everything happens for a reason".  Tonight, we as a family (minus our oldest son, Stephen) went to a baseball game!  Niko and Kayli have never been to a baseball game, so we put it on their "bucket list" and set off tonight to mark it off the list! Before we went into the stadium, we were able to mark something else off their bucket lists... seeing a live band!!! 

Tonight went on to be an A.M.A.Z.I.N.G night for our family!!! The general manager for the baseball team sent their mascot, Coop, to Kayli and Niko, for a personal visit! Then at the end of the game, Kayli, Jake, and Niko ran the bases with the other kiddos, AND Coop ran right up to Kayli and personally pushed her wheelchair around the bases!!! Coop spent so much time with Kayli tonight, and even gave Kayli and Niko an autographed ball!!   Thank you Schaumburg Boomers, for the wonderful memories!! 

 

Kayli's Audiology appt

Kayli has her audiology appt later today/Friday (rescheduled from last Friday). We will be ordering her a new hearing aid, and an FM system!  Many people with Trisomy have lower set ears, with narrow ear canals. This can make it hard to hear and/or test hearing. In February, Kayli was given an ABR (auditory brain response) test, while under anesthesia. It showed her hearing has not changed. She is profoundly deaf in her left ear (she would not hear a train horn if it was blowing right next to her), and hard of hearing in her right ear. She is currently aided in her right ear, but because her ears are lower set and somewhat thin/flimsy, her hearing aid does not stay on her ears well. We hope to find a more suitable aid for her. The FM system will work like a microphone and receiver. We will talk into a microphone that is wireless around our neck, and the receiver will be attached to her hearing aid so that she can hear us clearer. If you are deaf in one ear, it is very hard to decipher what sounds are prominent, and what are background noises. The FM system will help her distinguish between the sounds. Now if I could just find those ABR results to bring with us tomorrow..... lol

Kayli's Celebration of Life!

It's almost here!  Have you ordered your (free) tickets to attend Kayli's Celebration of Life, yet?! If you still need to do so, you can order by clicking here. We hope to see you there!  

Kayli is preparing for a surgery success!!

We took Kayli to see her previous Occupational therapist (OT) and Physical therapist (PT) today, for assessments.  The PT showed us ways to help elongate Kayli's spine, so she responds better to the Halo and gets increased correction in her spine curvatures.  The OT showed us how to help Kayli gain some abilities back (that she lost from the Potassium overdose/V-tach accident)!  We are charged up, and ready to give Kayli every chance to succeed!!! Just the short time in the therapist's office, seems to have sparked something in Kayli too!  She was even whistling out of her trach again! lol All aboard the Kayli train...toot toot!!! lol <3 

Handmade gifts for, and sent to Kayli! Thank you!!!!

7 year old, Rachel handmade these beautiful booties for Kayli! 

Thank you Rachel!! 

Love Quilts made this for Kayli! 

Each square is hand embroidered by gifted crafters across the US! 

Put together by Love Quilts! Thank you Vicki!! 

Bees!  

back of Love Quilt! 

Love this! 

back of  hospital gown, handmade by Gracie's Gowns! 

front of Gracie's Gown, made for Kayli! 

notice the pocket top left, and Kayli's name bottom right

Kayli's (rescheduled) Celebration of Life

We have rescheduled Kayli's Celebration of LIfe, for Sunday July 21st! 

Kayli's theme is Fashionista, so ladies and gents, please dress in your TRENDIEST attaire (this is certainly not a formal wear/black tie event). We will have subs/chips, a fashion themed dream cake, dessert tables (including Glutten free cupcakes), and an assortment of drinks (byob, wine/champagne will be available for a toast to Kayli's life!).  We hope to reschedule the band, Soda, and will have a fashion show, a fashion photo opportunity, fashion games (for all ages/abilities/gender), and karaoke! You are welcome to bring your own karaoke discs!  

 Each person attending must register for a ticket, as you must have a ticket to enter.  Tickets are free of charge. Your presence is preferred rather than presents.  For those insisting on giving Kayli a gift, handmade items made with love, or monetary donations will be graciously accepted.  Any donations collected, will go towards a newer van for Kayli (to accomodate her wheelchair lift). If you are not able to attend, but would like to donate towards Kayli's van fund, please use paypal address kwhistler@live.com or mail to Kelly Whistler Po Box 2 Cary, IL 60013.

If your child  (boy or girl) wishes to strut the cat walk, please contact me at kwhistler@live.com so it can be arranged. If you are interested in helping with the entertainment during the party, set up, or take down, please contact Kelly at kwhistler@live.com 

Spine surgery is rescheduled!

With much consideration and hesitance, the surgeon has lowered Kayli's chance of spine surgery survival from 90% to 80%. Although all Kayli's specialists have stated "Kayli can do this", the surgeon says he does not understand why they feel she is healthy enough for the aggressive, highly invasive surgery. He said he wants us to understand that he feels that 1 out of every 5 "Kayli's" that go into the hospital for this surgery...will not leave the hospital alive. We rebutted with "that means 4 out of 5 will live!". Kayli will have a tough challenge before her, but we believe this is the best option for her. If she does not have the spine surgery, her chances of survival are 0%. We will take the 80% odds over the 0% odds, every day! We have set the first of the spine surgeries (the Halo) inpatient date, for Tues, July 30th. In the meantime, we will be working hard to manipulate her, for a more flexible spine by doing range/PT. We will now also focus on re-planning her Celebration of Life! We are excited and encouraged with Kayli's new found energy and zest for life! We truly appreciate all your love, support, thoughts, and prayers!!! We, like you, are in awe of our Princess and all God has shown us, through her!

Coming off the Ketogenic diet

Since we started weaning her off the Ketogenic diet (Mon) and started the Elecare (formula), Kayli's seizures went from continuous (awake and asleep) to only 1 or 2 a day!!! I could be wrong, but my theory is that she was starving on the Ketogenic diet (she drastically lost weight and was clearly not getting enough nutrients). Once her body and brain were getting enough nutrients, her brain was able to focus on healing rather than surviving without! Kayli has made drastic progress in the last 2 days! She smiles, turns to look at us, "talks" with her mouth movements, and even has the energy to squeeze our hands now! She has a lot of recovery work ahead of her, but we are all in awe of how well Kayli is finally coming out of it! She's doing it again! Not only was Kayli given another miracle (Thanks be to God!!!), but she is now showing signs that she may be able to completely recover!!! # tears of joy