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.