Kayli's first surgeon and admission date is set

Kayli's hospital admission date is Wed. June 12th, 3 days after her Celebration of Life!  We have a LOT to do to get clearance for the surgery on the day of admission (to put the halo on). The complete spine surgery is tba, depending on how well Kayli tolerates the halo (to stretch out her tendons and muscles and set her up for the ultimate results for spinal corrections).

We Choose Surgery!

We feel so much better after the surgical appt today!  There is a 90% chance she will make it through the surgery! <3  We will get a call Tues, to move forward with the inpatient Traction (PICU), then on to the surgery! We were basically given a choice 1. no surgery and Kayli will not be with us much longer 2. surgery with 90% chance of a better and longer life! <3  We choose surgery! <3 

Please say prayers of comfort and guidance for our family

Please pray for comfort, as we go forward with our decision of spine surgery for Kayli. I'm leaning on my life motto, "Do your best and give God the rest", knowing that it is ultimately in God's and Kayli's hands... but I keep second guessing our decisions for her. She really needs this surgery, but it is a MAJOR surgery and I don't want to lose her, although I know that is selfish of me. I keep thinking we may have more time with her if she doesn't have the surgery, but then again, we may have more time with her if she DOES have the surgery, and her life will be much easier with the results of the surgery. As her parent, I want to go to sleep at night without regrets, knowing I did everything I could for her, to help her in life. It is such a personal journey, and I thank you all for respecting and supporting us in this amazingly Blessed journey we have been given, with our very loved and adored, Kayli. We would chose the same pathways for each of our 4 children, and we have! Surgery for us, means hope in our future together. Whether we make it through our journey a day, a week, or years...we know that we are inseparable spiritually, and God has Blessed us. Thank you for the positive thoughts and prayers for guidance and comfort! God Blessings to  You, Now and Forever. <3 

Kayli's new ride!

Kayli won a Rifton bike from Friendship Circle of Michigan! 

She's doing it again!  Defying all odds against her, Kayli can pull herself up to a sitting postion! <3 You tube, Kayli pulls herself up to a sitting position!

Micropartical oxygen injection into veins can keep you oxygenated for 30 minutes even when in respiratory distress

This is awesome!  For those who are in heart failure, lung failure, airway obstruction, etc...if this in injected, it makes oxygen in the blood stream for 30 minutes! Amazing discovery! Micropartical oxygen injection

Injecting life-saving oxygen into a vein

Oxygen microparticles could deliver oxygen when breathing is impaired

June 27, 2012

Boston, Mass. - Patients unable to breathe because of acute lung failure or an obstructed airway need another way to get oxygen to their blood—and fast—to avoid cardiac arrest and brain injury.  A team led by researchers at Boston Children’s Hospital has designed tiny, gas-filled microparticles that can be injected directly into the bloodstream to quickly oxygenate the blood.

The microparticles consist of a single layer of lipids (fatty molecules) that surround a tiny pocket of oxygen gas, and are delivered in a liquid solution.  In a cover article in the June 27 issue of Science Translational Medicine, John Kheir, MD, of theDepartment of Cardiology at Boston Children’s Hospital, and colleagues report that an infusion of these microparticles into animals with low blood oxygen levels restored blood oxygen saturation to near-normal levels, within seconds. 

When the trachea was completely blocked— a more dangerous “real world” scenario—the infusion kept the animals alive for 15 minutes without a single breath, and reduced the incidence of cardiac arrest and organ injury. 

The microparticle solutions are portable and could stabilize patients in emergency situations, buying time for paramedics, emergency clinicians or intensive care clinicians to more safely place a breathing tube or perform other life-saving therapies, says Kheir.

“This is a short-term oxygen substitute—a way to safely inject oxygen gas to support patients during a critical few minutes,” he says. “Eventually, this could be stored in syringes on every code cart in a hospital, ambulance or transport helicopter to help stabilize patients who are having difficulty breathing.”

The microparticles would likely only be administered for a short time, between 15 and 30 minutes, because they are carried in fluid that would overload the blood if used for longer periods, Kheir says.

Kheir also notes that the particles are different from blood substitutes, which carry oxygen but are not useful when the lungs are unable to oxygenate them. Instead, the microparticles are designed for situations in which the lungs are completely incapacitated. 

Kheir began investigating the idea of injectable oxygen in 2006, after caring for a little girl who sustained a severe brain injury resulting from a severe pneumonia that caused bleeding into her lungs and severely low oxygen levels. Despite the team’s best efforts, she died before they could place her on a heart-lung machine. Frustrated by this, Kheir formed a team to search for another way to deliver oxygen.

“Some of the most convincing experiments were the early ones,” he says.  “We drew each other’s blood, mixed it in a test tube with the microparticles, and watched blue blood turn immediately red, right before our eyes.”

Over the years, Kheir and his team have tested various concentrations and sizes of the microparticles to optimize their effectiveness and to make them safe for injection. “The effort was truly multidisciplinary,” says Kheir. “It took chemical engineers, particle scientists and medical doctors to get the mix just right.” 

In the studies reported in the paper, they used a device called a sonicator, which uses high-intensity sound waves to mix the oxygen and lipids together. The process traps oxygen gas inside particles averaging 2 to 4 micrometers in size (not visible without a microscope). The resulting solution, with oxygen gas making up 70 percent of the volume, mixed efficiently with human blood.

“One of the keys to the success of the project was the ability to administer a concentrated amount of oxygen gas in a small amount of liquid,” Kheir says. “The suspension carries three to four times the oxygen content of our own red blood cells.”

Intravenous administration of oxygen gas was tried in the early 1900s, but these attempts failed to oxygenate the blood and often caused dangerous gas embolisms. 

“We have engineered around this problem by packaging the gas into small, deformable particles,” Kheir explains. “They dramatically increase the surface area for gas exchange and are able to squeeze through capillaries where free gas would get stuck.”

The study was funded by three awards from the Technology Development Fund at Boston Children’s Hospital Boston and a U.S. Department of Defense Basic Research Award to Kheir.

Contact:
Rob Graham
617-919-3110
rob.graham@childrens.harvard.edu

Boston Children’s Hospital is home to the world’s largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 1,100 scientists, including nine members of the National Academy of Sciences, 11 members of the Institute of Medicine and nine members of the Howard Hughes Medical Institute comprise Boston Children’s research community. Founded as a 20-bed hospital for children, Boston Children’s today is a 395 bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Boston Children’s also is the primary pediatric teaching affiliate of Harvard Medical School. For more information about research and clinical innovation at Boston Children’s, visit: http://vectorblog.org.

Kayli's spine

Kayli has had an amazingly well week! We have been stretching out her back, and added a little extra water to her diet, which has been keeping her heart rate in a more typical range and her oxygen saturations have been in the high 90's as well! We hope to get more information today, about her inpatient date for traction (a halo) and spine surgeries. 
I am hesitant to post pictures publicly of her spine, because it is very distorted due to the prolonged anoxia/lack of oxygen (when she passed away for 32 minutes). Just know that her spine is severely affected, and is compromising her basic organ functions. Her 3 life threatening spine deformities (Kyphoscoliosis, Scoliosis, and Lordosis) have nothing to do with Trisomy 18, however, her recently diagnosed spina bifida and small congenital fusion likely are from Trisomy 18. The reason you see her head tilted to the right in many of her pictures, is not because she can't hold up her head, it is because she is trying to adversely correct the abnormal direction her spine is curving. The extensively intensive spine surgery will be to guide the life threatening spinal curvatures that are a result of her lack of oxygen (neuromuscular complications). I will most likely post pictures of her spine and corrections in a diary like form as we continue this journey. Please continue to pray for guidance and comfort, as we continue down this terrifying journey. God's Blessings unto you! 

Kayli's Celebration of Life event

Kayli's Celebration of Life will be held in Schaumburg, IL on Sunday June 9th.  Please contact me at kwhistler@live.com if you wish to attend, so I can either send you tickets, or put you on the attendance list.  You will not be able to enter the party without either a ticket or being on the list.  There is no charge for the tickets.  Please dress in your most trendy attire, as her Celebration is themed "Fashionista!".  See you on the runway! 
~Kelly

Oklahoma tornado

Our thoughts and prayers go out to all those affected with the OK tornado. May the Lord comfort you and guide you through this devastating natural disaster. <3 

Kayli's Celebration of Life!

Kayli's Celebration of Life will be held on Sunday, June 9th. The Celebration will be held indoors, and you must have a ticket to get in. Dress to impress, in your most trendy attire, as Kayli's Celebration is themed Fashionista! See you on the Runway! 

The Celebration is open to the public, so everyone is invited, but you must have a ticket to get in. The seats are limited, so first responders get the tickets. If you plan on attending, please comment with the requested ticket count, and I will contact you with the Venue location and time, and send you tickets to attend. Please do not say you are going if do not plan to attend, as there are limited spaces available. For more information, please contact Kelly at kwhistler@live.com 

Please feel free to share this event with those who are interested in attending
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Celebration of Life, Sunday June 9th (save the date). Need help with an available Venue (location)!

We are planning Kayli's Celebration of Life for Sunday June 9th.  (save the date). Venue tba.  Please let me know if you have a lead on an open venue (location) for Sunday June 9th, as we want to have her Celebration before she goes in for spine surgery.  Thank you. <3 

A Special Needs Mother by Erma Bombeck

The Special Mother 
by Erma Bombeck 
Did you ever wonder how mothers of disabled children were chosen? 
Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. 
"This one gets a daughter. The Patron saint will be Cecelia" 
"This one gets twins. The Patron saint will be Matthew"
"This one gets a son. The Patron saint.....give her Gerard. He's used to profanity"
Finally He passes a name to an angel and smiles. "Give her a disabled child".
The angel is curious. "Why this one God? She's so happy"
"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you"
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"
The angel gasps - "Selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"
"And what about her Patron saint?" asks the angel, his pen poised in mid air.
God smiles "A mirror will suffice"

Kayli lives at home with us...for now

Kayli lives at home with our family, instead of in a hospital, because of this cost cutting state waiver program!  Changes being made to the program, will force Kayli and others like her, to survive (certainly not a life) in the hospital! Kayli belongs with us at home!  Kayli attends school, but that right would be taken away if she were forced to live in a hospital! Support our IL MFTD waiver, so Kayli can continue to live with us at HOME!   For more information, please visit Save the MFTD Waiver

Kayli won a Rifton, special needs bike!!

Kayli just won a special needs bike!!!! Thank you for all who supported her in this contest!!! I am in tears as I think of the great motivation this is for her to make it through this surgery!! Being able to get on this bike and ride, will give her such a feeling of control in an otherwise constraining body, as she relearns muscles movement! Thank you Thank you Thank YOU!!!http://www.friendshipcircle.org/blog/2013/05/13/29-winners-in-the-the-great-bike-giveaway/

The Mirror

The Mirror: When I look in the mirror, I see love for my children, in my eyes. I see a proud smile, beneath the difficult layers of my life. I admire how well my shirt and yoga pants stand on their own, while promises to get to the laundry yet another day, race through my mind. I see flyaway, frizzy strands of hair that don't stand a chance in the priorities of my life. I see wrinkles that confirm I've woken up to many mornings of life, and a sagging chest that once nourished life beyond my own. The "tire" around my abdomen reminds me of the home that once was, for 4 of God's beautiful children. I swear I can see more wrinkles appear on my cheeks, as I remember the months filled with butterfly kicks and cherish the thoughts of butterfly kisses, in the months to come. I am humbled when I look in the mirror. I recognize my soul, but am not as familiar with the complete image thrown back at me. I am not opposed to getting more familiar with a glorified image....as long as my soul dominates the image before me, when I look in the mirror. ~ Kelly Whistler

Puzzle of life

Imagine your life as a puzzle.  There are many trial by errors as you pick up each piece, and try to fit the piece in, every possible way.  There is a slim chance that the piece will fit with the first try, but the challenge sparks your will, to push forward, and complete the puzzle.  You envision your pride when your struggles produce victory! 
When you get lost in trying to force the wrong piece to fit, you set it down and start working with another piece, for a fresh new look on your puzzle.  If you look at the puzzle box for a broader picture (God), you will find the guidance you need to fit the next piece.  For some, it's easier to do the border pieces first, while others pride themselves in doing it a more challenging way (middle pieces first).  There is no wrong way, nor right...as long as it is your own puzzle you are putting together.  For, if you try fitting your neighbors piece in your puzzle, or extend your pieces to another....neither of the puzzles could ever be completed. Even when a neighbor helps you, it is truly YOU who has taken the journey to complete your puzzle.  It is wise to help each other, in the puzzles of life, for one day you may be the teacher, and others you may be the student. <3 ~ Kelly Whistler 

The Bumblebee and Trisomy

Like Bees, Loved Ones with Trisomy should not be feared, nor disregarded, for the love would not be gathered, nor the flowers bloom....

(Bumblebee) Trisomy Tidbit: 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

Get Well cards for Kayli!

Kayli received these get well cards, for her hospital stay this week. <3 Thank you Maddie, Sophia, Miss Susan, and Ella with Living Christ Lutheran Church, and Jane Pedersen!! <3 

 

Kayli is home and doing well!

Kayli is home and doing well!  She is enjoying her new bed.  Mommy even got to sleep with her last night (there wasn't an overnight nurse)! The most wonderful thing to wake up to, is your lips against your sweet child's head, and your loving arms wrapped around her body.  Thank you Lord, for the treasured memory, to last a lifetime!