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 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
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 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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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
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 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
