In answer to a question..."Do the dr's expect Kayli to live?" Original blog date Aug 29, 2009

In answer to a question... "Do the drs expect Kayli to live?"

by Kelly Essem Whistler on Saturday, August 29, 2009 at 8:12am

Depends on the day. Most days now, they say she will live 6 months or so. They really don't know. They say she won't regain any more cognitive brain activity, but they also said she wouldn't regain her brain stem activity (breathing on her own, etc.) but she has. They say she can't/won't be able to do certain things, then when she does, they can't explain it. So, only God and Kayli know what is to come... for now, we are just enjoying our limited time with her. We want her home, whether it be to pass or live. Our goal is to get her home without the ventilator... very possible.

The kids are going through a very tough time, but it seems like things are getting better for them. We did a lot of momentous things with them last Sat. and have instilled it in their heads that Kayli's body is not as strong as her spirit. We've asked them to talk to her spirit, not her body, and to ask God for guidance in this, our difficult times. We've told the kids that when we go on our Disney (Make a Wish) trip this Dec., we were going to have to leave Kayli in respite care during the day. If she passes before then, they can call upon her to hop on their shoulder and ride a roller coaster ride with them... she will fit the height requirements, and can join our family in the fun! We told them all they need to do is be open to her spirit, and ask God to help them stay connected to her.
We are grateful Kayli has given us the time she has, so that we know who she is... stubborness and all! I am happy that I was able to pick out outfits that I can relate to how good they looked on her (some parents never get to see how that outfit would look on their child). I am grateful I know the strength of Kayli's Will. I will forever remember how it feels to comfort her, and remember how she wouldn't let me hold her against my chest at first. I will cherish the times she endured Mommy's cuddle time, even when she didn't want to. And I will forever be grateful that she learned to trust in me and in time turned to me to comfort her (on my chest). I love the feeling I get in my heart everytime I think of rocking her, singing to her, and humming with her cheek to cheek. I have so many treasured memories of her, and I am grateful for each moment! Thank you baby Kayli!!!! I love you more than words can say... but you already know that. You feel it too, I know. I will always be here for you, no matter where your journey takes us.

Our prayer:
God, please give us the strength to stay in the moment. Help us to enjoy our family as we are. Guide us to make the righteous decisions. Help us to keep our faith in yours and Kayli's plan. Please give Kayli, our family, friends, and medical personel the courage to endure, the love to hold us, and the strength to hold our faith in you. I ask that you keep our connection with Kayli strong, and open our hearts and minds to receive your love. We ask for your help in recognizing your work and our loved one's spiritual existance.
In your name, we pray,
Amen