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Mele Kalikimaka

12/23/2017

13 Comments

 
PictureAlly wanted to sit in big sissy's lap
The breathing tube is out.  Just pulled it, about an hour ago.  Placed on BiPAP.  So far so good.  We can usually tell within 2-4 hours if she is going to fly.    

PICU Day 9.  We've had a rollercoaster of a week.  Well... not an American Scream Machine week, but a Miracle Strip kids coaster kind of week.  Bentley wanted to drive us a little crazy a few nights ago and start running a high fever while throwing up (all while on the ventilator with tube feeds running).  The anxiety only took one year of Lindsay's life, could've been worse.  Her lung started allowing some air back in on Thursday.  Since then, she has progressed pretty well, all things considered.  Slow but steady.  

It is very obvious Bentley is bored out of her mind.  Around Day 5 she started pulling out her pigtail and fighting us when trying to keep her on her side.  She hasn't really wanted us touching her until the last day or two.  We tried putting her Angel Ears (what we call her cochlear implants to Ally) on, but she basically told us "No Thank You".  She DID get a real bath last night.  Not a bath-tub-bath, but a wet-to-the-bone with a wash basin and all natural dye-free, scent-free, suds-free, gluten-free soap.  When the nurses aren't looking I may use some Dove.  We feel good with the progress.  Her docs, nurses, and theraptists have been taking great care of her, and are very in tune should she take a turn and need another couple days of rest.  

Thank you for the continued prayers.  This evening will tell us a lot.  Although we are ready to spend Christmas here, I would rather her sitting up and able to eat chicken salad.  

At least we can say it has been a productive week.  Ally is now to the point of Rotten (with a capital R), thanks to Mimi and Pop.  Lindsay has signed up both of our Team Bentley Mercedes Marathon BellRunner teams, you can donate by clicking the links.  Mom came to town and washed our sheets.  Three big wins.  More updates soon.  Have a Merry Christmas if we don't see you.  I've got the Bing Crosby playing in her PICU room, sorry if there are any Scrooges down the hall - I'll give you a Christmas Tree Cake. Mele Kalikimaka!

Regarding our Marathon teams: I have committed to the relay AND Half marathon this year, for some crazy reason.  For those who don't know, the primary beneficiary of the Mercedes Marathon is The Bell Center for Early Intervention Programs (where Bentley received the majority of her therapy until she was 3yo).  I am proud to say I have been asked to serve on their Board of Directors for the next few years.  We are so incredibly thankful for the impact they have had on Bentley's development, and our support system.  We run the marathon as official BellRunners, supporting the Bell Center with any money raised.  If you would like to run too, sign up, or let us know.  We can always start another team.

13 Comments
julian
12/23/2017 03:46:03 pm

Our prayer is that GOD will bless your every effort

MERRY CHRISTMAS

thanks for your updates

Reply
Dawn Carter
12/23/2017 03:48:35 pm

So glad that B is improving. Sending you and Lindsay lots of hugs and energy...and continuous thoughts and prayers for B! Merry Christmas! We love y'all!

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Jeanne Halfman
12/23/2017 11:54:25 pm

Praying for Bentley AND her parents!

Reply
Elyse Corbitt
12/24/2017 02:23:33 am

Praying for Bentley this morning... merry Christmas Eve

Reply
Lisa Horne
12/24/2017 04:23:31 am

Praying for Christmas miracles!!

Reply
Denise Lewis
12/24/2017 05:00:14 am

Thank you for your updates and for being such wonderful parents and role models for your sweet girls.

Reply
Linda /Bobby Humphrey
12/24/2017 05:11:58 am

We pray for healing for Bentley often and a watchful blessing over Ally. Also, if you spend your Christmas there in PICU, we pray the Lord would grace you with the sweetest memories of all! Merry Christmas.

Reply
Colette Tatum
12/24/2017 08:09:19 am

We pray daily for your sweet family. We are amazed by your strength and positive our look. Prayers continued for all. We wish you a Merry Christmas & a healthy New Year!

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Juju and Papa
12/24/2017 01:15:46 pm

Praying for continued improvements. Love to all of you.

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Jess
12/25/2017 11:37:30 am

Love y’all more than you know. Thankful for that sweet angel Bent bug, and the amazing job you and Lindsay do in parenting and loving her. Thanks for all of the comedy in the midst of the update. Meant to post this on Saturday, but instead am posting now. Love y’all!

Reply
Stephanie Yanko
12/26/2017 07:12:59 am

What a precious family you are! Wishing all of you a beautiful and blessed New Year. Prayers always!

Love you guys,
Stevie

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Beverly Kilpatrick
12/26/2017 07:53:41 am

Praying for Bentley and her family everyday!

Reply
Julie
12/30/2017 04:47:03 pm

I love keeping up with your sweet little Bentley! Thank you for posting. You are an amazing family!

Reply



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    I will be writing most of these.  Justin, that is, the dad.  Lindsay will provide her input.  

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