Brush with fame!

Kenzie had a visit from the Colorado Avalanche today!  Yippee!  

We're waiting for an endoscopy scheduled now for between 4 and 4:30 this afternoon.  We hope this will clear-up what the issue is with her tummy.  Whether it's a blockage, SMA disease (the major arteries leaving the spine and running down your legs putting pressure on the duadanum since the relocation of her spine) or just a sleepy belly not wanting to wake-up after many many narcotics.  On the upside, she pooped today!  Around here, that is really something to celebrate!

Happy Birthday Mackenzie!

Although she was exhausted, she practically crawled off the bed to see her baby brother and get her birthday kiss from him!

What do you mean I can't eat cake?!  Forget it, I'm going to sleep!

Kenzie had an Upper GI done today and I got to see what I would characterize as a massive obstruction in her belly (I counted five screws high:  see x-rays from previous blog).  It has been described to me that when correcting this large a scoliosis curve, the major arteries that leave the spine at the level of the base of the stomach can sometimes put pressure on the upper intestine. We'll be taking the next steps to help her along tomorrow.  Doctors are eager to try the least invasive procedures available as the first step.  So am I!  Keep your fingers crossed for success.

She had a wonderful time seeing family this evening, celebrating her birthday.  However, the best gift she received today was a very well loved sweater from Addie!  Addie, you passed the love along, thank you!

Thank God for Humor!

Along the journey of Mackenzie's recovery, there is the crazy, no, insane, activities that happen in the background to Eric and me, her parents.  We handle our stress with humor.  A hopital stay never fails to provide the crazy material neccessary.  

Here is one of those moments...Since the day after surgery I have requested an unflavored toothette for Kenzie.  I happen to know that toothettes exsist that are unflavored or if you're lucky you can find a toothette that is purple; those are the rare and much sought after (at Children's Hospital anyway) grape flavored toothettes.  For those who don't know, a toothette is a spongie swab you use to moisten and clean someone's mouth who is unable to drink liquids.  The pink toothettes are flavored with mint (remember; pink, bad).  These were the first toothettes to arrive.  I asked the nurse to find any toothette that wasn't mint.  Kenzie hates to have her teeth brushed to begin with and having the mint toothette hospital memory and mint tooth brushing relationship will only make matters worse (at least this is my rationalization in my mommy brain)  The first nurse was stumped by this request.  Having not realized the toothettes were flavored at all.  Due to years of OT therapy at Children's Hospital under my belt, I know for a fact other toothette flavors exist and live here among us.  

My requests for an unflavored toothette continued and increased when Kenzie had to go on the n/g tube.  One nurse really did go all out to find an unflavored toothette and found the closest replacement she could, the "oral care and suction kit" with 3 steps of oral care "formulas", attachments for the suction system, and to her credit, an unflavored toothette!!!    

All along however, when a request is made, orders must to be written.  The nurses' desk secretary found a brown paper bag with Mackenzie's name on it on her desk this morning and delivered it to our room.  Look what fell out!...............

Any guesses how many times I asked for an unflavored toothette?

(wonder if these will all end up on our bill?  Probably!)

If you have to be at Children's Hospital, the holidays aren't the worst time to do it!  Kenzie was doing great today, her tummy felt much better and PT was thrilled to have the opportunity to get her up and moving.  She started by walking in her walker down the hall 15 mommy paces (yes, I actually just went out to see how many paces.  I know, I'm weird, but accutate and frankly a little bored!).  She was then able to participate in the "23rd Annual Harley Toy Ride"  She got to go downstairs, listen to the roar of 3000 Harley Davidson's, and MEET SANTA!  Yippee!!!!

To top off the day, she had a visit from her 3rd grade teacher!  She lit up, and had to show-off how well she was doing.  She sat up over and over again, did a little snorting and smiled those great melt your heart Kenzie smiles!!!  I'm kicking myself for not taking a picture of the moment.

Wow, what a day!  

A watermelon with a Kenzie attached!

Yesterday Kenzie's tummy was the size of a watermelon and thumped like one too!  The n/g tube was put in.  This morning it's a softball with a Kenzie attached.  Feeling so much better, and at 4 am this morning when she called out to me, she was sitting up!  It won't be long until she's crawling out of her bed!  There hasn't been a hosptial bed or chair that could container her.

Wait a minute....what's that?  Could it be?

A SMILE!!!!!!!!!!!!!

It's not that cold here in Denver but for my friends and family in Minneapolis, that picture has got to warm you all up!  Love to all!

  

Zzzzzz....

One more test done on the road to an anterior/posterior spinal fusion:

Sleep study went great for nearly the entire night until 4 am when Kenzie's sats went down and the nurse was required to turn on the oxygen.  I've known that she has had mild issues with apnea lately so the required sleep study came at a good time.  I'm hoping we won't have to have oxygen at home since her early morning wanderings include time with mom and dad in bed and trips to the living room to use her talker to wake-up the rest of the family!  

I just imagine all of us in our jammies hung up on a clothes line around the house!  If I didn't have my humor I'm certain I'd be under six feet of dirt by now!

Great News!

The gait analysis determined Kenzie should have freedom in her hips and they would suggest NOT anchoring the hardware of her spinal fusion into her pelvis!!! I'm thrilled she will be able to maintain that movement, I'm convinced she will be able to overcome the rest with no problem but felt she really needed that little bit of rotation to do it! Yippee!

This weekend is her sleep study, the next step on our way.

Glow Little Glow Worm!!

I was so proud of how Kenzie "performed" for her gait analysis today! This is the first of many many tests preceding her anterior/posterior spinal fusion surgery. In an effort to maintain a balance of flexibility and repair, the gait analysis will help the doctor determine the best course of surgery for Kenzie. With all the reflective balls attached to her she looked like she just may be starring in the next high tech video game! She did all of her very best "tricks." Laps back and forth with her walker, climbing into her wheelchair unassisted and turning herself around, and some crawling too.