So many steps along the way...

We've been updated that the general surgeon who is doing the anterior exposure to the spine has completed his work.  That means our orthopaedist is now removing the growth plates between each vertebrae from the front.  Removing these will keep Kenzie's spine from torqueing around the rods as she grows...sounded like a good idea to me to do this...but what do I know.  The downside of this procedure is that they have to deflate her lung in order to access the area they will be working in.  YUCK!  Guaranteeing at least 24 -36 hours on a ventilator following surgery.  The anesthesiologist also just informed us that all of her lines went in really, really well which is a big relief, because they will be using them to follow closely the stimulation positive or negative to her spinal cord. 

Kenzie's last ditch effort at escape! 6:30 a.m.

Out of one pair of jammies into another, but thrilled to see 9News on the TV

Inflated warm air blanket:  We teased Kenz that she looked like a great blueberry, ala Willie Wonka's Violet

Great Marshmallows Charlie Brown!  Off to surgery.

We're Off!

It was a long start to the morning.  Kenzie is under sedation now and surgery is about to begin.  Mom and Dad are fed and now the waiting begins.  Here are a couple of pics from the early morning preparations. 

Pre-op: We are on target - 9 days till surgery. Everything has checked out fine and most importantly safe for surgery to go ahead. Our baby girls' next x-ray will be something to behold! Do you think she'll set off the security devices at the airport on our next family trip?

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.

How do you know you've made the right one?

I haven't added to this blog in awhile. I have been struggling to wrap my head around the newest challenge Kenzie has to face. It had been determined that it is time to either do something, or do nothing, about her severe scoliosis. Doing something means an anterior/posterior spinal fusion. Her entire spine is effected in an s-shaped curve.

I have known that somewhere down the road surgery would be a possibility. Knowing it was still down the road gave me the ability to deal with it. When confronted with the future... keeping my emotions in check is a constant battle. I found myself standing in the middle of Target the other day tears welling up in my eyes and had to run out of the store before I absolutely burst into seizure-like sobs.

The simple question that rolls around in my mind is this: Will this insanely invasive surgery really, REALLY improve her quality of life?

Along with that are the questions of actually surviving the surgery, will the surgery end up causing her more pain in her future. How will it feel to be maybe 5 ft. tall for the rest of your life. The surgery will end any additional growth in her trunk. (She's only 8, she has a lot of growing to do still!!) Why in the world would I voluntarily put my baby through this?

This is by far the worst part of the job of Mom. Making the decision to do it or not to do it. Like I said at the beginning I'm still trying to wrap my head around the shock, get my emotions in check and then throw myself into the research phase. Just like the 7 stages of grief, there always seems to be stages when confronted with these overwhelming decisions. Without the input of Kenzie I feel like I'm out there just hoping I'm making the right one for her.