Thursday, February 3, 2011

The Unexpected

Colleen wrote:

It seems to take me a good three days to detox from nightly fist-fulls of dark chocolate chips, or to become comfortable in a new routine, or to deal with unexpected news. Yup, and this time my three-day-dealing spell didn’t disappoint. Last Saturday marked the third day of processing the news that Matt and I never, and I mean NEVER, expected Lilly’s neurosurgeon to say.  We are both at a better place since Lilly's appointment a week ago today.  Even still, it doesn’t seem possible, plausible, probably . . . you can fill in the statistical term that applies - I'm the one who squeaked by in college stats.

Lilly and I arrived at OHSU’s Health and Healing campus on Wednesday afternoon and made our first stop at imaging. X-rays were completed by tacking stickers on a bar above and below Lilly’s head to get the best angle for the shots. We’ve had three x-rays since the surgery, but all were completed with the halo and all looked as they should. The purpose of the imaging, then and on Wednesday, was to evaluate the alignment of Lilly's spine at the fusion site.

After the x-rays were completed, Lilly and I crowded into the main elevator, checked in at the neurology floor, and were ushered to an exam room where we waited for an hour. We perfected etch-a-sketch peacocks, sang and signed the alphabet, told stories, played “I Spy”, and danced in a full length mirror more times than I can count. During our wait, I could make out the sound of Lilly’s doc opening and closing doors, introducing himself, sharing muffled information, saying his goodbyes, and beginning the process over and over until I heard him say, “In what room is Lilly?” After a quick hello and a "How's Lilly doing", he said it . . . “Well, it looks like there is still instability.”

I don't recall what was said after that, at least for the first few seconds, but it was clear her doctor was disappointed in the fusion and surprised that she didn’t fuse like he had expected. In young children, a bone's ability to fuse is remarkable. In fact, one neurosurgeon recommended that we use a donor bone rather than Lilly’s rib bone for the fusion because, “. . . kids can fuse to anything.” After six weeks of halo wear, Lilly’s C1/C2 vertebrae should not have shown any sign of instability . . . but there is some movement.

We have an MRI and CAT scan scheduled for late February and will consult with her neurosurgeon  two weeks later; the crazy waiting game begins, again. If the MRI and CAT scan indicate instability, we will more than likely DO. THIS. WHOLE. THING. AGAIN. But, we are not going to proceed with another surgery until we find out why the heck Lilly’s spine did not heal the way it should.

Thankfully, we have an appointment at the Down syndrome Clinic at OHSU this week. What perfect timing. A neurologist, by the name of Dr. Pinter, who heads up the Clinic was the first person to inform us of Lilly’s abnormal MRI last June. We met him last February for Lilly’s initial evaluation at the DSC. Matt and I are setting aside most of our concern and sadness and worry until we can speak with Dr. Pinter. Lilly’s PT, Ryan, will also be with us at our annual evaluation - thank goodness!  Ryan is recommending that we have several blood tests completed that day to possibly determine what may be keeping Lilly from healing correctly.

Oh, there are so many things I want to and need to say - even shout. Mostly, after a full week of recovering from the biggest-cleat-kick-to-the-gut-of-them-all, I am thankful and even more in love with my little family. I again, have recalibrated and refocused myself to be more aware of Matt, Lilly, and Barrett. I don’t want to miss a moment of the three of them - just as they are, right now.   In fact, I best go to bed so I have energy for our little sprite and little-boy-wonder in the morning.  Oh, and you better believe I'll savor a fist-full of dark chocolate chips with my coffee in the morn.  Cheers!!!

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