Saturday, September 5, 2009

Home Again, Home Again...

Here is the story of how we drove the 6 hours to Cleveland and back again in the same day.

First, let's take a minute to acknowledge that we had literally been preparing for this trip all week. I had made lists and lists of lists, done around a thousand loads of laundry, collected a big fatty stack of personal records and medical records from all over the city, had everything meticulously packed and was ready to go Thursday night.

Because Kyle can't afford to miss any more work than necessary, we got up at 1:30 IN THE MORNING on Friday and headed for Cleveland for our 10:00 am appointment. It was long and dark and most of Ohio stank for some reason, but we made it in good time and then spent a very stressful and cramped half-hour in the parking garage of the Cleveland Clinic trying to change Collin and pile on the stroller everything we might need for our appointment and whatever tests might follow.

Cleveland Clinic itself was an experience I would easily call surreal. It sat on some of the most beautiful grounds I've ever seen - pristine, well-designed, zen-like. Being in the facility itself was like a cross between visiting the future and a resort. Kyle called it a 'weird space spa.' The halls were wide, airy, and unobstructed, lights shone up and down the walls, and meditative music played everywhere. Everything was state of the art, the cafeteria served delicious food, and the employees all wore spiffy uniforms. Eerie.

But the fact of the matter is that, no matter where you are, a doctors appointment is a doctors appointment. We filled out silly, repetitive paperwork, stripped Collin down to get weighed (at which point he had a massive poop, per usual), and were ushered into a little room that looked pretty much like every other examination room.

EXCEPT (side note alert, side note alert) for the fact that there was a THERMOSTAT on the wall. As in, a thermostat that actually controlled the temperature in our own room. Now, I don't know how much time most of you spend in doctors' offices, but if it's much at all then you know all too well that these offices are designed with the purpose of either freezing your eyeballs out of your head or melting your hair off. Maybe to get you into a state of submission, I don't know. If I had a nickel for every appointment for Collin that concluded with me sweating all the way through everything I had on, I'd have a lot of nickels.

So, we smiled goofily and adjusted the temperature to our liking and waited for the doctor. He came in about ten minutes later and apologized for our wait (do they have one of those emoticon faces for totally incredulous?), asked a battery of questions, examined Collin, looked through his records, read his MRIs, PET scan, and EEGS, and told us that we were doing everything we could.


As the appointment was winding down and something in me could feel the end drawing near without any mention of tests of any kind, I kept asking leading questions that started with "Sooooooo," but got nowhere. He smiled and told us he would send his report to our neurologist and left.

And it was 11:30. AM.

Our plan had been to stay in a hotel, eat at a fun restaurant, and generally make the most of what we assumed would be a weary series of events. Instead, we looked at each other, bleary-eyed and dazed by the whole experience and agreed that we wanted to get the heck out of Dodge and sleep in our own beds.

On the way out of town, Kyle was suddenly struck by the fear that we had missed something that Collin's neurologist was hoping for - that maybe we were supposed to have tests run and we should have stayed there and demanded that they make the trip worth our while. So, we called the neurologist's office back home and asked this very question, hoping to save ourselves another trip. The neurologist, because he is about twenty kinds of awesome, immediately called the doctor we had just seen at Cleveland Clinic, discussed the appointment with him, decided that he was satisfied, and told us to 'come home.'

So we did. And on the way, we decided that our twelve-plus hours of driving was more than worth it. We had confirmation from one of the leading experts in the field of pediatric epileptology/neurology that we hadn't missed anything - that Collin has been getting every chance possible from the get-go. We would drive a lot longer than twelve hours to know that.


  1. I'm glad you got official confirmation you're doing everything you can. I could have saved you the trip because nobody has better advocates then you two.

    Also, more video. ;)

  2. You all are troopers, through and through, and I'm glad to hear that you had a good experience at the Clinic. Should you ever need to return to Cleveland, I'm positive my parents who live just an hour south would be glad to host you.

  3. That hospital reminds me of Tomorrowland in Disney World. Something you'd see on the "Carousel of Progress" (we grew up drooling over the Magical World of Disney TV show :)). Definitely space spa.

    I'm very glad that nothing has been missed. Congrats, Team Collin!

  4. Amen to God providing for Collin in the 'Ville... I read this post with trepedation, waiting for "the other shoe to drop." And it never did. It sounds like he is getting everything he needs right there in the hometown. Praise the Lord! (Andrew's looking over the scans you sent tonight... Stay tuned for his full report!) =) Love you!

  5. awesome! confirmation of this is a blessing!