Friday, August 1, 2014

The End of an Era

It's hard to believe that it's been five years since we started Collin the Champ. In the beginning, I thought the blog would be a solution to a problem: how to keep people updated on the goings-on of Collin without spamming too many inboxes. But from the first entry, I realized it was also going to be a place for processing the uncharted reality of our new lives.

Now, though we are still defining our 'normal' as we go, we feel like Collin has outgrown Collin the Champ. He has become so stable medically and his life is about much more than doctor and therapy appointments. We're doing less updating and more living these days, which is a very good thing.

So, starting next week, Collin the Champ's blog will be retiring.

There are no words to express the value of the love and support we have received from those of you who have followed Collin's struggles and victories these past five years. It's been a surprising and priceless gift.

Thank you so very much for walking this road with us.

Yes, folks. That's a mohawk.
He's peeking at you to see if you like it.
Some sidewalk chalk art a la Heather and Collin.
It's a portrait of our family thanking you.

Tuesday, July 8, 2014

State of the Collin

Without our beloved Heather (two more weeks!!), the summer has been a bit of a blur around here.

1. Collin had a slew of appointments, but nothing more resulted than 'watching' and 'tweaking'. Sometimes I'm still overwhelmed with gratitude to be in this long period of relative stability.

2. Collin and I were guest speakers at a ketogenic diet conference at our local children's hospital. The attendees were primarily doctors, nurses, and other health professionals and we had such a great time sharing Collin's story, how we 'do the diet', and answering all kinds of interesting questions. We're thinking about taking our act on the road.

3. Just like every good summer, this one has been packed with fun and relaxation already. Here is proof.

Peas in a pod.
Trying out the playground at our pal
Grace's birthday party.
Sunday morning on the patio.
There's no nap like a pool nap.
Walking the pedestrian bridge.
Cousin time.
Blueberry picking.
Collin supervises. Closely.
Happy Fourth of July!
Firecrackers! (Daddy is running from the flames off camera.)
My faves.

Friday, May 23, 2014

Collin's Chore

Everybody pulls their weight in a happy household, and Collin is no exception. He sometimes keeps me company in the kitchen or cheers me on while I vacuum (I have never in my life seen a kid so enraptured by a vacuum cleaner), but his primary responsibility is getting the mail.

In our current living situation, that involves hopping on the trusty tricycle, leading Mama to the mail area, impatiently trying to ride away while she gets the mail out, pedaling around the bank of mailboxes three to twenty-seven times, and then carrying the mail home.

His favorite part of this job, by far, is riding around the bank of mailboxes. It must be some combination of the super smooth concrete and the shade and the mailbox pattern flashing by, but he rides it like his own private racetrack. We've only had a couple of close calls with neighbors trying to get their mail during race time. One of these days hopefully he'll get interested in steering.

Thursday, May 15, 2014

In Other News

It's not that I forgot to mention the fact that Collin is standing up by himself. It's more that I was waiting around, hoping it was a real thing and not a fluke.

It's real.

It all started about a month ago when Collin suddenly decided he loved his treadmill therapy again. His leg movements got all reciprocal (left-right-left-right) and his intensity was off the charts. So, we decided to run with it and started an intense burst of treadmill therapy.

Around the same time, we got a new kind of orthotics (we like to call them 'standing shoes' around here) that use a different material and design to create compression on Collin's feet while also freeing his toe joints to move more naturally. Almost immediately, we knew something was working.

First, there was this.

Then there was this. He has help from the harness if he falls, but he's bearing his own weight and using his hand to brace himself.

And then there was this when I came home from running errands last week. I won't insult anyone's intelligence by trying to describe what it was like.

And our Upsee should be on its way any day now. Hold on to your butts.

Friday, May 9, 2014

How It Went

We made it. And we've (mostly) recovered.

I must admit, it was the best sleep study we've had so far. Collin is overall just a better sleeper, which helps tremendously. Also, we had some very good nurses and a better plan this time. Plus the fact that Cincinnati Children's is just a wonderful facility and things tend to go about as smoothly as possible there.

Part way through the gearing-up process,
hanging with his special friend, Mr. Bear.
(Thanks Aunt Carol! See you soon!)
BUT. The sleep study is just not a well-designed system, and that's all there is to it. It doesn't create a natural sleep environment and necessitates multiple sleep disturbances throughout the night. For a test intended to assess the quality of sleep, that seems a little counterintuitive to me.

We turned the lights out around 9:00 pm and it wasn't long before I was out of bed half a dozen times because of a nurse or sleep tech entering the room. With a flashlight. I stopped keeping track pretty quickly because it was just making me grumpy(er), but there had to be nearly 20 similar instances over the course of the night. Somewhere around 2:00 am, I started to wonder whether it would ever really be over.

It's not necessarily the fault of the nurses or techs. They have to make sure all of the equipment is functioning properly so the study is as accurate and helpful as possible. And pseudo-gluing dozens of sensors to a squirmy, head-rubbing 5-year old is a lesson in entropy.

Collin's bank of monitors. You can't tell
from this how luminously they glowed in
his face.
But 6:00 am did come. The tech couldn't tell us anything about what he did with Collin's BiPAP settings overnight, except that he never had to use oxygen. A sleep study is a very long and complex study to read, so the report won't be ready for a couple of weeks.

Four days later, Collin still has adhesive collecting lint in various places on his body and we're all still a little off in our sleep routines. But we're glad to have the test behind us, looking forward to hopefully learning something helpful from the report, and thankful to have access to quality healthcare for our boy.