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.

Sunday, May 4, 2014

Sleep Study, Take 12

OK, we haven't done eleven sleep studies. But we might as well have.

In my experience so far, sleep studies are more studies in torture than in sleep. There was the one with the arm splints. The one where I stared at the CO2 monitor for 6 hours. The one with the 15 attempts to adjust an ill-fitting BiPAP mask. Lots of things happen in Collin's sleep studies. One thing that doesn't happen very much is sleep.

And I admit that I dread them. Not only are the studies themselves nerve-wracking, but the outcomes are difficult. They involve wrapping our minds around a new stress (your child doesn't breathe on his own at night) or introducing a new stressful treatment (strap this high-pressure machine to his face and see if it helps).

The amazing thing is that it's actually been three years since our last sleep study. The actual rule with the Aerodigestive team who treats Collin is that sleep studies should be repeated every two years as long as intervention (oxygen therapy, BiPAP, etc.) is being used. But I confess that when our pulmonologist left and the new one somehow believed our last study had been one year previous instead of two, we didn't enlighten her as to her mistake. Collin had FINALLY adapted to his BiPAP machine and his episodes had spaced out considerably and we had a few months of normal-ish sleep under our belts and we would be DARNED if we were going to give that up for a silly little rule. Instead, we bought another year.

So tomorrow we're heading to Cincinnati for a three-year follow-up sleep study. This will be a titration study, in which Collin will use his own mask and be hooked to a BiPAP on his own settings. Then throughout the night, the technicians will start fiddling, dropping his level of support and monitoring his reaction to their adjustments. Given its nature, we're cautiously optimistic that this study won't be as terrible as those in the past.

The ultimate goal, of course, is for Collin to be able to sleep without a BiPAP machine one day. As with so many other Collin-things, though, nothing we do really affects whether or not that will happen. The role of the BiPAP is to give him only the help he needs as long as he needs it. All we're hoping to find out from tomorrow night's study is that he doesn't need quite as much help as he used to.