Tuesday, October 22, 2013

Getting Away

I may have mentioned it before, but we're not good at taking breaks around here. We go and go until we either break down or derail. Collin tries to exert a positive influence, but we're hard cases.

But this weekend, we went away for a long weekend. No devices. No therapies. No work. Just mountains and a cabin and each other.

It was empowering, restful, fun, and rejuvenating. The biggest lesson learned? We need to take at least four days next time.
















Tuesday, October 15, 2013

Bring On Fall!

We're autumn people around here. We like layers and soup. We don't even mind some dreary days. So, since August and October swapped a couple of weeks this year, we're chomping at the bit to get going on our fall festivities. This weekend was our kick-off! So please pardon all of my exclamation points!

Friday, we visited Blackacre Farms with the cousins. We utilized the communal swing, explored the barn, and took a walk. I'm sad I didn't get a picture of Collin feeding the horse. They really liked each other. Or at least the horse liked Collin's carrots.


Saturday was pumpkin picking day. Collin got to feed some sheep, take a hayride, taste an apple cider donut, pick a pumpkin, and ride the John Deere barrel train!






We ended the weekend up on the farm, where we had Collin's quarterly NACD evaluation and got in some practice for our upcoming family vacay in the mountains!


Now if we could just get some cool temps and changing leaves, we'd really be in business.

Thursday, October 10, 2013

State of the Collin

Sometimes I can barely keep up with this kid and his schedule, much less write about it all, so I've fallen off the blogging wagon again. Here's an enumerated list to catch me up.

1. New Doctors
A while back, I thought to myself, "You know what we need, Self? More doctors!" So I got Collin in with a well-known pediatrician in the area who specializes in holistic treatment. I was very impressed with him (He read Collin's medical records. Like, all of them.) and he is ordering some very detailed blood and urine work to see if Collin has any deficiencies and how his body is using what he's getting in the way of supplements. After that, we'll decide whether to look for toxicity issues. We're not looking for a panacea here, we're just hoping to give Collin the opportunity for maximum health and development within his capability. And we're also not leaving our old pediatrician (I shudder at the very thought); rather this new doctor is serving in more of a consultant role.

Our new ophthalmologist, on the other hand, is a trade-in. We hadn't been getting much help from our old one for years and got a recommendation for a good one from another highly respected doctor on our team. It was a great move. He was very thorough, open, and a great listener. In fact, he determined that Collin does not technically even have CVI (cortical visual impairment), as Collin's vision is improving and CVI is more of a static condition. Instead, Collin's condition would more accurately be called DVM (delayed visual maturation). On top of that, Collin's far-sightedness has improved dramatically and he has developed a degree of astigmatism, which makes everything blurry. But since he is trying to use his vision so much, the doctor felt that it would be worthwhile to revisit glasses, which brings us to...

2. Collin Got Glasses. Again.
You may remember this brand of awesomeness:


And now brace yourself for the new and improved:


And of COURSE he refused to open his eyes for the camera. Because he's four. But he really is using his vision more consistently since getting these bad boys.

3. Collin is Still a Keto Kid
We got the results from Collin's most recent EEG and Dr. Awesome found that it was unchanged from 18 months ago: no seizures, but still abnormal enough to stay on the ketogenic diet until further notice.

4. Collin is Almost Toothless
It's a good thing Collin's incredible oral feeding progress hasn't moved past purees yet, because he doesn't have much to work with in the way of teeth these days. Last week, I found a super wiggly one and pulled it and sometime between then and the beginning of this week, he lost another one, which I never found despite lots of - ahem - *looking*. He is now down six teeth at four and a half years old. When I explained to him that he was not permitted to lose any more teeth before growing some, he misunderstood me and sprouted a six year molar.

5. Collin is Officially Obsessed With His Tricycle
He never wants to get off. Ever. I tried rigging something to keep his hands on the handlebars, and this is what he thought about my efforts:


There is a very slight incline in the parking lot outside our new apartment. He could easily use it to just coast down to the flat part. But instead he pushes as hard as he can to go as fast as he can. The bar Kyle is using here is to help us steer him from behind (we had a few near misses before we added that thing), but there is no pushing going on here.

Collin's Trike from Annie Kratzsch on Vimeo.

Those are the highlights, anyway. We have pumpkin patches and NACD and new gear and a family vacay to come.

Thursday, October 3, 2013

One Less Thing

For years, nap time has involved putting a nasal cannula on Collin and either turning on his oxygen concentrator or opening an oxygen tank if we were away from home. Because his central apnea was so severe, he needed that small stream of concentrated oxygen to signal to his brain to keep breathing and to keep his blood oxygen levels stable whenever he did stop breathing.

But back when Collin virtually stopped having apneas and desaturations at night, I started wondering whether he still really needed oxygen during his naps.

So, I devised an experiment.

For two days, using his pulse oximeter, we watched and recorded Collin's oxygen levels during his nap while he was using his nasal cannula like normal. This established a baseline. Then on the third day, we just removed the cannula and continued to record his levels, looking for any differences.

After nearly two weeks, we had seen him take both long and short naps and had seen no decrease in blood oxygen levels, so we concluded that Collin is now safe to take naps without oxygen therapy.

Voila! One small thing removed from Collin's daily needs!

We will still keep oxygen around for when Collin has a respiratory virus and as backup for his bipap machine, but at least we won't be lugging an oxygen tank with us every time he might be taking a nap somewhere else. Every little bit helps, especially when it points to a generally healthier and more robust Collin.