Blog

Collin's Room

We use a lot of equipment in this house. It could be even more, but we try to keep things as simple as possible without sacrificing functionality. Collin's bedroom is a good example of how we try to stick with the essential equipment and then choose accessible items from mainstream sources to fill in the gaps.

Any guesses on what Collin is into right now?

Any guesses on what Collin is into right now?

Note: I wanted to do this post a long time ago, but Collin wouldn't give me the okay until I finally took down the flowery wallpaper border and painted over the pastel pink that was there when we moved in.

1. Bed. We could have a special medical bed. It wouldn't be hard to get insurance to cover it. But we just don't feel a strong need for it right now. Collin isn't mobile enough to need to be contained in his bed and he helps enough that we don't need a bed that raises and lowers. So, it's a plain old twin bed for Collin. There is a collapsible bedrail under there that we use at both naps and overnight.

2. BiPAP. Nonnegotiable. Collin needs to be able to breathe at night. So we keep it there on his bedside table with the tubing running behind his bed and the mask waiting under his pillow.

3. Monitor. That white thing behind Collin's favorite dinosaur toy is a video monitor. Because Collin doesn't express himself with any words, we really need to be able to see him at all times to determine whether or not he's okay.

4. Closet storage. The closet is where we stash oxygen tanks, orthotics, extra medical supplies, backup g-tubes, and the oxygen concentrator. Oh, and clothes.

5. Tent. Collin got this tent for Christmas three years ago and it's been so great for him (many of our favorites over the years have been from B. Toys). Not only is it fun to play and read in, but Collin really appreciates alone time and this gives him a place to have it when he is overstimulated.

6. Open space. Between Collin's wheelchair, gait trainer, and stander, it's important that we have plenty of open floor space in every room, including his bedroom. He also needs to and enjoys spending time stretched out on the floor and he's super long now. It is good motivation to keep things somewhat tidy. That green chair folds up flat with one switch if we need more room.

This is what works for us. It has changed over time and probably will again, but for right now, this is our sweet spot between special equipment and run-of-the-mill kid stuff.

 

Good News Friday

Pardon the red nose. On top of BiPAP reasons, he sometime gets toasty in his classroom.

Pardon the red nose. On top of BiPAP reasons, he sometime gets toasty in his classroom.

- This week, Collin held a pencil by himself for the first time. And drew with it. And tried really hard to trace some H's. I literally cannot explain to you what a big deal this is, but here's the short version: he has sensory aversion to smooth, hard things; he has very little grasping strength; he has extremely limited motor skills (both gross and fine); he has very severely impaired vision. Not to mention the fact that we have never had any way of knowing whether he even understood the concept of letters. And yet here he is, sitting in a chair at a table, holding a pencil and intentionally using it. What the what. 

- Even though I take issue with some of the descriptive language, I mostly love this BBC article about a chimpanzee mother who was observed caring for her disabled child in the wild. Some of her judgments really resonated with me.

- I know most people have seen this video already, but I don't care. I'm a diehard Planet Earth fan. I really, really love David Attenborough. So this fun little experiment with Adele's new video was quite a treat.

- With so much news about dwindling numbers of various animals, you have to love the news that the monarch butterfly population may be quadrupling this year.

- Wow. This group of college kids has invented a way to prevent night terrors. And it works. And they did it in 36 hours. They're recent Kickstarter campaign ended up raising TWENTY TIMES their goal. Amazing. 

Friday Challenge: Stop what you're doing right now and spend five minutes doing something creative and pointless with your hands. Don't use technology. Doodle on a post-it. Brainstorm random ideas. Build something out of paper clips. I promise it's five minutes well spent. Then tell me what you did.

What We Don't Use

After writing about what a difference it has made for us to not need a carseat anymore, I started to think about other things we no longer use. It's amazing what eliminating even one thing can do for your day. Here are my top three unused items:

1. Pulse Oximeter. When we first got Collin's pulse oximeter, he was having dozens of apnea episodes throughout the night, even with BiPAP. Even with its many false alarms, the pulse ox allowed me to sleep because if it wasn't beeping, I knew Collin was safe. For the last couple of years, though, the only alarms we were getting were for loose or disconnected sensors. So what started as a necessity had become a nuisance. It was interrupting everyone's sleep with no benefit, so we took a deep breath and tried a night without it. Collin slept through the night. It was like very quiet magic. We still keep the pulse ox around for when he's sick (when it is SUPER helpful), but otherwise haven't used it since.

2. Growth Hormone. Long story short: Collin is growing like gangbusters even though his growth hormone dose hasn't increased in years. This leads the endocrinologist to believe that Collin's brain has learned to appropriately secrete its own growth hormone. So, we're taking a two month break from shots in the booty (*fist pump from Collin*), after which we will do blood work to decide whether we can stop for good. Fingers crossed.

Couldn't resist a throwback pic to the bandana era.

Couldn't resist a throwback pic to the bandana era.

3. Bibs. Don't get me wrong, at meals Collin still gets a napkin slung around his neck like he's bellying up to a stack of ribs. But he used to need a bib at all times. He had virtually no awareness of the front of his mouth and couldn't control his saliva. We used baby bibs for as long as possible and then switched over to bandanas when he got too grown up for those. Now, he has much better control most of the time, so we only keep a Norwex cloth handy just in case.

I remember long, long ago when I first realized that we could feed Collin at any rate we chose using a bolus syringe instead of a feeding pump. The feeling of walking out the door without that pump bag was electric. It's still a thrill to leave something in our dust -- the sweet taste of freedom.

 

This Rare Night

On nights when Collin is sick, I sleep with my glasses on.

I leave the screen of his video monitor lit, glowing blue over my pillow. He doesn't call out when he needs me. He doesn't make noise when he's distressed. Much relies on being able to open my eyes and, in a glance, assess the situation.

When he is congested, we use an oxygen tank instead of the BiPAP machine, and the change makes it hard for me to go to sleep. I am used to hearing every one of his pressurized breaths and seeing the dark straps of the mask, so the small shine of the nasal cannula and the low whir of white noise feel strange to me.

But on those nights, we use a pulse oximeter. Collin's sleep has improved so much that we don't use it on typical nights, but the monitor becomes a way for me to find sleep on the nights Collin isn't well. With alarms guarding safe upper and lower limits, its silence is an assurance. When the little red light on his finger probe flickers to life, it becomes possible for me to drift off, because if his breathing or heart rate are veering off course, the probe will tell the monitor and the monitor will tell me.

Invariably, however exhausted I am, the morning after a night like this has a special sweetness. Maybe it's feeling glad the night is over. Maybe it's being especially in tune with Collin's needs or the long hours of togetherness. But on those mornings, he looks even more like a miracle to me than usual.

Why Is Collin's Nose Red?

No, Collin isn't sick. He's not hot. He's not cold. But yes, he does have a red nose.

Collin uses a BiPAP machine while he sleeps to keep his breathing regular and deep. Why? Because he has central sleep apnea, in which his brain sometimes stops telling his body to breathe while he's sleeping. The mask he uses is very small and well-designed to make it as comfortable as possible and it only covers his nose.

The BiPAP machine works by using pressurized air to stimulate Collin's breathing. So, for 10-12 hours every night, his cute little nose is under pretty substantial pressure. The result? Happy, well rested boy. With a red nose.