Living With It

The nurse for the second surgeon was kind and motherly. When I balked at the impossibility of our situation, she advised us to make the best decision we could with the information we had and then not look back.

Which is much easier said than done.

The most common question I've been asked since deciding not to do this hip surgery for Collin is: Are you relieved?

Yes, I'm relieved to have the decision behind us. I'm relieved that he will not have to endure the surgery. But we also went into this knowing that there were substantial risks either way and that with either route, we were choosing the set of risks we could live with. And that's exactly what we have to do with this decision: live with it.

Because the answer is also no: I'm not relieved. Every time Collin seems to be uncomfortable and I don't know why. Every time his right foot rolls worse than normal or his legs scissor while he's in the gait trainer. Every time the thought sneaks up on me. I worry that we made the wrong decision.

Of course, I would be second guessing our choice even if we had gone the other route. So the crucial part of living with this decision is using my doubts as an opportunity to remind myself. I remind myself not only of why we made the choice we made, but also of the things we were reminded of in making that decision: our big picture, our approach to Collin's childhood, the pattern we have laid out for ourselves with all of the decisions we've already made and lived with.

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

In honor of Collin's new love for the gait trainer, this week's good news is all about gear that allows people to go places and do things they couldn't before.

The HexHog is an all-terrain wheelchair that can offroad pretty much anywhere. And it looks wicked cool. 

How about an ice glider that allows people who use wheelchairs to ice skate?

I found both of these cool inventions through UD GoBabyGo, a program at the University of Delaware that adapts ride-on cars for kids with various kinds and degrees of disability.

I've been following Caroline's Cart for years and petitioning my local grocery stores for just as long to carry these simple and empowering inventions. (No luck so far.) So, I was thrilled this week to learn that, starting in March, almost all Targets will have at least one Caroline's Cart available for use. Just the thought makes me tear up. I can't tell you how hard it is to go shopping with Collin and how many times I've had to make arrangements to go without him because I needed more than will fit in a small basket. Bravo, Target.

Finally, maybe the best things about these inventions are that they were dreamed up by kids. A British inventor asked almost 500 kids to submit ideas, then took their drawings and, together with local manufacturers, made them a reality. I love the thoughtfulness and imagination. Be sure to check out the Phone Friend, which makes phone booths accessible to individuals who use wheelchairs.

What enabling gear do you know of that I missed here?

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.


Sweet Ride

I've never been into cars. I don't even remember what kind of vehicles other people drive, much less feel impressed by them.

But I'm kind of in love with this one.

If it looks like light is shining down from heaven, that's because it is.

If it looks like light is shining down from heaven, that's because it is.

Collin is a huge fan of the ramp van.

Collin is a huge fan of the ramp van.

As with the wheelchair, we had to wait until we were mentally and emotionally ready for a ramp van. However, the physical component sped up the process when my joints started falling apart from lifting Collin in and out of our old van. 

So, we applied for a grant to cover the conversion (and got it!) and waited for the perfect used-but-new-to-us van to come along.

OK, Mama, can I get out now?

OK, Mama, can I get out now?

It's a game changer. I can get Collin and his wheelchair in the van and ready to go in about one minute. With no lifting. That means several things: much less wear and tear on my body, more chances to have outings just the two of us, and access to more places in the community.

Plus, not many kids get a new car for their first day of first grade. How's that for impressive?