Cystic Fibrosis · Life · Parenting

Big Things Happ’nin

I may have mentioned, once or twice or sixty times, that I’m a nervous wreck leading up to Levi’s annual appointments at the CF clinic. This feels ridiculous, because we almost never get bad news. But it feels significant, like something very bad could happen. And his whole team would be there to tell us about the bad thing.

I’m aware that this is a negative perspective. Sometimes I spend time beating myself up for this, but I’m trying to stop that. It’s not unique to me. Every parent I know who has a kid with a disability or a chronic illness is prey to this at least some of the time. It’s very easy to believe that something bad could happen when something bad already has.

Levi’s appointment earlier this month, though, went well. Good news was everywhere. His lung function was up from his previous appointment, his weight was fine, everyone was happy with him.

And Levi was happy, because all his hard work trying to grow a couple of inches had paid off. For the last six months, since his spring appointment (“Mom! Did you know kids grow faster in the springtime? I read it in a book!”) he has been working on getting taller. He had to eat certain things so he could grow. He needed to get enough sleep so he could grow. I would not be surprised to learn that he told his teachers he needed to sit at a certain desk so he could grow.

He’s already up to my shoulder, the child who used to cling to my leg, his face just at my knee. No one ever tells you that babies grow up to wipe snot on your pant legs. At least no one ever told me.

He’s at my shoulder, and uses Kleenex now. Mostly. So why the hurry?

The new vest was the hurry. The new vest, with no tubes, and a battery. A vest you can walk around in, and wear while you shoot hoops with your brother, instead of being tied to the couch, near a power outlet, for at least an hour a day.

He tried on the new vest at the spring appointment, but <sad horns> he wasn’t tall enough.

This time? He was.

On the way home, I tried to prepare him for the inevitable delays as everything processed through insurance. “Remember,” I said, “this may take a long time. I’m so excited you’re tall enough, but you can’t expect the new vest next week. Maybe not even in a month.”

I wasn’t trying to ruin his fun, but I’ve been on this ride before. Red tape takes time.

What do I know, anyway? I got a call the next day from the company that makes the vest. They were working with insurance and would call me soon. Ten days after his appointment, Susie the Intrepid Respiratory Therapist was out at our house, showing him how everything worked.

The next day, he was running around outside during his treatment time.

Not all the news is good. The insurance company has approved the vest for a thirty-day trial. We can’t guarantee that he’ll get to keep it. Probably he will get to keep it, and certainly he will have people on his side fighting for that, but please do cross your fingers and toes for him.

The worst news is something Levi discovered just a couple of days after receiving the vest. His newfound mobility means that there is no reason remaining that he can’t take out the trash for mom when she asks.

Seriously, though, I am not exaggerating when I say this has the potential to be life-changing. We are used to planning our lives around treatment times, and that won’t go away entirely, but wow, does this give us more options. Instead of being stuck and picking fights with his brother who won’t get him the book he wants from across the room, he can … do just about anything. Including going somewhere in the car.


If that weren’t enough, today brings a new medicine. It’s a gene modulator, fairly new to the market. (Levi checked to make sure it was FDA-approved, and I wasn’t sure whether to be proud or dismayed that he knew to ask.)

The best way I know how to explain what “gene modulator” means is that the medicine, instead of treating the symptoms of CF, is meant to fix the defect in the gene that causes CF. To make the cells in Levi’s body behave as if he did not have the disease.

The fact that medicine like this exists frankly makes it seem like we are living in a science fiction novel. I don’t understand how it works. Happily, I don’t need to. I just need to make sure he takes it.

Probably nothing will visibly change when he starts this medication. But it sure feels big.

I guess we’ll see.

3 thoughts on “Big Things Happ’nin

  1. So much awesome news here and keeping my fingers crossed on being able to keep the vest. Keep us posted. Take a big hug too.

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