Monday, May 8, 2017

Week 194: Plane home you

I'm glad to report that I left the state for two nights and everyone survived to tell the tale. It makes me think I should go away more often, but only if it involves something other than a professionally mediated conversation with my coworkers about our respective personalities (don't ask). In any event, I definitely enjoyed the trip and the feeling of freedom that came with being responsible only for myself for a couple of days. It seemed like the males of the family were glad to have me back, though. In fact, Lime came the closest he ever has to uttering a sentence. When I came into his room the morning after I got back (I'd arrived after he was already asleep), I pulled him out of his crib and as we were sitting in the still-dark living room, he said "Plane. Home. You!" which does capture the scenario pretty accurately.

Papa Bear and I also enjoyed a little kid-free time together this weekend, taking part in our annual Great Strides walk. Thanks so much to all of you who donated--we ended up being the #4 team at our walk this year, which is a nice accomplishment, although as I say every year, _next_ year will be the year that I actually get serious about fund raising. Some day I will have more free time, right? I think I've been saying that about every year since I was a sophomore in college. But I continue to be optimistic.










In case we needed a further reminder that May is CF awareness month, today we decided to bite the bullet and start another course of Cayston. Lemon is still really well, which is the puzzle of this cold. He's not coughing much if at all at night, and he doesn't have a runny nose or sneezing either. But there's this lingering cough. Not too frequent, maybe a couple of times a day, but it's a productive cough and it's certainly not his baseline. And we seem to be kind of stuck there, despite our best efforts with increasing his treatment to 3 times per day. So, I reached out to his nurse practitioner today, and she agreed that it sounded like time to start up the Cayston again. Hopefully since he's not that sick, we'll be able to get away with just 14 days this time.

We did have one little advance, though, which I'm excited about. When I was unpacking a set of new nebulizer cups (they need to be replaced every 6 months or so), Lemon started asking me about the mouthpiece that came in the package. I explained to him that that was what grownups used to do their treatments, instead of the mask, and that got the idea in his head that he wanted to do it that way, too. The Cayston provides a great avenue to learn how to do the mouthpiece, since the treatment time is so short. So, when the time came to do the first Cayston treatment today, I gave Lemon the nebulizer with the mouthpiece attached and he pretty much ran with it. I feel like he gets a lot more of the medication into his lungs that way, since there isn't all the leakage like there is around the edges of the mask. It certainly says something about your perspective as a parent when you're remarking to yourself "Oh, he's growing up so fast" because he's able to do his nebulizer treatments like a grown up.

But, in more typical and exciting parenting news, look who got his first real two-wheeler bicycle!




1 comment:

  1. It can feel strange when cf kids have different kinds of milestones - makes one mindful of the challenges and differences of your life. Congratulations on the new bike too!

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