Monday, February 20, 2017

Week 183: Half way there

And, just like that, we are half-way through the 1/3 year. Lemon passed the half-way mark yesterday, and I feel like since we started Cayston and have CF at least vaguely under control, Lemon has actually had the chance to just be 3 and really figure out how to be a kid. Since we've started our current round of Cayston, he's managed to gain back 2 of the 2.8 pounds that he lost when he got sick again, which is amazing. It's clear from his activity level and feisty-ness that he's got lots of energy again, and he's plowing some of that energy into some big cognitive leaps.

I'm seeing this mostly with his social development. Up until now, Lemon mostly cared about himself, the main grown-ups in his life, his brother, and the cat. Other kids were at more or less the same level of interest as the cat--they moved around and made noise, which was interesting, but that was about as far as it went. Now, all of a sudden, he's figured out how much fun it is to play WITH other kids. On Saturday afternoon, it was freakishly warm, and I tried to convince Lemon to go on a special mother-son walk with me where he could ride his balance bike. I got a whole lot of nope until I suggested that we could go meet one of his little friends who lives down the street. Once he knew she was coming, too, he couldn't get his helmet on fast enough.

Lime is clearly moving from being 1 towards being 2. He definitely says fewer words than Lemon did at the same age, but his comprehension of spoken language, gesture, and facial expression amazes me every day. Lemon understood a lot of words at this age too--but mostly just the words about the things that interested him the most (truck, steam roller, helicopter, fire engine--the important stuff). Lime seems to know the word for just about every object or action he's ever seen. We FaceTimed with Uncle Jared this weekend on my phone, so Uncle Jared's face was about the size of a postage stamp. Lime was captivated anyhow, and Uncle Jared kept pointing to different non-nose parts of his face and asking Lime "Is this my nose?" Every time, Lime shook his head, until Uncle Jared finally pointed at the nose, at which point Lime nodded vigorously. And we're talking about a few pixels representing a guy that Lime probably barely remembers seeing in person. Crazy, I tell you.

It's felt like such a gift to have a "regular week" again, although the price for this regular week is doing 3 treatments a day, day in and day out. Anything is better than being in the hospital, but even after just 10 days we're getting pretty sick of it, and it seems like the rate at which the little vials of Cayston disappear from the box in our refrigerator just isn't fast enough. Part of me is tempted to explore whether we could possibly do a 14-day course of this (analogous to a 14-day course of oral antibiotics) instead of 28 days. After all, we're using it off-label so who knows what the right length is for Lemon? I'm not going to try it this time, because I just want to make sure Lemon clears this thing and gets to spring without further incidents. But, I'll bring it up at our next clinic visit and see what kind of response I get. It's hard to believe, but we've been without a pulmonologist for a year now. We've made it this far, but I am really ready to have someone steering the ship again!

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