Lucas Camilo

We celebrated solstice on Monday with Gramma Susan, enjoying the cozy darkness of winter while also cheering for the coming of more light as the days start to grow longer.  Our friend Hally gave Lucas a santa outfit, with a baby santa hat that we had to stretch out in order to slip over his big head.

The little guy seems to be celebrating the transition into this new season by doing some of his best breathing yet.  Overall, he’s had more days lately when he can go 3+ hours off the vent, and fewer moments when his trach gets clogged and we need to move quickly to remove the plug.  Yesterday was one of his best ever, though, with his oxygen saturation monitor riding at 100 % almost the entire day, even when we turned off the vent for long periods of time.  Another exciting development related to Lucas’s lungs is that he’s coughing more now, meaning he makes an effort to clear clogs in his airway and signal to us that he needs help.

Lucas also continues to look around and explore his surroundings more, which we captured in the mobile video a few days ago.  He still tracks objects slowly at times — and not at all when he doesn’t feel like it — but when he’s in the mood and in the right position, he’ll move not just his eyes but his whole head, if only slightly, to look at something interesting.

In other news, Lucas has been pooping lots lately (or having many “bm’s”, as his nurses say).  Over the course of the last two weeks he went from only pooping once every other day to soiling his diaper four times a day.  He may actually be having a small bout of diarrhea but seems perfectly happy in every other way.   Lucas uses cloth diapers with a cloth cover/protector, and he’s been pooping so much he’s maxed out his diaper cover supply (four) each day for the last week.  We never imagined we’d be so happy to have a washing machine!

Finally, Lucas has been smiling a lot recently.  He still has a low-muscle-tone smile, but it makes it all the more beautiful knowing has to work harder than most babies to flex his cheek muscles and show he’s happy.  They say that it takes more muscle tone and strength to smile then to frown, and since he’s been doing more of the former lately than the latter we imagine that he’s a pretty happy baby… which says a lot given all that he’s been through so far, and the fact that he still gets a plastic catheter shoved down his windpipe ten times a day.  It must be all the fun music he gets to listen to (we just got a batch of old-school children albums on vinyl); or maybe its all the soft, cuddly stuffed animals passed down from cousins, neighbors and friends; or maybe its the collection of flying critters on his mobiles; or perhaps its just the love…