Lucas Camilo

Although we haven’t made a big deal of Lucas’s snot on the blog recently, it’s actually been a big part of our daily lives. The sheer quantity of snot and saliva (aka “secretions”) over the past month has been hard — almost disheartening — because it has affected Lucas’s breathing, and thus his ability to sit up and be active. At first we thought it was a cold, then maybe allergies, then we started thinking that the increased secretions were here to stay.

But although they’ve waxed and waned before, the extra secretions seem to have finally leveled off over the weekend, and it’s made a big difference. Lucas can sit up longer, meaning we can go outside with him long enough to do things like grill and eat and enjoy warm summer-like evenings.   Also, for the first time in weeks he’s back to spending a few hours a day completely off the ventilator.

Yesterday Lucas did especially well, accomplishing some impressive personal feats. In the morning Lucas and Krista ventured out to the porch by themselves (meaning that Krista carried out Lucas along with his vent, portable suction machine, and monitor… all in one load). The feat would have been hard to imagine a couple weeks ago since excess secretions mean frequent and sometimes urgent suctioning during transport, impossible if you have Lucas and all his gear in your arms. But yesterday Lucas did great, and eventually fell asleep in his mom’s arms while rocking in the chair.

At noon his physical therapist arrived and Lucas was in a good, post-nap mood, playing along with the therapy, rolling his shoulder across his body to reach for toys, and straining to hold his head up without support to look up at his mobile.  After nearly an hour of work Lucas was lying on his back, and he suddenly noticed Evan move a tube overhead. With a burst of determination, Lucas reached not just his forearms, but also his elbows and upper arms off the bed and up into the air unassisted to grab at the tube — a big deal!

Lucas got another nap in before his speech and language therapist arrived. We hadn’t been able to use his Passy-Muir speaking valve in over a month, but today when Mindi turned off the vent and put on the valve Lucas thrived. He managed to breath out past his trach and exhale through his nose and mouth for 35 minutes, a near-record. While he bravely breathed on his own better than ever, he still managed to have energy left over to play with the therapist.

Finally, Burke came home early from work and all three of us got out for a stroll in the neighborhood.  Lucas was pooped, so he only got to see the rehearsal shots that his uncle Isham was filming (he’s making a TV show about energy that will feature our neighborhood, Mt. Pleasant) before Lucas fell asleep in the afternoon heat.

After dinner he was awake and active again.  Lucas got a hold on his favorite rattle and showed off his amazing ability to thumb suck and shake the rattle at the same time, though he got a little carried away…

(Perhaps he was excited about the imminent arrival of his grandparents, and the fact that today, Cinco de Mayo, is Michael’s birthday.  Happy birthday Papa!)