Lucas Camilo

It’s been a few days since we last blogged, but not for lack of material.  Rather, we’ve been busy keeping up with Lucas, training a new nurse, and getting to spend time with friends.

On Thursday one of Lucas’s major shipments arrived: the monthly re-supply of everything from gauze to suction catheters to bottles of saline to new circuits for his ventilator.  (If anyone in DC ever needs boxes for moving let us know because for now we’re thinking we could finance Lucas’s college education selling cardboard boxes at a nickle a piece.) Buried at the bottom of his med-supply delivery, though, was a play mat sent by his aunt and cousins in Seattle.

Although Lucas loves some fresh saline solution, the play mat with hanging toys took the cake. You can check out a quick video below of Lucas playing with his favorite of the animals on the mat, an elephant with rings that hang just an inch off the ground — the perfect height for him to grab and experiment with the distance from his extended arm to his mouth.  After the whole eye doctor episode a week ago, it’s been really exciting to see Lucas clearly identify something he wants to grab and work for it. Usually we help him wrap his fingers around toys, but more than once his hand fell off the rings and he figured out how to reach, lift his arm, open his fingers, get them through the rings, and then clamp down. We’re pretty sure this is evidence that he’s brilliant.

The play mat excitement has been dampened only slightly (but literally) by a few puke episodes over the last week. We’re not sure what’s going on, but we’re vigilantly taking his temperature and watching for any other signs that he’s getting sick.  So far everything else seems to be working well in Lucas’s system, and thus we’re crossing our fingers that the problem has been our enthusiasm for throwing a little extra milk in every feeding to help fatten him up.

Meanwhile, Lucas has a new nurse named Rugy. Although she doesn’t have a lot of experience working with kids who have trachs, she’s incredibly loving toward Lucas and she’s learning about his particular needs. It feels like a pretty big omission to have had nurses in our home 10-12 hours a day for the last 2 months but to not have written about them yet. The relationships with the nurses and the home-health agency are very complicated, though, so it’s hard to know where to start.  We’ll write more about them soon, but for now, we should say that it’s an amazing act of trust to leave Lucas with a near stranger, even if just to go to sleep, and we’re grateful that they work so hard to care for Lucas.

Finally, we’ve gotten to spend time this weekend with our friends Tom and Chris who are visiting from New York. Last night we went out to dinner with them and our friends/neighbors Sha and Matt, which was especially great because we’ve been thinking a lot about Sha (and telling Lucas about his family) over the weekend. Sha’s Mamaw passed away last week, and although we didn’t know her well, our lives have been richer from hearing Sha’s stories about his feisty, loving grandma.