Lucas Camilo

Friends, it’s been a long time since we’ve posted to Lucas’s blog. Mostly that’s because we’ve gotten out of the habit, but also we’ve cut down our online sharing in general — none of us post much on Facebook anymore, and Lucas’s Twitter, Instagram and Tiktok accounts have gone quiet in recent months (LOL, he doesn’t actually do social media.)

But we figured the given the Covid-19 virus is ramping up, and that Lucas is part of the vulnerable population, AND that the Seattle are is the epicenter of the outbreak in the US… well, it’s probably time for an update. And since we expect that schools will soon shut down, it seems likely we’ll be spending more time around the house in the coming weeks, and looking for activities for Lucas in particular. So consider this post the end of a hiatus and the potential beginning of renewed period of family blogging.

The situation with the novel coronavirus is obviously very serious. I suspect everyone is reading the news, and if you’re in Washington state you’re probably following the daily updates from the King County health department, among other excellent resources out there about the spreading virus. Over the weekend our governor announced that the state may impose “mandatory measures”; right now local and state agencies are just recommending that large gatherings be cancelled, along with other things like having people telecommute instead of going into work. The University of Washington and other colleges in the area are moving to online classes. It seems like just a matter of time before Seattle Public Schools decide to cancel school.

But what does this mean for Lucas, a kid with a compromised respiratory system because of his underlying condition of myotubular myopathy? MTM causes low muscle tone and weakness, which in turn affects his ability to breather normally (thus the tracheostomy and ventilator). Certainly he is within the often referred to “vulnerable population” of people, mostly elderly, who are more severely affected by Covid-19. On the other hand, he has a few things going for him: he hardly ever touches other people or surfaces (other than his iPad) nor does he touch his face; he doesn’t breathe through his nose or mouth; and he doesn’t eat food through his mouth or swallow. Which means the most likely way he would become infected with coronavirus is through his caregivers — one of us, or his nurses. Oh yeah, and then there’s Ida.

Lucas and Ida do interact a lot these days and often it’s quite cute (that’s a subject for another blog!) She often gets down close to him or near his face when the play games together lying down on the couch. On Saturday morning she started sniffling and sneezing and we got worried and kept her away from Lucas to be safe. It must have been allergies or something because within a few hours she was totally fine. But it got us thinking… maybe we should keep her home from school this week?  She attends a small preschool and they are being hyper-vigilant about hand washing and sanitizing, doing their best to reduce germ sharing among preschoolers.  So for now she’s still going.

Meanwhile, last week Lucas happened to have a routine appointment with his pediatrician who gave the go-ahead for him to continue attending school, as did his pulmonologist at Seattle Children’s. We trust them both so it was reassuring. But the truth is there still are a lot of unknowns. Even in Washington state the chance of contracting the virus remains low but it’s sure to increase in the coming weeks. We worry a lot about all the people out there who are most vulnerable, including low-income people, homeless people, and other people with disabilities. We also worry about how racism and bias is already having huge effects on Asian people as well as Chinese-owned businesses. As I rode my bike through Seattle’s International District last week I noticed fewer and fewer people in restaurants and other establishments.

There is more than could be said but for right now we wanted to let you all know that we’re doing OK and also being extra cautious with Lucas. If you come visit our house you’ll find a large bottle of hand sanitizer on the table near Lucas — covered in pink duct tape and decorated to look like a unicorn (guess who was in charge of that?) — with strict instructions to use it before getting settled in.

And rather than going to our usual weekend places like the Aquarium or Science Center or a rock show (where lots of people gather in close proximity) we’re taking advantage of the nice weather to get out for walks. Yesterday we went to a park we hardly ever visit and sat down by the lake with beautiful clouds and snowy mountains off in the distance. Everything seemed normal and almost idyllic and I forgot for a moment that we’re in the early stages of a global pandemic…