In looking back over recent posts, I’m thinking we should re-title this space: Liam goes to the park. We have been going more than usual lately, and it’s a relief to have some outside time in general and for pictures. Indoor winter light being so, well, dim and miserable.
But in reality we go only about once a week. Weekdays are taken up by work and household chores for me; doctors appointments or treatments or resting and doing house stuff for Will; and child care either with his grandparents or at “school” for Liam. Luckily between grandparents and school at least Liam gets outdoors pretty much every day. I’m a big believer in the importance of outdoor time, natural light, and unstructured exposure to nature (even if it’s just in the playground). And grandparent care is about the best type of child care anyone could hope for, so that’s all good. (Of course, I still dream every day of quitting my job or reducing my house by 50% so I can spend more time with him. As it is he generally spends more waking hours in a week with Will’s mother than with me, as he always has since I went back to work when he was 6 weeks old.)
I think I owe an update on Will’s progress. He had pulmonary clinic last Monday and continues to be stable. That’s sort of a double edged sword. It means that his lung functions are not improving (which is disappointing), but they also aren’t decreasing. He remains on 3 liters of oxygen, 24 hours a day. We have a concentrator and lots of tubing for the house; small tanks and an on-demand delivery valve for when he goes out. A big back-up air cylinder in the closet in case the electricity goes off. The doctors think a plan of alternating inhaled antibiotics (maybe with a few weeks off between switches if Will feels okay) will help to keep the infection colonies under control. He’s back on inhaled Colistin now (hateful stuff) and when he’s done with that (maybe another week) will start the new inhaled antibiotic that the CF community has been so waiting for. It’s inhaled azetreonam called Cayston. Not a cure, but a breakthrough nonetheless and welcome.
That's our news. My parents are visiting this week and have Liam during his grandparent days. Today, wonder of wonders, a big ship arrived just as the sun was going down and Liam got to watch it travel all the way into the harbor and to the pier. (Which can be seen from my parents house.) Liam loves big ships, which arrive every week or so to take on logs before departing to, I think, Japan. We can see them at the pier from the window in Liam's room upstairs and hear them clunking and clanging when we're out in the yard. Driving home tonight, we went a different way and pulled over to look at the lights of the ship and the tug boats from across the bay. So close it was like you could reach out to them, the ship lights getting brighter as the dark took hold. Then we went home and Will and Liam played What Do Whales Say When They Talk? and Can Right Whale Understand Orca Whale? (No, not really, in care you're wondering.) And that was the day.