Sometimes, on a Monday morning, our nanny will ask me whether it's going to be a "regular" week. Over the past few months, I've come to the conclusion that whether or not a week is regular is something that can only be assessed in retrospect. And, I am delighted to report that the past week has been a regular week. After so many irregular weeks in a row, having one regular week has felt like a vacation.
We kick off every morning with Pulmozyme. Lemon's current favorite video to watch while doing this treatment is an animated film about a garbage truck who goes around the city collecting trash from dumpsters. It begins with an overly hearty narrator saying, "Good morning, city. The time is 5:30 a.m." I really feel that I do not need to be reminded of this fact on a daily basis. But, Lemon finds the video so transfixing that he sits as still as a statue during his treatment, so I feel that it is medically justified. Then we move on to our first round of PT, with videos on diverse subjects including construction vehicles and trains. After PT, we do breakfast, which begins with enzymes always features a high calorie shake, 2mL of special CF multivitamins, 1mL of extra vitamin D, 1.4mL of ranitidine, 2.5mL of cetirizine, and a probiotic. Then Papa Bear and I head off for work, and Lemon has all sorts of fun with the nanny and Nona until I get home.
We've added a really fun ritual to the end of our day, where Lemon and I sit on some folding chairs at the end of our driveway, eat popsicles, blow bubbles, and remark on the steady stream of vehicles that drive past our house. They come in a variety of models and colors, as it turns out. Sometimes, they come in groups and can be counted. Periodically, something truly spectacular like a tractor trailer goes by. Eventually, Papa Bear appears either by bus or by bicycle, indicating that it is time to go inside to watch more videos, do another round of PT, and eat dinner accompanied by enzymes (of course), 1mL of iron, 2mL of vitamin D, a dose of glutathione, and 1.4mL of ranitidine. Then there's nothing left but a bath, books, and bed. This week, we also completed a feeding study with Lemon. He's been in an observational study since he was born, looking at the effects of diet on outcomes in kids with CF. Periodically, we have to record every single thing he eats for 72 hours, and we took advantage of the long weekend to get that done. So, when you read the published study some day, just remember, this is how they knew how many miniature Goldfish crackers he ate!
