Am I the only person who resolves every January to get control over the food budget and eating plan? Our situation is complicated by the fact that, like a lot of working parents, I really struggle to cook an actual meal in the 20-30 minutes I have in the evening before Liam completely loses it. I've already worked all day, and even though I like to cook it's not really "unwinding" to run around like a crazy person to try to get dinner on the table. Lately, I've been dealing with this in two ways.
First: I leave work at 4:30 and pick Liam up by 4:50 or so. I'm lucky, my schedule is usually pretty flexible so I can make up the 45 minutes or so working on email and whatever after Liam goes to bed. And, Liam has a snack when he gets home if he wants one. I know. A snack at 5:00 or 5:10. But, that's how it goes. It doesn't take much to keep him upright until dinner. Favorites so far are a small dish of plain yogurt (with honey), a little hummus and some partly steamed carrots, and part of a whole wheat tortilla with melted cheese and cilantro leaves. I try to avoid fruit and stick to things with protein. So far this has not stopped Liam from generally eating a pretty good dinner and it buys me some time to focus on getting something actually cooked, and (usually) the dishwasher unpacked.
Second: I've stopped trying to figure out everything we're going to eat a week ahead (which has never worked for me) and instead use categories of food to navigate the week. This is our current rotation.
Monday: cook something flat. Flat things cook fast. This is usually fish, or pounded chicken cutlets.
Tuesday: leftovers and broccoli. We try to eat broccoli twice a week, it's some kind of super food or whatever; plus everyone likes it.
Wednesday: vegetarian or whatever is hanging around needing to be cooked or looked good in the grocery store over the weekend. Wednesday is often a stir fry and rice.
Thursday: salmon. This works well because Liam goes to school on Thursday and his school is right by the big grocery store, so I can zip in and get the fish plus anything else we need for the rest of the week on my way to get him. If I don't get the fish, Thursday is often some kind of pasta.
Friday: pizza! Or something else really easy.
Saturday: cook's choice.
Sunday: something that will yield leftovers for Tuesday. We've had pot roast, roasted chicken, lasagna, and today a chicken pot pie.
I wrote the rotation on my chalkboard/magnet wall. (Thanks Auntie Chris and Mom for the help with painting.) Big fun: this week, you can eat along with us. Tomorrow is chicken, carrots and orzo.
I'm not sure exactly how this got started, but we ended up making the mini multi-colored cupcakes from last February's MS Living magazine today. Saturdays I try to do a kitchen project with Liam. Usually it's cookies, but today he asked for cupcakes and when I asked him what color frosting he said some version of: Yellow! No! Purple! No! Orange! No! Green! No! Yellow! Yellow! Purple! So, it sort of snowballed from there. Liam is, well, let's just say very interested in frosted cupcakes, especially the frosting. (Yes, I think that is a fingerprint in one of the purple cupcakes; we're working hard on "Look with your eyes only!" but have a way to go.)
I thought we might use this project to help Liam learn more about mixing colors. He knows all his colors well, but doesn't know much about mixing them. Turns out, neither do I. I mixed blue with orange expecting to get some kind of green and ended up instead with some kind of brown. Not nice. Will was called to color consult after that, and we went forward without further surprises.
They are dangerously tiny and delicious, these little frosted cupcakes. I guess tomorrow we probably better pack some up and bring them to the neighbors.
Apple slices with almond butter are Liam's new favorite snack. Evening story time generally consists of apple slices, almond butter, and a big glass of milk. I'm watching them read together now, snuggled up in the chair. Liam prefers to just eat the apple slices and then scoop the almond butter out of the dish with his fingers. He very much wants to be sure to get all of the almond butter. Liam started his antibiotics yesterday, but still isn't noticeably better in the cough department. I got a phone message from the pediatrician today, something about check back, but I accidentally deleted it when I was trying to save it so. . .I'll have to call them tomorrow. Darn.
Pulmonary clinic all day with Will today. And, next week it will be infectious disease clinic (because of Will's immune suppression, he's followed by ID) and oncology follow up. The most exciting thing for the doctors today was that Will's INR was 7.1 and then, in the re-draw/re-test, 7.7. They want it to be below 3, so this gets their attention. Since Will was tentatively scheduled to go off blood-thinning therapy in about a week, the docs talked with one another and decided to just stop it today. And gave vitamin K to reverse the blood-thinning effects. Figuring all this out involved an unscheduled visit to the anticoagulation clinic, a repeat blood-draw, and two phone calls as we were driving back home. So, good-bye, finally, follow-up from the great picc line clot drama of 2009. Will is happy to see you go.
The most concerning things are that Will's lung functions continue to be down and his white blood cell count seems to be going up. The lung function thing may have to do with his inhaled antibiotic, at least in part, but it probably also is a result of more permanent damage from bronchiolitis obliterans syndrome and/or all the infectious complications Will has suffered over the past year or so. The white blood cell count thing has no obvious explanation. It will be something the oncologist probably will want to consider next week. In the meantime, Will is to go off his inhaled antibiotic basically to see what happens. This is welcome (it is Colistin, a crappy, unpleasant therapy), but also scary, since it seems to have kept Will out of the hospital for the past 2 months. We are to watch closely and call at any sign of problems. Will coughed up a sputem sample that they'll send for analysis, which is good, because if he does start to have another infection exacerbation the docs have some relatively current informaiton about what the infectious agent might be and what antibotics (if any) it is sensitive too.
That's all. It's a long day, but it was nice to get to spend it with Will.
Monday: power outage for16 hours. It started sometime Sunday night. For some reason the alarm on Will's oxygen concentrator didn't go off. It's supposed to alarm (it is God-awful-loud) when it loses power because, well, you know, it can't deliver oxygen anymore and it needs to notify someone to DO SOMETHING. Well. It didn't. I woke up around 2:30 AM to Liam crying "it's too dark; it's too dark" and was snapped out of my stupor when I realized what had happened. Tear ass downstairs to switch to the big back up tank. Do this first. Then check on Will. He is fine. He had woken up and hooked up the small tank I put in his room in case the power ever were to go out while I was at work. Jeeze. I don't really need that much adrenaline at 2:30 AM. It also took forever to calm Liam down. By Monday at 4:00 PM we finally packed up the dinner we had planned to cook at our house and took it to Will's parents house to cook there. I remember the guacamole and forget the chips. Really. I drive to the store. Again.
Tuesday: I was still grumpy from the power outage. Really. Couldn't. Quite. Shake. Grumpy. Liam has a fever (this actually started Monday night), runny nose, and is developing a head-turning cough. He is grumpy too. We are grumpy together and with each other. No one is sleeping well. Work is full of drama that I could do without.
Wednesday: Liam is sick. Will is getting sick (sore throat). I have to drive 300 plus miles east of the mountains for work. Luckily there is no snow. I am the biggest cry-baby about driving in the snow. It is embarrassing. Will's father is traveling and so am I, so there is no obvious person to drive Will to the hospital in case he gets sicker and has to go. It is good to have extra things to worry about.
Thursday: Killer-long day of work with a group that takes a lot out of me. Then, the drive home. Beautiful, beautiful, beautiful in the mountains. I start to think I might calm down some and salvage this week after all. Will doesn't get a fever and decides he has a little cold but really doesn't feel much worse than usual. Okay. Liam develops a cough that sounds like he is a seal with TB. But, we think his fever is gone and he'll be able to go to school on Friday.
Friday: Liam has a fever and so can't go to school. He goes to Will's mother (again, she is a saint). I work. In-between trying to get just one thing done I have to have 3 separate phone calls with the oxygen delivery people. Why this is so hard to arrange I will never understand. The delivery truck finally arrives just as I am running out the door to get to a call with clients. The O2 man wants to discuss things. I about lose it. Then, I drop my laptop face down, like a pancake on the kitchen floor and destroy the screen. (Data, thank God, turns out to be fine.) I leave the O2 man to figure things out on his own. I call the office and explain to the person I work on this project with that I need the call-in number because I can't see my calendar anymore because my laptop is destroyed. I call our computer person and explain it to her. Everyone is nice. Then, I drive up to the city to attend our yearly post-holiday-work-open-house-party-thing because, you know, it is what must be done. And I have to pick up my new laptop anyway. Will's mother keeps Liam.
Today: we sleep in a little. It is sunny (thank God). We do Liam's favorite outside chores: pick up dog poop ("There's poop right there Mommy. Right there. Right. There.") and fill the bird feeders. Red winged blackbird in the yard today along with the usual assortment or sparrows, chickadees, and the hummingbirds. I take Liam to the doctor and am told that his lungs are clear (thank God again), and he might have a sinus-type infection, and antibiotics are probably a good idea, but don't worry. Liam is so well-behaved at the doctor’s office it is a thing to behold. After the doctor listens to his lungs, Liam says "thank you."
So, we’re on an upswing. I am amazingly behind at work and will have to figure out what to do about that. Will has pulmonary clinic on Monday, so that will be another day mostly off to drive him there and go to the appointments. We’ll figure it out. The days are longer now. We gain a little bit of light, just a little, every day and it is enough to notice it now.
As I came over the mountains east to west on Thursday night I chased the setting sun. It would duck and drop behind the ridges, but then I would come up around a corner and the horizon would open up just a little and there would be the light again, sky pale yellow-green-blue moving up to deeper blue, pale gray clouds reflecting the somewhere sunset with a pink-orange fringe. I followed it all the way over Blewett Pass, down Snoqualmie, and it wasn’t until I was over Tiger Mountain and back into the city that it got well and truly dark. Tonight we had alpenglow on Mount Rainier bright enough that Will called it out for me to look at.
As usual, I have no idea what exactly Liam was playing when he set all these animals up inside the circle of train cars. He plays with the little animals continuously; lining them up, moving them around. He puts them through various situations, they talk with one another and re-enact things that have happened throughout the day. (For example: cows that dig big holes in the dirt have to be taken out for a bath, exactly like Mollie the dog, who was taken for a bath yesterday.) They go in and out of the barn. In and out of the parking garage. We love the little animals around here, that’s for sure.
My sister made the train for Liam. Let’s be sure that’s clear: she made it. All of it. By hand. Out of wood. It’s amazing. Liam likes all his cars and trains, but he comes back to this one over and over.
Today was: feeding the birds, walking the dog, playing inside, making cookies for the neighborhood after Christmas party, going to the party, getting completely hosed in the white elephant exchange, explaining to Liam that, unfortunately, there were no actual elephants involved, carrying a screaming Liam home (too much, too tired), taking almost 90 minutes to calm him down and rock him to sleep, and discovering that even in such a situation where a glass of wine is basically mandatory, it's true, I really don't like Vin Santo enough to finish even half a glass. It doesn't matter how cold it is or that it's the only thing open in the house. Sigh.
Liam was so good at opening presents at the white elephant exchange we felt the need to explain, at least twice, that he is an only (local) grandchild. This seemed to satisfy people.
Liam likes music. He is a great singer of songs and he likes to dance too. A month or so ago, we all got these little music players, which he can basically operate on his own. We've decided on no TV after dinner (and not much before, either), so in the evenings we mostly listen to music. He has very definite likes and dislikes and does not hesitate to skip the songes he doesn't want to hear.
Lately, the soundtrack has been this. It is a great pleasure to me that Liam turns out to be a kid who likes Pete Seeger. As if he has a choice around this house.
We've been having pretty quiet days. Back to work for me. Back to "school" for Liam. Will is pretty stable at home, still on oxygen continuously, still taking inhaled antibiotics. (Colistin, for any CF readers. It sucks. But, so far, it keeps him out of the hospital.) Rain, rain, rain outside. Warm rain, like a very dark and grim version of March. (Which tends to be pretty grim around here anyway.)
Liam has been spending his time reading with Will and painting, painting painting.
