12:00am Sign out from my volunteer shift and head home for the night. If it hadn't been a slow night, sign out would have been closer to 12:30-45. I call Josh from the car to let him know I'm headed home. At 10 'til 1, I get home. Josh is still half-awake in bed, waiting for me. I tell him he doesn't have to wait up, but he likes to. He comments on the fact that I'm home early and tells me KayTar has been coughing, that he had to go up and sit with her, hold her upright for a while to let her catch her breath. He says she was gagging a lot, but didn't vomit. I wash my face, brush my teeth, and pull on my pajamas. Then I go and fetch KayTar from her little bed and put her in mine. Josh and I pass each other in the living room and whisper our goodnights. He is bunking in BubTar's room again.
1:30am KayTar stirs, "Mom, are you there?" "Yes, I'm right here, baby, are you okay?" "Yes, I was just asking where you were." She coughs and coughs. "Do you need your Albuterol?" "No, I'm fine." "Can you take a big breath for me?" She does. She doesn't sound like she is working too hard, so I believe her. We toss and turn and drift to sleep around 2, perhaps.
5:45am Josh's alarm clock goes off. It takes me 10 minutes to register why he isn't turning it off, he is sleeping upstairs again. I get out of bed and turn it off, perturbed at being woken fifteen minutes early. When my alarm goes off at 6, I hit snooze once, just because I'm angry about waking earlier. Of course, I don't ever fall back asleep.
6:05am I get out of bed, stumble to the closet and grope for a pair of pajama pants in the dark. I walk to the kitchen and start the coffee, then I sit at my computer. At 6:30, I start calling up the stairs to wake Josh, it takes far too long and I resort to calling him by his full name. This works. BubTar wakes easily, as always, but it takes both of us to rouse KayTar today. Josh dresses her in the dark, then tube feeds her. She can't bear any light in the morning, none at all. BubTar dresses himself, I dress myself, and then I fix KayTar's breakfast, which she eats at school. Soon enough it is time for the hair fixing assembly line, followed by shoes, backpacks, and out the door. We're a little off schedule when we leave the house at 7:22, because KayTar needed a last minute dose of Albuterol.
7:50am Home from drop off. I pull on shorts and a tank top and head for the recumbent bike. The first 5 minutes are horrible, I continually bargain with myself over when I can stop. Once my heart rate speeds up, I feel better and make it a whole half-hour. Then I pop a bagel in the toaster and get in the shower. After my shower I put cream cheese on my bagel (strawberry, if you are curious) and sit down to eat it and write the first portion of this post. Then, of course, I check in on Twitter.
9:00am Time for school work. I have two chapters in my Composition II text to read. I alternate reading my text with checking in online periodically. It keeps me motivated. I have a second cup of coffee. I watch the PowerPoint lecture for the week and complete a quiz. I call the Texas HHSC to clarify our instructions on the kids' CHIP renewal paperwork. My estimated wait time is 4 minutes. The on hold music is ridiculously loud.
10:27am My cell phone alarm rings right after someone answers my call. Time to go get KayTar. I put on my shoes while I talk on the phone, quickly get my question answered and I'm out the door. In the car line, I read a book, Becoming a Doctor. KayTar is crying when I get her, she is cold. Outside. In Texas. At home I have to get her a hoodie immediately. She is a weird kid sometimes. She plays XBox and drinks Pediasure while I make more phone calls to her surgeon (about g-tube replacement), her ENT (about hearing tests), and a pediatric special needs dentist in our area. I have to leave messages at all three places. I watch the President's address and try to corral KayTar into watching it. She is not into it.
11:30am Try to talk KayTar into taking a nap with me, it is a no go. "But Mom, PLAYING is much more fun than NAPPING." Maybe for you, kid. I start a load of laundry and straighten up the living room. The ENT's office calls me back to get some information and tell me they will call again tomorrow. I finish sweeping and mopping, and remember to call the neuro-ophthalmolgist to see if they have received KayTar's medical records. I leave another message.
12:08pm Lunchtime for me, leftover spaghetti from my parents. Yummy. Play with KayTar for a good while and then read through her Brain Quest cards with her and realize that she needs a harder deck. Give her a popsicle (I have a theory that she has been self-medicating with popsicles, keeping her glucose up, which is why she hasn't had an episode, KNOCK ON WOOD), turn on Max and Ruby, and remember that laundry I started earlier. Better take care of that. I watch a little ER and fold laundry while KayTar watches the Fresh Beat Band and dances around.
2:32pm My cell phone alarm goes off, time to pick up BubTar. In the car, I read and listen to KayTar chatting with Isabella (EYE-sa-bella, her imaginary friend). BubTar had a great day, as always. He checked out his first books from the library, Dwarf Planets and Electricity. They made banners for their reading groups today, his banner/team name wasn't chosen (The Mushroom Martians, they really looked like mushroom aliens!), but he is proud of his work regardless. I like that he colored his banner red, seeing as the Mushroom Martians (or "Marsians" as he spelled it) were on Mars. We get home and it is snack and TV time for the kids and homework time for me, I have to finish a take home lab for Chemistry that I put off over the weekend. I fill out the calendar for Josh for the week, medications, activities, who needs baths when, that sort of thing.
4:00pm I play some Fusion Frenzy on the XBox with my favorite little guy, then I start getting ready for class. I tube feed KayTar.
5:10pm Josh gets home. We exchange notes on the kids. Give kisses and I'm out the door. Almost. KayTar calls me back because I forgot to give her a hug with her kiss. I swing by Taco Bell for dinner, a chicken quesadilla and diet Dr. Pepper. I eat while driving and finish up in the parking lot at school. I manage to read a couple pages of my book, too.
8:45pm My chem lab partner and I are the first group to finish our assignment and I head home, pleased that I stayed conscious through lecture. My teacher likes to read from the book and she only makes notes on the chalkboard occasionally. I don't learn well this way, I have to write to learn, to be in motion, so her lecture style creates a perfect environment to be overtaken by a nap. I have to stop by the grocery store on the way home, we're running low on some staple items.
9:30pm I get home, put away groceries and peel my clothes off, it is definitely time for pajamas. I pour myself a glass of wine and Josh and I settle in to watch Hell's Kitchen. After Hell's Kitchen, I watch a few episodes of Forensic Files in bed while Josh plays a computer game.
11:59pm I publish this post and tuck myself into bed. Goodnight!
What about you? What does a typical day look like at your house?