This schedule is a couple months old, but I wanted to get it out there since it's all going to change a lot now that Becca is heading into first grade. This summer has been all over the place with sickness and summer school and family trips, so I wouldn't say it's been consistent enough to even call a schedule. I know that's been hard on Becca and I feel bad about it, so hopefully we'll get back into a routine for her soon.
4-6am: wake up.
Depending on the week Becca has been waking up earlier than she used to. We get up, slide her down off her pillow and give her a toy. She plays quietly until we get her up.
8am: get Becca out of bed and have breakfast
Becca has been having a tub of yogurt for breakfast. Depending on how well she at the night before she'll open her mouth pretty wide, and she usually eats the whole tub. The we give her her trileptal, two tubes of formula and some Miralax in water to make up the difference of what she should be having for breakfast.
School has been in the afternoon this year, so Becca's been getting into the habit of falling asleep not long after breakfast.
11:30am-12:00pm: get up from nap. lunch through a tube. get ready for school.
Becca gets four tubes of formula for lunch, and the rest of the Miralax from the morning. Then we get her dressed if she's not already, do her hair and put her shoes on.
12:30pm: head outside and wait for the bus.
Becca's new wheelchair is great (and it still fits in the van! hooray!), it's almost the same as the loaner from the school, but actually the right size. We keep it either in the living room or in the garage, then wheel it out to the front porch and carry Becca down the stairs to put her in. We keep talking about getting a ramp, but haven't done that yet.
4:30pm: arrive back home on the bus. standing time if she's up for it.
Depending on how Becca's feeling when she gets home (and how much else is going on at the house, unfortunately) we try to get Becca to have some standing time before dinner. She usually tolerates 30-40 minutes in her stander with a show on. Sometimes she'll get frustrated before then, but usually she's a good sport for standing time.
We also try to get another two tubes of formula into her long enough before dinner that it doesn't ruin her appetite.
I feel like we've made a lot of progress on the dinner front with Becca. Almost without exception now she eats whatever we're eating. We got a new chopper (and have learned a few tricks for better chopping) that lets us puree anything from pizza to quesadillas to chicken and rice to hungarian goulash. We use milk (or bread for soups) to get it to the consistency of thick pudding, and Becca will eat a healthy serving of most things. There are definitely some foods she likes better than others, but she's definitely the least picky eater of all our children :-).
7:30pm: get ready for bed.
Becca gets two melatonin pills by mouth every night (as long as we remind her to try not to choke she usually doesn't), a dose of trileptal and another four tubes of formula. We change Becca into a larger "sleep" diaper for the night because she's been leaking through more often lately in the night, then we say a family prayer and it's off to bed.
We put Becca in bed, brush her teeth, turn on her night light, sing her a song and turn on her blow-by oxygen to run in her tent. She usually falls asleep within five minutes of going to bed.
We've flipped Becca's bed around recently to try to help at least a little with her hips. She always ends up sleeping on the same side. Obviously this new side hasn't been her preference, so sometimes she gets herself in weird positions trying to get comfortable. She doesn't like laying on the side so she'll try to roll the other way and get all twisted, or try to roll onto her stomach and get two-thirds of the way there with her neck all arched back. Not sure if it's actually better or just bad in a different way :-/.
And that's it! A day in the life of Becca from two months ago. There was recently a bunch of people in a private Facebook community for Rett parents talking about their schedule that I think made both of us feel guilty that we don't fit more therapy in, but honestly I don't know where it would fit in our days anyway. One more thing to work on, I guess.