Becca's Schedule - July 2012

5-6am: wake up.
Paula usually gets up, puts a toy in her bed and turns off her oxygen. Becca usually plays pretty quietly by herself for a few hours.

8am: get Becca out of bed & have breakfast
We carry Becca into the living room and lay her on the floor or the couch. We change her diaper and give her her morning dose of Trileptal (anti-seizure medication) along with a cupful of water mixed with Miralax through her feeding tube.

Then we give her breakfast. Becca was having a hard time with the oatmeal, so we've recently changed to just yogurt in the morning. She's all smiles while eating her yogurt, and she goes through it in probably ten to fifteen minutes.

next: morning therapy
We've hired a teenage boy in the neighborhood to do some physical therapy with Becca a few times a week. Basically this consists of stretching her limbs, some time sitting up, time on her stomach, and time in her stander. We started doing this at 10:00am, but she was falling asleep about then so we tried moving it to the afternoon for a bit, but now we're going to try a little earlier in the morning.

next: formula and a show
Becca usually gets a little more formula in the morning before lunchtime. By the way, when I say "formula" I'm talking about this stuff. Becca sometimes gets upset in the late mornings, and shows definitely help. Even when she's not upset it's a nice change of pace for her. Becca's favorite show right now is Mickey Mouse Clubhouse. We also discovered recently that she really likes the movie Wall-E.

12:30pm: lunch & nap
For lunch Becca has just under half a can of Spaghettios and some more formula.  Sometimes we blend up the Spaghettios, sometimes we don't, just depending on what she seems able to handle. We'll also sometimes switch the formula for some squished cheese cubes.

After lunch Becca goes down for a nap. We make sure to change her diaper before naps or it'll be too full by the time she wakes up. We put her in her bed and turn on her blow-by oxygen (she has a PVC frame with sheets on top that serves as an oxygen tent).

3:30-4pm: wake up from nap
Becca usually wakes up in a good mood. If we go in and it looks like she barely woke up we give her some time, because she seems to do better if she has a bit to wake up before we get her out of bed. She usually needs a diaper change, and then we carry her back to the living room. She plays on the floor with some of her electronic toys. She really likes to watch her sister and brother play on the floor. Especially Christopher, he's crawling around a lot more now, and she seems very entertained by him.

6pm: dinner
For dinner we try as much as possible to give her whatever we're eating. She's been doing well with eating the same as us whenever possible. We keep some tubs of ravioli or mac & cheese in case we're eating something like sandwiches that don't blend well, but for the most part she eats with us. We've had to be careful lately to keep her feeding chair tight on her shoulders, or she ends up tipping her head back and choking and sometimes throwing up her food.

7:00pm: get ready for bed
After dinner and some hanging out, we start Becca's routine. We've been trying to give her melatonin and formula a little earlier in the morning because she's been throwing up in the night sometimes. It seems to be helping.

Becca's feeding tube has been good for the past little while, so we haven't needed to change the dressings anymore. She's also been pulling at the tube less which has helped as well. We haven't needed to wrap the tube or anything for at least a few months, which has been nice. We still clean out around the tube probably twice a week, but that's a lot less than before.

8pm: bedtime
After that it's family prayer and bedtime. We put Becca in her bed, brush her teeth, sing her a song, tuck her in and she goes to bed. We turn on her blow-by oxygen through the night and when she first goes to bed we lift a corner of her oxygen tent so she can see the snail night light/lamp Paula's uncle got Becca for Christmas a few years ago. Once she falls asleep we turn off the light and close the tent flap because if she does wake up in the night she'll be more likely to go back to sleep.

That's about it!