Sunday, July 8, 2012
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!
Becca's Schedule - January 2012
I've been meaning to do this for a while, but I keep not doing it. I want to start writing down Becca's schedule every six months or so so that we can get a better feel for how her routine is changing over time. Maybe somebody else will find it useful as well. I kept forgetting to post this, so this schedule is from the beginning of the year.
5-6am: wake up.
Paula usually gets up, puts a toy in her bed and turns off her oxygen. She 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. We warm up a bowl of oatmeal, mix in a tablespoon of butter, and add whole milk to thin it down to about the consistency of yogurt. We sit her in her support chair at the table and feed her breakfast. She usually eats almost all of her oatmeal, and it usually takes her fifteen to twenty minutes. Every once in a while she won't eat well and only gets half of it down, sometimes less, before she starts coughing and trying to throw up -- that's our sign that she's done :-).
next: head off to school
A couple days a week Becca goes to preschool. The bus driver calls five minutes before she gets here so we can get Becca into her wheelchair and out to the curb. Then we help load her into the bus, they strap her wheelchair in, and she heads off to school. We always send her with a backpack with an extra diaper, an emergency pack for replacing her tube, and her school folder.We don't send her wheelchair tray to school with her because they try to keep her out of her chair while at school, so they never use it anyway.
next: come back from school
The bus drops Becca back off from school. She usually comes off pretty happy. She normally has some kind of craft in her backpack from school, and sometimes a note from her teacher. Her teacher uses email too, though, so that's how we usually communicate.
Right away we give Becca a little formula and (if we're feeling diligent) give her some time in her stander before naps. She watches a show while she naps, usually Signing Time.
12:30pm: lunch & nap
For lunch Becca has yogurt and either some cheddar cheese cubes or some more formula. If we give her cheese we cut it up into small pieces and squish them with our fingers before putting them into her mouth. If we're feeling diligent we'll push the cheese pieces onto her teeth and try to get her to bite down on it before rolling it with her tongue. Usually she holds the pieces against the roof of her mouth until they soften enough for her to squish them and swallow.
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'll play on the floor, we'll sit her up on the couch sometimes to watch a show, or try to get her more time in her stander.
6pm: dinner
For dinner we try as much as possible to give her whatever we're eating. We worry less about getting a specific amount of food into her, and more about getting her eating with us. For all Becca's meals we strap her support chair to a dining room chair and she sits at the table with us. For dinner we blend up whatever we're eating and add whole milk to thin it down. Sometimes our meals aren't Becca-able, so we keep some Chef Boyardee microwaveable tubs around in case. She's seemed a lot healthier since we've switched from mostly tubs for dinner to mostly our food for dinner.
Paula made a bunch of bibs for Becca, and she uses them for each meal. Becca always tries to yank them off, and she likes to put her hands to her mouth, so meals can sometimes be a messy occasion.
7:30pm: get ready for bed
Between dinner and bedtime we try to play with all our kids. We'll read books or play games or rough house, and Becca always likes being involved.
Around 7:30 we start getting ready for bed. Becca gets 2mg of melatonin via 2 pills in her mouth. She swallows them fine. Then we give her another dose of Trileptal and another 120cc of formula. After that we change the dressing on her feeding tube. We were told the tube would heal up on its own, but it still leaks a bit every day, and there's usually a little bit of granulation tissue somewhere around the edge of the hole. We have a bandage wrap and some gauze to hold the tube in place, but we think Becca still yanks on it all the time, which may be why it's not healing well.
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!
5-6am: wake up.
Paula usually gets up, puts a toy in her bed and turns off her oxygen. She 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. We warm up a bowl of oatmeal, mix in a tablespoon of butter, and add whole milk to thin it down to about the consistency of yogurt. We sit her in her support chair at the table and feed her breakfast. She usually eats almost all of her oatmeal, and it usually takes her fifteen to twenty minutes. Every once in a while she won't eat well and only gets half of it down, sometimes less, before she starts coughing and trying to throw up -- that's our sign that she's done :-).
next: head off to school
A couple days a week Becca goes to preschool. The bus driver calls five minutes before she gets here so we can get Becca into her wheelchair and out to the curb. Then we help load her into the bus, they strap her wheelchair in, and she heads off to school. We always send her with a backpack with an extra diaper, an emergency pack for replacing her tube, and her school folder.We don't send her wheelchair tray to school with her because they try to keep her out of her chair while at school, so they never use it anyway.
next: come back from school
The bus drops Becca back off from school. She usually comes off pretty happy. She normally has some kind of craft in her backpack from school, and sometimes a note from her teacher. Her teacher uses email too, though, so that's how we usually communicate.
Right away we give Becca a little formula and (if we're feeling diligent) give her some time in her stander before naps. She watches a show while she naps, usually Signing Time.
12:30pm: lunch & nap
For lunch Becca has yogurt and either some cheddar cheese cubes or some more formula. If we give her cheese we cut it up into small pieces and squish them with our fingers before putting them into her mouth. If we're feeling diligent we'll push the cheese pieces onto her teeth and try to get her to bite down on it before rolling it with her tongue. Usually she holds the pieces against the roof of her mouth until they soften enough for her to squish them and swallow.
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'll play on the floor, we'll sit her up on the couch sometimes to watch a show, or try to get her more time in her stander.
6pm: dinner
For dinner we try as much as possible to give her whatever we're eating. We worry less about getting a specific amount of food into her, and more about getting her eating with us. For all Becca's meals we strap her support chair to a dining room chair and she sits at the table with us. For dinner we blend up whatever we're eating and add whole milk to thin it down. Sometimes our meals aren't Becca-able, so we keep some Chef Boyardee microwaveable tubs around in case. She's seemed a lot healthier since we've switched from mostly tubs for dinner to mostly our food for dinner.
Paula made a bunch of bibs for Becca, and she uses them for each meal. Becca always tries to yank them off, and she likes to put her hands to her mouth, so meals can sometimes be a messy occasion.
7:30pm: get ready for bed
Between dinner and bedtime we try to play with all our kids. We'll read books or play games or rough house, and Becca always likes being involved.
Around 7:30 we start getting ready for bed. Becca gets 2mg of melatonin via 2 pills in her mouth. She swallows them fine. Then we give her another dose of Trileptal and another 120cc of formula. After that we change the dressing on her feeding tube. We were told the tube would heal up on its own, but it still leaks a bit every day, and there's usually a little bit of granulation tissue somewhere around the edge of the hole. We have a bandage wrap and some gauze to hold the tube in place, but we think Becca still yanks on it all the time, which may be why it's not healing well.
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!
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This blog is for and about our little girl, Becca. Becca was born with low muscle tone and has been consistently behind in her development. She's now six years old and doesn't walk or talk or feed herself. In 2010 Becca was diagnosed with Rett Syndrome, a neurological disorder caused by a genetic mutation.