Becca's had a hard six months. Something happened over the summer that changed things in a way we haven't been able to figure out. She chokes and coughs more, and has a harder time getting clear. At first we thought she had a cold, but it wasn't like her other colds because she didn't get really bad and she could still interact with us (when she gets really bad her body is so worked up that she can't even seem to answer yes/no questions with her eyes successfully, she just breathes heavy junky breaths over and over until she gets better). We thought maybe it was allergies or something, but it didn't go away.
We've met with the pulmonologist, talked to GI and a couple other doctors but nobody had a good answer. We thought maybe it was due to her scoliosis but the ortho doc did X-rays and said it's not bad enough for that to be causing it yet. We had a percussion vest already because Becca was diagnosed with bronchiectasis (basically a widening of the airways that results in more mucous and easier infection) earlier in the year (she was sick and we were hoping to get a vest to help her out the person reading the x-rays may have known the answer we were looking for and helps us out a bit, we're not completely sure), so they told us to start doing that twice a day and also give her albuterol twice a day. We'd done some nebulizer stuff before, but that took about 5 minutes each time, so the inhaler route sounded a lot easier. I'll post more about that if I remember to.
Anyway, here's the schedule:
4-5am: Wake up. Paula gets up with Becca and does her inhaler and percussion vest for 12 minutes. Originally we were doing this at 7am, but it seemed to be making it even harder for her to not choke on her breakfast so we moved it earlier. Now she sits in her chair afterward and listens to music, listens to an audiobook, or watches her fish tank. If she gets really junky and coughs a lot we put her back in bed so she can clear up a bit.
7am: Siblings get up. They're allowed to get up at 7 and they go hang out in Becca's room until it's time to get up for breakfast.
7:30am: Brian gets up with Becca and gives her breakfast. We ask if she's feeling up to eating by mouth and if not we just do formula and medicine. If she's up to it she picks a flavor of yogurt and I scoop out like three or four spoonfuls into a bowl and mix in some finely-chopped oatmeal to make it a little thicker. On a good day she'll get six bites before she starts coughing too much. She chokes a little on about half the bites, but we try to let her decide when she's done. We have a fan next to her now because when she gets coughing on her bites she gets really sweaty.
8am: Medicine, formula (compensating for how much or little she eats) and miralax in water.
8:30am: School? About half the time Becca is up to going to school. The rest of the time she's got too junky a cough or is too worked up to ride safely on the bus. If that's the case we get her out and let her lay on her side to try to calm down or get more clear. Sometimes she feels up to letting Paula drive her to school, sometimes not. If she stays home she usually falls asleep and sleeps until around 11am.
School: School's about the same schedule. They make sure to get her in her stander. Interestingly enough, they say she's clearer in her stander than in her chair. I don't think a lot of academic work is happening right now, with how hard it is for her to communicate and everything else they have going on in their classroom. She's up and down at school. If she stays home, Paula tries to get her up in her chair when she wakes up and see how long she will tolerate it. Usually she'll stay up for three or four hours before she starts to get junky again. Sometimes it's more like an hour or two, just depends on how bad she is. Paula tries to do things with her, like read a book or sometimes get out of the house for a minute, or watch a show. She talks to her a lot while working around the house too.
4:30pm: Home from school if she took the bus. If she rode the bus in the morning she's usually good to ride it home too. Sometimes Paula gets a call asking to come get Becca if she's having a harder day. Becca's teacher is very patient and supportive, and tries to keep her there as much as she can because they have a good team and can work with her and keep an eye on her, but sometimes she just gets really worked up or her breathing gets too raspy. After a while we do a diaper change. When she changes positions she sometimes does this rhythmic muscular spasm for anywhere from 2 to 15 minutes. It takes away her focus and makes her sweat a lot and really wears her out. It's actually been around for a few years, it used to just show up when she'd get sick or sleep deprived, but it visits us a couple times a day lately.
5:30pm: We still try to do school time. Some days she can interact really well. It's a bit more one-way than is used to be, though, because her answers come in spurts. When she's anxious it's hard to get a response out of her, her eyes roll up and she can't seem to make eye contact. So we watch videos and talk about types of clouds and try to read a word or two. There were times when we could try to answer some harder questions or try to read tricky sentences if I mixed it in with easier fun stuff, but it's been hard to push lately, it's more been about maintaining and just talking about interesting topics. When she's really bad we're lucky to get one or two questions out of her and I'm not sure how much she's following, so we do art things. It's hard because it's clear she wants to engage, and when we work on bigger projects she's proud of them, and sometimes she'll seem so out of it but somebody will make a witty joke and she'll chuckle at it, so I know she's still there, but I don't know how much she can really take in.
6pm: Albuterol and compression vest treatment for 12 minutes. We sing songs and get the other kids to join in.
6:30pm: Dinner. We blend it up just like before. Some nights she says she doesn't feel safe eating (I originally wrote "doesn't want to eat" but that's not true and you have to be specific with how you ask her. She always wants to eat so if you ask if she wants to eat she'll say "yes/no". You have to ask if she feels safe eating. She's very literal, just like her father :-) ) so we just do formula. If she wants to eat she'll get a max of 10 bites in before the bad coughs show up, so we supplement with formula. She usually has to lie down again after dinner, even if she doesn't eat.
7:30pm: Get ready for bed. Melatonin, trileptal and more formula. In the past we've given her two 1mg dissolving melatonin pills by mouth, but when she's bad that causes some really bad coughs and chokes, so we crush them and do it through her feeding tube if we need to.
8pm: Bed. She usually does lots better once she's asleep. Some nights she sleeps on her side if she's had a rough day, it's easier for her to keep herself clear that way. Over the years she's gotten different night lights and stuffed animals from people, so she usually has a few good choices for how she wants to fall asleep :-).
Showing posts with label schedule. Show all posts
Showing posts with label schedule. Show all posts
Friday, December 30, 2016
Sunday, May 1, 2016
Becca's Schedule - May 2016
This is a catch-up because things have changed, but I wanted a placeholder for how things were recently.
4-5am: Wake up. Between 5 and 6 Paula gets up and talks to her. She helps Becca pick an outfit and decide if she wants to listen to music or an audiobook or just have quiet time.
7:30am: Brian gets up and gives Becca breakfast, usually yogurt or something hot blended up. Then trileptal, 2tsp of miralax and 3ish tubes of formula.
8:30am: Becca gets picked up for school on the bus.
School: I don't know for sure, but it seems like she gets off the bus, they do diaper changes, circle time, formula for lunch, some small group activities and individual time, with more changing mixed in. She always gets an hour in the stander as well.
4:20pm: Becca comes home on the bus. Paula gives her a formula snack.
5:30pm: School time. We take the Utah state standards for Becca's year and throw out things that don't apply (like keyboarding skills and cooperating in team projects), then focus on topics for a week. We mix in recurring things like math and reading comprehension. We do a couple different writing and art projects each year, then a lot of experiments, videos, and hands-on stuff. It's probably sort of like home-schooling if you only had half an hour each day, so not a lot of room for repetition and practice. Math is super slow and hard.
6:30pm: Dinner. We blend up her food and she eats enough to fill up until dinner.
7:30pm: Get ready for bed. Two melatonin pills, trileptal and four tubes of formula.
8pm: Bed.
4-5am: Wake up. Between 5 and 6 Paula gets up and talks to her. She helps Becca pick an outfit and decide if she wants to listen to music or an audiobook or just have quiet time.
7:30am: Brian gets up and gives Becca breakfast, usually yogurt or something hot blended up. Then trileptal, 2tsp of miralax and 3ish tubes of formula.
8:30am: Becca gets picked up for school on the bus.
School: I don't know for sure, but it seems like she gets off the bus, they do diaper changes, circle time, formula for lunch, some small group activities and individual time, with more changing mixed in. She always gets an hour in the stander as well.
4:20pm: Becca comes home on the bus. Paula gives her a formula snack.
5:30pm: School time. We take the Utah state standards for Becca's year and throw out things that don't apply (like keyboarding skills and cooperating in team projects), then focus on topics for a week. We mix in recurring things like math and reading comprehension. We do a couple different writing and art projects each year, then a lot of experiments, videos, and hands-on stuff. It's probably sort of like home-schooling if you only had half an hour each day, so not a lot of room for repetition and practice. Math is super slow and hard.
6:30pm: Dinner. We blend up her food and she eats enough to fill up until dinner.
7:30pm: Get ready for bed. Two melatonin pills, trileptal and four tubes of formula.
8pm: Bed.
Thursday, August 8, 2013
Becca's Schedule - May 2013
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.
9:30am: nap.
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.
6:00pm: dinner.
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.
8:00pm: 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.
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.
9:30am: nap.
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.
6:00pm: dinner.
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.
8:00pm: 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.
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.