So, Thursday I was predicting a disaster at breakfast. Sarah was being a booger in the morning. She had her usual pudding and yogurt early, which is fine. However, while I was dressing her little brother, she helped herself to two more puddings. She was in the middle of her third pudding of the morning when I stopped her. I was so mad.
She did well, though, for breakfast. She did a happy dance when she saw D (her main feeder) was back. It was really cute. I told her feeder what happened this morning, and she didn't push volume on her when it was clear Sarah was getting full and slowing down. She had two foods of higher texture that morning and did well with both.
I was able to run to the Whole Foods downtown while Sarah hung out in the playroom and get some more of the "Elmo pasta." It's just tomato soup with Elmo shaped pasta. We were all out at home and at the clinic, and it's royally expensive everywhere except Amazon (should be getting a shipment soon) and Whole Foods. Not that it's cheap either of those places, but significantly cheaper than at regular grocery stores. It is also not carried at most grocery stores here.
Lunch was also two higher texture foods. All of her fruits are now of a higher texture, as are several of her vegetables. She is doing great with it.
That day, she had school after lunch and then speech right after that. It's rare that she has anything other than school after lunch, so that was a bit odd. She was a bit difficult at school, but not bad. She was just unfocused, and that's Mommy's fault for forgetting Sarah's medication. Oops. Mommy has since set a reminder on her phone since her brain obviously isn't working.
At speech they were working to get her to eat some dried bananas. It was a decent session, and she is definitely putting up much less of a fight, and asking for Mommy a lot less. She doesn't really even cry much anymore, so that's good.
That night, I had an ounce of motivation to drag myself to the gym. I packed up both kids and went before I changed my mind. That was quite the adventure. I'm thankful the gym where we have a membership has excellent childcare. They never even batted an eye the first time I told them Sarah was autistic. Anyway, I dropped the kids at childcare, reminded them of Sarah's needs, and then headed to the locker room to get myself ready to work out. I was afraid if I took the time to change into workout clothing at home that the motivation might disappear. That's how bad my exercise attitude is.
WARNING: THIS PART OF THE BLOG NOT FOR THE SQUEAMISH
Anyway, I had just gotten changed and ready to start my workout when a childcare staff member came to tell me Sean had pooped (they don't change diapers). I was kind of surprised seeing as he's been potty trained for a while and rarely has a #2 accident, but he is weird about telling people he doesn't know well that he has to use the bathroom. I grabbed his change of clothes and headed to the childcare room. I told the staff when I got there why I was surprised. I checked him and he was clean and dry. They said another kid had blamed the smell on Sean, and Sean had replied yes when asked if he'd pooped. They apologized profusely, and I told him it was fine. How were they supposed to know my weird kid was going to take the blame for some other kid's smell?
So, I started my workout, and had about five minutes to go on the elliptical when the child care staff member came to tell me that it was Sarah this time and they were SURE. I assured them I wasn't surprised and that I'd be right there. Sarah isn't bowel trained and was due for one of those any minute. I got to the childcare room, and I spotted Sean doing the potty dance. Big time. They said he'd told them he didn't have to go potty. The minute he saw me, he headed right to the bathroom. The goofball had his pants halfway down before I could shut the door. I sent him on his way once he was done, cleaned up and changed his sister, and finally headed back to finish my workout.
Needless to say, I was EXHAUSTED when I was done.
GROSS PART OVER
Friday was okay for the most part. D was out again, but I was able to prepare Sarah in advance. A lot of times my attempts at explaining, oh, anything to Sarah go in one ear and out the other, but this one seemed to sink in okay. She was fine with having B around, although she did say that B was going to go home (I'd told her D was home that day instead of at feeding school). B simply replied that she was going home after dinner like Sarah, and Sarah accepted that answer.
All of her meals went fine. Her dinner was all higher texture foods except yogurt. She did great with all of it and was reminding herself to move it around her mouth.
We spent a lot of time discussing her behavioral issues. She isn't terrible in the playroom. She just shoves a kid once or twice a day out of nowhere, it seems. So, they are trying to get to the bottom of it. She is also being mean to her brother at home, so I'm not super surprised. It seems to have been a tad better over the past few days, but some of it is due to a lack of opportunity.
Another thing we're working on, and I discussed this with one of the staff yesterday, is breaking Sarah of her insistence on using a potty ring to go to the bathroom. She is obsessed with it, and is plenty big enough to sit on a regular adult seat. It's been a tough process to get her used to sitting on a regular adult seat, but we're getting there.
She's started this little stunt where she always asks to go potty in the middle of her school time. I really don't like this because she only gets a half hour of school instruction as it is. A potty trip in the middle is time wasted. Her second feeding therapist, B, and I made her go to the bathroom, but it took a lot of work on our parts. I am hoping that if I bring a visual schedule with me to the clinic, that will stop this behavior. She used to pull this stunt all the time at hockey. She'd swear up and down that she didn't have to go potty until her hockey gear was on. We'd take her gear off, take her to the bathroom, put her gear back on, etc.
Today, she had hockey practice, but it took us a while to get out the door, so she didn't get to skate as long as she normally could because we were late. She also had her therapy appointment this afternoon, and dragging both kids was not a disaster like it usually is. I had my dance class later today, and my goddaughter kept Sean busy while Sarah "participated" in my class. She was pretty funny. She was doing a lot of our exercises and trying to do our dance. It was really cute.
Tomorrow, we are going to Disney On Ice. I think that will be pretty fun. She is usually pretty good at these kinds of things, so hopefully that will continue.
Saturday, February 11, 2012
Wednesday, February 8, 2012
Day 16
Wow, 16 days. Are we really starting our fourth week?
Anyway, so Sarah's main feeder (D) was out today. Sarah was pretty sad about that at breakfast. I felt bad for her and joked with her second feeder (B) that D is going to have to clear all future days off with Sarah. She's off on Friday too, so I'm going to try and warn Sarah ahead of time. I'm sure like most of what I say to Sarah, it will likely be a waste of my time. You can't blame me for trying, though, can you?
She had a busy day today - speech, OT, school, and her three meals, of course. She did well, though. At breakfast, she had one food of a higher texture and three purees. The higher texture was peaches. B reminded her to move them through her mouth, and she did that with most of the bites. Sometimes she just swallows them, but overall she's doing a great job with trying to move the food around and chew it.
OT went okay, but was not her best session. They got her to put fork-mashed vegetables in her mouth, but she spit them out apparently. The OT wasn't too upset about it. She said that Sarah is super interested in corn, which doesn't surprise me since she adores the corn baby food. Go figure.
Sarah did well at speech. She didn't fuss much about any of the therapy tools, and was using them correctly when doing them herself after some demonstration. There was a bit of protest, but I don't think she cried. If she did, I don't remember, so I doubt she cried much if at all. (Mommy probably shouldn't blog when her brain is fuzzy. Then again, if that were the case, this blog would almost never be updated).
At lunch, she had one food of higher texture with her three purees. She did just fine there too.
After lunch, she had school. The little booger was driving me nuts before. I asked her before lunch if she had to use the bathroom. She said no, so I let it go. After lunch, I asked her if she had to go, she said no. I must have asked her to go a zillion times between the time she finished lunch and when it was time to head to school, and she insisted she didn't have to go and even started to throw a tantrum. So, what happened when she started school? She had to go to the bathroom ten minutes into it. Ugh. That's better than the puddle that occurred after her school session on Monday when she was adamant that she didn't have to go potty.
At dinner, she got two different foods of a higher texture instead of one. Broccoli and cheese was one of them. The other may have been peaches again, but right now I can't remember. She made some faces with the broccoli and cheese, but she got it down and moved it around and tried to chew. Very well done. She accepted all of her bites. I was very impressed.
Anyway, so Sarah's main feeder (D) was out today. Sarah was pretty sad about that at breakfast. I felt bad for her and joked with her second feeder (B) that D is going to have to clear all future days off with Sarah. She's off on Friday too, so I'm going to try and warn Sarah ahead of time. I'm sure like most of what I say to Sarah, it will likely be a waste of my time. You can't blame me for trying, though, can you?
She had a busy day today - speech, OT, school, and her three meals, of course. She did well, though. At breakfast, she had one food of a higher texture and three purees. The higher texture was peaches. B reminded her to move them through her mouth, and she did that with most of the bites. Sometimes she just swallows them, but overall she's doing a great job with trying to move the food around and chew it.
OT went okay, but was not her best session. They got her to put fork-mashed vegetables in her mouth, but she spit them out apparently. The OT wasn't too upset about it. She said that Sarah is super interested in corn, which doesn't surprise me since she adores the corn baby food. Go figure.
Sarah did well at speech. She didn't fuss much about any of the therapy tools, and was using them correctly when doing them herself after some demonstration. There was a bit of protest, but I don't think she cried. If she did, I don't remember, so I doubt she cried much if at all. (Mommy probably shouldn't blog when her brain is fuzzy. Then again, if that were the case, this blog would almost never be updated).
At lunch, she had one food of higher texture with her three purees. She did just fine there too.
After lunch, she had school. The little booger was driving me nuts before. I asked her before lunch if she had to use the bathroom. She said no, so I let it go. After lunch, I asked her if she had to go, she said no. I must have asked her to go a zillion times between the time she finished lunch and when it was time to head to school, and she insisted she didn't have to go and even started to throw a tantrum. So, what happened when she started school? She had to go to the bathroom ten minutes into it. Ugh. That's better than the puddle that occurred after her school session on Monday when she was adamant that she didn't have to go potty.
At dinner, she got two different foods of a higher texture instead of one. Broccoli and cheese was one of them. The other may have been peaches again, but right now I can't remember. She made some faces with the broccoli and cheese, but she got it down and moved it around and tried to chew. Very well done. She accepted all of her bites. I was very impressed.
Tuesday, February 7, 2012
Day 15
Three weeks under our belts now. I can't believe it's been three weeks. In a lot of ways, I feel like we just got here, but in some ways I feel like we live at KKI. I suppose that's normal and part of the process.
Sarah did really well with her meals today. They upped her texture for one food per meal. Her new food at breakfast was apricots at a higher texture. I guess they were about the consistency of regular applesauce, but it's hard to tell through the glass. Her therapist told her at the beginning of the meal that she'd have to chew them and move them around her mouth, and when she gave her the bites of apricots (the first few times, I think, probably not every time but my memory is a little fuzzy). Sarah did a great job and really tried to chew them, even though they really didn't require chewing. I was really proud of her because she normally would have just swallowed them and made no attempt to chew them. Go Sarah!
At lunch, the new food was broccoli and cheese at a higher texture. It was definitely more gritty than the other higher textures she'd been eating, at least according to the therapists. I despise cooked broccoli (don't tell Sarah that!), so I'll just take their word for it. Sarah did a great job with it and really tried to chew it and move it around her mouth.
At dinner, the higher textured food was beef stew. I think this was thicker than the broccoli because it had beef pieces. Sarah did just fine and moved it around her mouth and tried to chew it.
She didn't refuse a single bite during any of her meals. I was so proud of her! She didn't have any extra therapy today, but she did have school. She made a cute craft for Valentine's Day. I'll have to snap a picture.
We are having some other issues with her now, but the staff told us this was likely to happen. Her outside of meal behavior, which was usually pretty good, has really declined. She has been aggressive with her brother, and apparently she's starting to hit and shove the kids in the playroom. The playroom staff seems to be able to work on it and control it, so we'll see what happens there. I'm disappointed, but not exactly shocked. She's basically lost control of her meals, so she's trying to control what she can. She's the oldest kid there (I am pretty sure she is, anyway), and the biggest, so she takes her frustrations out on the other kids in the playroom, and her little brother at home. What makes things worse is Sarah enjoys it when other kids cry. I don't know why, but she loves to hear it. That drives me NUTS!!! It can be infuriating at times. Tonight when she was being mean to her brother and sitting in time out, I took her brother into another room to calm him down to help take away that reaction she may be craving. I don't know if it will help at all, but I don't know what else to do with her. I am hoping the aggression is a phase that passes quickly.
In Sean-related news, he's doing well (when not getting beaten up by his sister). I was very concerned about how he'd respond to spending most of his days at Grammy and Granddad's, but he really doesn't seem to mind. My parents are great about taking him to his various appointments, and school when he starts it next week. I'm sad to be missing his first day, but in the grand scheme of things, I suppose it doesn't matter. Someday if he realizes it and asks, I'll explain it and hopefully he'll understand. I spoke with his teacher from his library group and she told me that due to his IEP goals, he has a guaranteed spot in the public pre-K if we want it next year. I told her we do, so we'll work on getting that set up in the coming months. That should be nice. No more paying through the nose for school, and he can even ride the bus. We'll see if Mommy has the nerve to put the little guy on the bus with the big kids or if she'll just have him ride the bus at mid-day and transport him the other time. I have a feeling it's going to be the latter, just because he's so little. It was different with Sarah because she had a special ed bus and an aide on the bus. That won't be the case for him, and I would just worry about such a little guy getting lost in the shuffle.
I suppose that's enough for now. Mommy is tired and tomorrow is another long day at the clinic.
Sarah did really well with her meals today. They upped her texture for one food per meal. Her new food at breakfast was apricots at a higher texture. I guess they were about the consistency of regular applesauce, but it's hard to tell through the glass. Her therapist told her at the beginning of the meal that she'd have to chew them and move them around her mouth, and when she gave her the bites of apricots (the first few times, I think, probably not every time but my memory is a little fuzzy). Sarah did a great job and really tried to chew them, even though they really didn't require chewing. I was really proud of her because she normally would have just swallowed them and made no attempt to chew them. Go Sarah!
At lunch, the new food was broccoli and cheese at a higher texture. It was definitely more gritty than the other higher textures she'd been eating, at least according to the therapists. I despise cooked broccoli (don't tell Sarah that!), so I'll just take their word for it. Sarah did a great job with it and really tried to chew it and move it around her mouth.
At dinner, the higher textured food was beef stew. I think this was thicker than the broccoli because it had beef pieces. Sarah did just fine and moved it around her mouth and tried to chew it.
She didn't refuse a single bite during any of her meals. I was so proud of her! She didn't have any extra therapy today, but she did have school. She made a cute craft for Valentine's Day. I'll have to snap a picture.
We are having some other issues with her now, but the staff told us this was likely to happen. Her outside of meal behavior, which was usually pretty good, has really declined. She has been aggressive with her brother, and apparently she's starting to hit and shove the kids in the playroom. The playroom staff seems to be able to work on it and control it, so we'll see what happens there. I'm disappointed, but not exactly shocked. She's basically lost control of her meals, so she's trying to control what she can. She's the oldest kid there (I am pretty sure she is, anyway), and the biggest, so she takes her frustrations out on the other kids in the playroom, and her little brother at home. What makes things worse is Sarah enjoys it when other kids cry. I don't know why, but she loves to hear it. That drives me NUTS!!! It can be infuriating at times. Tonight when she was being mean to her brother and sitting in time out, I took her brother into another room to calm him down to help take away that reaction she may be craving. I don't know if it will help at all, but I don't know what else to do with her. I am hoping the aggression is a phase that passes quickly.
In Sean-related news, he's doing well (when not getting beaten up by his sister). I was very concerned about how he'd respond to spending most of his days at Grammy and Granddad's, but he really doesn't seem to mind. My parents are great about taking him to his various appointments, and school when he starts it next week. I'm sad to be missing his first day, but in the grand scheme of things, I suppose it doesn't matter. Someday if he realizes it and asks, I'll explain it and hopefully he'll understand. I spoke with his teacher from his library group and she told me that due to his IEP goals, he has a guaranteed spot in the public pre-K if we want it next year. I told her we do, so we'll work on getting that set up in the coming months. That should be nice. No more paying through the nose for school, and he can even ride the bus. We'll see if Mommy has the nerve to put the little guy on the bus with the big kids or if she'll just have him ride the bus at mid-day and transport him the other time. I have a feeling it's going to be the latter, just because he's so little. It was different with Sarah because she had a special ed bus and an aide on the bus. That won't be the case for him, and I would just worry about such a little guy getting lost in the shuffle.
I suppose that's enough for now. Mommy is tired and tomorrow is another long day at the clinic.
Monday, February 6, 2012
Day 14
Sarah did well today. She also had a good weekend. She got a little adventurous and tried pizza and a fruit snack. She put the pizza up to her mouth and got some sauce. That's as far as it got, but a good attempt on her part. She put the fruit snack up to her mouth, but that's still more than she usually does. She generally has little interest in foods outside what she normally eats.
Today, she had OT and speech in addition to the usual meals and school time. Breakfast was relatively normal, but they introduced a new food: waffles. It was pureed, so I doubt they were any different from pancakes to her. I don't even think she made a face, but it's possible I am remembering wrong.
At OT, she did well. She ate a mixture of fork-mashed carrots with pureed carrots. She ate some crumbs with a therapy tool, and I think they are looking at putting crumbs in a puree at some point. I don't know when they plan on doing that.
Speech went well, but was very difficult for her. The poor kid threw up a little during her session. She got a bigger piece of food than she is used to eating further back into her mouth than she is used to having anything solid, and she gagged to the point of vomiting. I felt bad for her, but she actually didn't freak out as much as I was expecting. The therapist was able to get her to continue with the session, so that was good.
They upped her texture at lunch. She got regular applesauce with her meal, and the rest was pureed food. She made a few faces, but she did fine. We expected that.
She had school this afternoon, and did fine. Her teacher said she was singing a song she didn't recognize, and I realized it was her ballet song from this year's upcoming recital. Too cute!
At dinner, her carrots were the thicker texture. Her therapist told her she'd have to chew them a little, and she actually did move them through her mouth and chew them. I was really impressed with her working through them. She didn't complain or whine or make any faces. She didn't refuse any bites at all.
So, a great job today by Sarah!
Today, she had OT and speech in addition to the usual meals and school time. Breakfast was relatively normal, but they introduced a new food: waffles. It was pureed, so I doubt they were any different from pancakes to her. I don't even think she made a face, but it's possible I am remembering wrong.
At OT, she did well. She ate a mixture of fork-mashed carrots with pureed carrots. She ate some crumbs with a therapy tool, and I think they are looking at putting crumbs in a puree at some point. I don't know when they plan on doing that.
Speech went well, but was very difficult for her. The poor kid threw up a little during her session. She got a bigger piece of food than she is used to eating further back into her mouth than she is used to having anything solid, and she gagged to the point of vomiting. I felt bad for her, but she actually didn't freak out as much as I was expecting. The therapist was able to get her to continue with the session, so that was good.
They upped her texture at lunch. She got regular applesauce with her meal, and the rest was pureed food. She made a few faces, but she did fine. We expected that.
She had school this afternoon, and did fine. Her teacher said she was singing a song she didn't recognize, and I realized it was her ballet song from this year's upcoming recital. Too cute!
At dinner, her carrots were the thicker texture. Her therapist told her she'd have to chew them a little, and she actually did move them through her mouth and chew them. I was really impressed with her working through them. She didn't complain or whine or make any faces. She didn't refuse any bites at all.
So, a great job today by Sarah!
Saturday, February 4, 2012
Days 12-13
Another week over at the clinic.
Sarah is doing well. Thursday, Sarah was thrown for a bit of a loop because her second feeding therapist was out sick. Her main feeding therapist was there, though. It, unfortunately, meant that her main feeding therapist wasn't at the steering meeting because it was during breakfast and she had to feed Sarah. I did find out that Sarah had 100% acceptance at breakfast, and that was just after the meal where the new protocol had been introduced. Obviously, she's gotten the point very quickly.
The meeting went very well. We conference called Daddy in, so he could be aware of what is going on and understand their methods. They did have some of Sarah's history incorrect, so we straightened it out. I suppose it honestly isn't a huge deal, but they had mistakenly thought that Sarah had eaten table food normally up until age two. We explained to them that, no, she didn't. Not really, anyway. She began baby food normally and without an issue, but was never really able to eat table food. She's never eaten a Cheerio or other beginning table food. She did go through a phase just after her second birthday where she began to start chewing some food - canned pasta with meat (Chef Boyardee). It was short-lived, and when she got a long string of ear infections, the poor kid lose that ability and never got it back, even after getting ear tubes. Anyway, each of the disciplines went over what they're teaching Sarah and how it will work together to eventually get Sarah to eat age-appropriate textures. The nutritionist said that Sarah accepts a wonderful variety of foods (in pureed form, of course), and is getting enough calories and nutrients. Her case manager explained that we can't move too quickly with textures because Sarah doesn't understand the concept of chewing food yet. She doesn't know how to move the food around her mouth and chew it. If we got her to accept a new texture right now, she'd likely just mash it in her mouth and swallow it real quick. That's not the right way to eat and it could pose a choking hazard. So, her feeding therapists will work closely with speech and OT to determine when she is ready to try some higher textures to make sure she understands how to do it safely and correctly.
So, back to her meals. Her main feeding therapist had a follow-up patient to work with shortly after Sarah's meal, so she had another therapist feed her, just in case the meal took long. She watched from the observation room with me and only came in when a blocker was needed. Sarah refused ONE bite of food. She was likely testing the other therapist. She figured out she wasn't getting away with anything from her either, so she accepted the rest of the bites.
At dinner, they tried a new food, pizza (in pureed form, I think they add extra sauce or something to bring it down). Sarah made some weird faces, but she accepted all of her bites. Her therapists were very pleased that she responded so quickly to the new protocol and has learned who is the boss.
On Friday, Sarah was happy to see her second feeding therapist back. She was watching an Elmo video during her meal, and when Elmo sang "that's Elmo's world," she sang "that's Miss B's world." (name withheld for privacy reasons) I guess Sarah missed her. She did very well and didn't throw any food. She did great for lunch and dinner as well. She had the pureed pizza again for lunch, and made less faces this time. For dinner, she got a new food, pureed cheeseburger. It didn't look as scary as I was expecting. She made some really interesting faces, but never threw it at all. I was really pleased with her.
Her main therapist will be out on Monday, so I'm sure Sarah will be at least a bit upset about it. Maybe she (D) will get a cool Sarah song on Tuesday.
I believe they are kicking the textures up a notch early next week, although I don't know exactly when.
In blog news, I have finally taken the time to adjust a few things here. I enabled the mobile setting so people looking at this on a phone can read it more easily. I am probably going to tweak a few more settings as well this weekend. I also set up the blog so I can e-mail my posts. Hopefully this means I'll be able to update from KKI afterall.
Sarah is doing well. Thursday, Sarah was thrown for a bit of a loop because her second feeding therapist was out sick. Her main feeding therapist was there, though. It, unfortunately, meant that her main feeding therapist wasn't at the steering meeting because it was during breakfast and she had to feed Sarah. I did find out that Sarah had 100% acceptance at breakfast, and that was just after the meal where the new protocol had been introduced. Obviously, she's gotten the point very quickly.
The meeting went very well. We conference called Daddy in, so he could be aware of what is going on and understand their methods. They did have some of Sarah's history incorrect, so we straightened it out. I suppose it honestly isn't a huge deal, but they had mistakenly thought that Sarah had eaten table food normally up until age two. We explained to them that, no, she didn't. Not really, anyway. She began baby food normally and without an issue, but was never really able to eat table food. She's never eaten a Cheerio or other beginning table food. She did go through a phase just after her second birthday where she began to start chewing some food - canned pasta with meat (Chef Boyardee). It was short-lived, and when she got a long string of ear infections, the poor kid lose that ability and never got it back, even after getting ear tubes. Anyway, each of the disciplines went over what they're teaching Sarah and how it will work together to eventually get Sarah to eat age-appropriate textures. The nutritionist said that Sarah accepts a wonderful variety of foods (in pureed form, of course), and is getting enough calories and nutrients. Her case manager explained that we can't move too quickly with textures because Sarah doesn't understand the concept of chewing food yet. She doesn't know how to move the food around her mouth and chew it. If we got her to accept a new texture right now, she'd likely just mash it in her mouth and swallow it real quick. That's not the right way to eat and it could pose a choking hazard. So, her feeding therapists will work closely with speech and OT to determine when she is ready to try some higher textures to make sure she understands how to do it safely and correctly.
So, back to her meals. Her main feeding therapist had a follow-up patient to work with shortly after Sarah's meal, so she had another therapist feed her, just in case the meal took long. She watched from the observation room with me and only came in when a blocker was needed. Sarah refused ONE bite of food. She was likely testing the other therapist. She figured out she wasn't getting away with anything from her either, so she accepted the rest of the bites.
At dinner, they tried a new food, pizza (in pureed form, I think they add extra sauce or something to bring it down). Sarah made some weird faces, but she accepted all of her bites. Her therapists were very pleased that she responded so quickly to the new protocol and has learned who is the boss.
On Friday, Sarah was happy to see her second feeding therapist back. She was watching an Elmo video during her meal, and when Elmo sang "that's Elmo's world," she sang "that's Miss B's world." (name withheld for privacy reasons) I guess Sarah missed her. She did very well and didn't throw any food. She did great for lunch and dinner as well. She had the pureed pizza again for lunch, and made less faces this time. For dinner, she got a new food, pureed cheeseburger. It didn't look as scary as I was expecting. She made some really interesting faces, but never threw it at all. I was really pleased with her.
Her main therapist will be out on Monday, so I'm sure Sarah will be at least a bit upset about it. Maybe she (D) will get a cool Sarah song on Tuesday.
I believe they are kicking the textures up a notch early next week, although I don't know exactly when.
In blog news, I have finally taken the time to adjust a few things here. I enabled the mobile setting so people looking at this on a phone can read it more easily. I am probably going to tweak a few more settings as well this weekend. I also set up the blog so I can e-mail my posts. Hopefully this means I'll be able to update from KKI afterall.
Wednesday, February 1, 2012
Days 9-11
So, I'm behind again. Sorry. I've been busy at home, and the stupid computer at KKI won't connect to the page I need to use to update this. It sucks because I actually have a chunk of time to update from there. But I digress...
Monday, Sarah had a huge breakthrough. For those who didn't see it on Facebook, Sarah ate a green bean! She actually chewed up a cooked green bean. I was so proud of her. It happened at OT, so I didn't see it, but she said that they were using a therapy tool like before to get her to eat it, and a piece fell out on her lips. She put it back in, chewed it, and swallowed it. Go Sarah!
Unfortunately, she also went back to throwing food. She threw pancakes (pureed) at breakfast, chicken noodle at lunch, and that was all over her hair and her shirt. It was a mess and I didn't have an extra shirt for her. I now have a couple I keep in my locker. She didn't throw her dinner, though. Speech went okay on Monday, although I wasn't able to watch because her therapist had to switch rooms and didn't have one where I could watch undetected. They started that day with a reinforcer. She can watch a movie during the meal, but it goes off if she refuses the bite. She can earn it back if she takes the next one okay.
Tuesday, she had pureed pancakes again for breakfast, but she didn't throw them. They introduced sweet potatoes for lunch. I was correct in my assumption that they'd go over just fine. She loves the Gerber ones, and she never even made a face at the ones they made at the clinic. At dinner, they introduced corn, and re-introduced fruit cocktail (something she threw before). She gave the corn a really good try. I think she ate at least half of it, but then started to refuse it. She didn't throw it, though. She just kind of pushed it away, or tried to dump the spoon. Unfortunately, one of the refusals ended up with her wiping some of it on her hands and then in her hair. That kid has had to have a bath every night so I can get the food out of her hair!
Sarah also started school with the KKI teacher yesterday. She really liked the teacher and went willingly. I came in for part of the session and told her what Sarah can do and had Sarah show her what she can do. I think that is going to work out pretty well. She and Sarah's teacher have already talked and I think some work has been e-mailed. I don't know.
Monday, Sarah had a huge breakthrough. For those who didn't see it on Facebook, Sarah ate a green bean! She actually chewed up a cooked green bean. I was so proud of her. It happened at OT, so I didn't see it, but she said that they were using a therapy tool like before to get her to eat it, and a piece fell out on her lips. She put it back in, chewed it, and swallowed it. Go Sarah!
Unfortunately, she also went back to throwing food. She threw pancakes (pureed) at breakfast, chicken noodle at lunch, and that was all over her hair and her shirt. It was a mess and I didn't have an extra shirt for her. I now have a couple I keep in my locker. She didn't throw her dinner, though. Speech went okay on Monday, although I wasn't able to watch because her therapist had to switch rooms and didn't have one where I could watch undetected. They started that day with a reinforcer. She can watch a movie during the meal, but it goes off if she refuses the bite. She can earn it back if she takes the next one okay.
Tuesday, she had pureed pancakes again for breakfast, but she didn't throw them. They introduced sweet potatoes for lunch. I was correct in my assumption that they'd go over just fine. She loves the Gerber ones, and she never even made a face at the ones they made at the clinic. At dinner, they introduced corn, and re-introduced fruit cocktail (something she threw before). She gave the corn a really good try. I think she ate at least half of it, but then started to refuse it. She didn't throw it, though. She just kind of pushed it away, or tried to dump the spoon. Unfortunately, one of the refusals ended up with her wiping some of it on her hands and then in her hair. That kid has had to have a bath every night so I can get the food out of her hair!
Sarah also started school with the KKI teacher yesterday. She really liked the teacher and went willingly. I came in for part of the session and told her what Sarah can do and had Sarah show her what she can do. I think that is going to work out pretty well. She and Sarah's teacher have already talked and I think some work has been e-mailed. I don't know.
She had OT Tuesday as well, but I didn't get a chance to catch up with her OT and ask what happened there.
Today they introduced pureed banana (very different from Gerber, believe me), for breakfast and Sarah gave it a good try but decided it needed to go flying. They were going to adjust her protocol to stop the throwing for lunch, but didn't have time to get official approval. It didn't matter because Sarah didn't throw her lunch! Corn was re-introduced, and she made a few faces, but ate all of it. The little goof also ate the whole meal with her hood up. I took a pic because it was so funny.
She had OT again today, but I didn't get a chance to talk with her OT. That seems to be the trend this week! Anyway, she also had speech and that was a tough session. Her speech therapist does so well with her. She doesn't let Sarah get away with a thing. Sarah can put up as much of a fight as she wants, but she still has to do what she is told. I do feel bad hearing her cry for me, but I can take it. I have been waiting and fighting way too long to get her into this program, and I can take the crying and the fighting if it's what needs to be done to get her past these issues. She started off doing very well, but gagged on the therapy tool and that's when she put up a fight. She managed to get some crumbs down with a therapy tool, and she gagged then too. She got a little upset, but was okay after a few seconds of crying. I feel bad that this is so hard for her, but that's just the way it is. It just sucks that the insurance put up a fight for over two years because that makes this fight even harder and these habits more ingrained.
Sarah's protocol was adjusted to combat the throwing for dinner. I wasn't sure she was going to throw anything, but she did. After a bit, she decided she was not impressed with pureed pot roast, and it went flying. She was MAD about their new method for making her take the bite (I'm being vague on purpose as their techniques are private and I'm not supposed to post them on a public blog), but she gave in fairly quickly. She was still able to complete the meal and take all her bites. She went to dance class tonight with pureed pot roast in her hair, though. Last week she went with pureed chicken noodle. Three days at the clinic this week, three nights in the bathtub. Since Daddy will be by himself tomorrow night while I'm at the autism society meeting, that should be REALLY interesting tomorrow if she is a mess. Here's hoping she somehow isn't a royal mess tomorrow.
Tomorrow morning is our big steering meeting where we talk with the whole team about goals, expectations, and all sorts of other interesting things. We'll be conference-calling Daddy in so he's on board with everything. This is too big not to involve him. I just hope this all goes smoothly and we can all decide together what is best for Sarah and set some realistic goals.
Here's the little goof with her hood up
Cute artwork in the hallway done by the playroom staff. Notice Elmo was involved too and is placed by Sarah?
Sunday, January 29, 2012
Days 7 & 8
Looks like I'm getting into a bad habit of not updating. Well, in my defense, I did try on Friday from KKI, but the stupid computer wasn't connecting to the blog site and it's way too tough to do this from my phone.
Thursday, they scaled back to preferred foods to see if that would stop the throwing. They wanted to make sure that Sarah is throwing food because she doesn't like it, and not because she's full or some other reason. Sarah spit out one bite at breakfast, and then threw the next bite, but was okay otherwise. I'm sure the reason she spit out the bite was because they had mixed two foods together and Sarah didn't like it. She rarely spits out food, so I'm pretty sure that was it. Besides, pureed peaches mixed with strawberry-banana yogurt sounds kind of gross to me anyway. She did fine at lunch and dinner.
I also had the parenting group to help deal with outside of mealtime behavioral issues. Sarah is a fairly well-behaved kid, but these are good lessons anyway. I have a lot of issues with Sean, and these lessons are a good way to think about things and handle them with both kids. Thankfully since I have put so much work into reigning him in, a lot of this is stuff I know.
I also met with a playroom therapist that day to go over a plan to break Sarah of her insistence on using the potty ring every time she uses the bathroom. So far the plan is going well. We aren't trying it at home until they are successful in the playroom. It's actually going so well in the playroom that they actually want to talk to the therapist and make sure it isn't going too fast. Maybe Sarah's just a quick study.
Sarah also had speech and OT that day. I don't know how OT went because I was tied up in a meeting when that happened, and I can't watch anyway right now. I didn't get a chance to talk to her OT to see how it went. I watched speech, though, and it was her most difficult, yet most successful session. They do seem to be getting through to her, but I know this is so, so hard for her. They are fighting a lot of jaw weakness and sensitivity and it's tough. She did very well drinking water out of an open cup, though. She can do it, but she struggles a lot and the free flow scares her a bit. She prefers a straw or sippy cup. She struggled a bit with it, but then seemed to get the idea. They managed at speech to get part of a "puff" (think finger food for babies that's roughly the size of a Cheerio) into her. They are star-shaped, and they got about one "star point" into her. She cried and fought and eventually gagged as it went down, but she got through it. Her speech therapist said the gagging will get worse before it gets better, but it will stop. We'll see what happens.
A cute story from Thursday:
We had to stop at the pharmacy on the way home from the clinic that night. She decided to have a "conversation" with the car in front of us. She kept saying "Hey, White Car, are you going to the grocery store? Yeah? We're going to the grocery store!" It was so funny. I had to go to two pharmacies to get what we need, but I got it.
Friday was an easier day for us. Sarah had OT at the clinic, but nothing else beyond the usual meals. Breakfast was more preferred food, and Sarah did fine and didn't throw anything. She did fine for lunch and dinner, even though they'd added in foods she had previously thrown. A few things got some funny faces, but otherwise she ate them just fine.
She said she had wanted to take a nap that afternoon and was looking tired, but she didn't sleep when they made her a bed and everything. Weird, but okay.
Time for me to head to bed as it is more of the same tomorrow.
Thursday, they scaled back to preferred foods to see if that would stop the throwing. They wanted to make sure that Sarah is throwing food because she doesn't like it, and not because she's full or some other reason. Sarah spit out one bite at breakfast, and then threw the next bite, but was okay otherwise. I'm sure the reason she spit out the bite was because they had mixed two foods together and Sarah didn't like it. She rarely spits out food, so I'm pretty sure that was it. Besides, pureed peaches mixed with strawberry-banana yogurt sounds kind of gross to me anyway. She did fine at lunch and dinner.
I also had the parenting group to help deal with outside of mealtime behavioral issues. Sarah is a fairly well-behaved kid, but these are good lessons anyway. I have a lot of issues with Sean, and these lessons are a good way to think about things and handle them with both kids. Thankfully since I have put so much work into reigning him in, a lot of this is stuff I know.
I also met with a playroom therapist that day to go over a plan to break Sarah of her insistence on using the potty ring every time she uses the bathroom. So far the plan is going well. We aren't trying it at home until they are successful in the playroom. It's actually going so well in the playroom that they actually want to talk to the therapist and make sure it isn't going too fast. Maybe Sarah's just a quick study.
Sarah also had speech and OT that day. I don't know how OT went because I was tied up in a meeting when that happened, and I can't watch anyway right now. I didn't get a chance to talk to her OT to see how it went. I watched speech, though, and it was her most difficult, yet most successful session. They do seem to be getting through to her, but I know this is so, so hard for her. They are fighting a lot of jaw weakness and sensitivity and it's tough. She did very well drinking water out of an open cup, though. She can do it, but she struggles a lot and the free flow scares her a bit. She prefers a straw or sippy cup. She struggled a bit with it, but then seemed to get the idea. They managed at speech to get part of a "puff" (think finger food for babies that's roughly the size of a Cheerio) into her. They are star-shaped, and they got about one "star point" into her. She cried and fought and eventually gagged as it went down, but she got through it. Her speech therapist said the gagging will get worse before it gets better, but it will stop. We'll see what happens.
A cute story from Thursday:
We had to stop at the pharmacy on the way home from the clinic that night. She decided to have a "conversation" with the car in front of us. She kept saying "Hey, White Car, are you going to the grocery store? Yeah? We're going to the grocery store!" It was so funny. I had to go to two pharmacies to get what we need, but I got it.
Friday was an easier day for us. Sarah had OT at the clinic, but nothing else beyond the usual meals. Breakfast was more preferred food, and Sarah did fine and didn't throw anything. She did fine for lunch and dinner, even though they'd added in foods she had previously thrown. A few things got some funny faces, but otherwise she ate them just fine.
She said she had wanted to take a nap that afternoon and was looking tired, but she didn't sleep when they made her a bed and everything. Weird, but okay.
Time for me to head to bed as it is more of the same tomorrow.
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