Wednesday, February 29, 2012

Days 28-30

So, here we are.  3/4 of the way through the program.  She's making amazing progress.

Monday, Sarah was off the charts wild.  Mommy forgot to give her the ADD medication.  Three days in a row.  Oops.  She did fine with her feedings, but was unfocused and hyper.

Anyway, they introduced french toast for breakfast.  Sarah was largely unimpressed.  She did well at first, but then really struggled.  She started gagging on it, and then refusing the bites.  I was told I handled it very well.  One of her therapists brought in some hot water for me to mix in because it got too dry.  That helped a lot.

She had speech in the morning and did great.  She struggled a bit, but mostly got her bites down and did as she was told.  It was really nice to see.

She got a new food for lunch - mixed vegetables.  The cool thing about this was they normally put peas through a strainer before blending them down to remove the shells.  Not that day, and Sarah did just fine with it.  I don't even think she made a face.

In the playroom during the hours the staff isn't there to supervise, I got the joy of dealing with a Sarah poop accident.  Yuck.  Why, oh, why does she always save that for me? Not to say I want her torturing the playroom staff with that mess, but a break would be nice.  Sigh...

She had OT after that, but I forgot to ask how she did.

At dinner, she had chili for the first time and liked it.  I was nervous about it because it has a strong flavor, but she didn't seem to mind after a few initial weird faces.

Tuesday, I remembered to medicate Sarah and she was much calmer.  Thank heaven!  They gave french toast again and she gagged on the first bite, but she was fine after that.  I think she might have been nervous from having such a struggle the day before.  Her food for the chew session was peaches, and she didn't have any issues with that.  It's what she'd been working on since lunch or dinner the day before.

At lunch, her food for the chew session was ravioli and she did great with it.  Her therapist said it was exactly what she was supposed to do.  Cool.  She ate great for me too.

I met with social work that afternoon.  They wanted to make sure things were still fine at home (they are) and get some papers signed so they can call the school and try to coordinate training there.  I also signed a paper giving Sarah's aunt permission to discuss her feeding program.  That would be a little awkward if I didn't, considering she'll be here for training at some point.

At dinner, she had chili again and gave it some very weird faces, but got it all down.  She got spaghetti-o's afterward, and even chewed those (not in a session).  I was really proud of her.

Today was a stellar day for her at the clinic.  She seriously just rocked all of her sessions!

She had regular oatmeal at her chew session.  I mean regular, as in not blended, not made by Gerber, just regular oatmeal.  The last attempt at that was four years ago at her previous clinic and it was a DISASTER.  Not today.  She seemed to love it.  Woo-hoo!  She didn't give me any trouble at breakfast, even when her pancakes got thick toward the end.  She just chewed them a little and worked through it.

She did great at her school session, and her teacher showed me her work.  Sarah really worked hard and did well.  I watched part of OT.  She was eating fork-mashed mac & cheese, diced cucumber in ranch dressing, and she was licking ranch dressing off a pretzel stick.  It was very cool to see.  She is on a one-year-old level with chewing, which is great considering she had basically NO chewing skills when we started.

Her speech session was awesome too.  She didn't spit out a single bite.  She ate green beans, pretzel sticks, and dried bananas.  She needed some help manipulating the food, but she did everything she was asked without fighting or complaining.

Her lunch was great too, although she did gag on her first bite of broccoli and cheese during the chew session.  It seemed to be out of surprise.  The meal I fed her had one food of a higher texture than usual - peaches.  She did fine with them and knew what to do.  She was just ON today.

Dinner was great too.  She had a new food - macaroni and beef (Stouffer's, I think) and didn't have a problem with it at all.

I am loving this new attitude.  I really am.  Go Sarah!

Sunday, February 26, 2012

Days 26-27 & Weekend update

So, slacking again.  My days are long at the clinic, my nights are busy, and my weekends are usually crazy too.

Thursday she had speech and OT, but no school.  As things turned out, she actually only had school on Wednesday this week.  I'm not too thrilled about all the missed time, especially seeing as she only gets a half hour of school a day, but there isn't much I can do about it.  She's a smart girl, and hopefully she'll adjust okay when it's time to go back.  I do practice a little with her at home to see what sight words she knows, but that's about as much as she's willing to do.

So, she did very well at both.  They give her a choice of which food to work on at speech - always crunchy food that dissolves pretty easily.  The little goof keeps picking stuff she doesn't seem to like.  She always does better with the dried bananas, but generally chooses veggie sticks.  Crazy kid.  Her therapist switched her to bananas when she was having a really rough time and she did much, much better.  At OT, her therapist said she did great.  She didn't spit out a single bite!  They've been using a therapy tool to help cue her to chew her foods, but apparently they don't need to use it all the time.  Very cool.

As far as the meals go, breakfast was really good Thursday.  She took in all her bites for the chew session, didn't spit anything out, and just did a great job.  I was really proud of her.  She did great for me, as always.

Lunch, though, didn't go as well.  She was thrown off immediately when she saw both of her therapists, D (main), and B (secondary).  Unfortunately for Sarah, D was in the playroom as a one-on-one for a kid who needs extra supervision.  B was feeding her and another therapist whose name currently escapes me were there to do the chew session.  She immediately threw herself on the ground when she walked into the feeding room and started crying.  I may ask D if she is a one-on-one for this child again if she can let me know ahead of time so maybe we can try and formulate a plan so Sarah doesn't see her before it's time to eat.  Sarah is okay with B feeding her, but it really confused her to see D and then not have D even in the room for the meal.  Maybe I'm coddling her a bit, but with the chewing sessions being so difficult right now, I would prefer not to have an extra battle.  Anyway, despite all of that, she took in all of her bites for the chew session.  She gagged getting some of them down and vomited a tiny bit once.  Not great, but not terrible either.  She was fine for me.

I raced to the gym as soon as she had supervision in the playroom and managed to get back about five minutes before her meal.  I guess it's only fifteen minutes away if you don't managed to hit nearly every red light.  Ugh.  Still, it felt great to leave for a bit and get a workout in.  I am just going to have to leave a bit earlier the next time I go to that gym because that was cutting it too close for comfort.

Dinner was pretty much the same as lunch, except D was there to do the chew session.  She seemed to be having a hard time swallowing the solid bites.  We think it's sensory-related.

That night was guys' night, which meant it was just me and the kids, seeing as their aunt had a class to take.  I was so tired from the gym, and I don't think I stayed up much later than they did.

Friday, we got to the clinic, grabbed her schedule, and saw she was supposed to have school at 9 and it was canceled.  We are lucky to be pulling up to the clinic at 9 most days, and once she's checked in at the nurse's station, it's generally at least 9:15.  I'm glad it was canceled because we weren't going to get there.  She's never had therapy that early.  Weird.

Anyway, she had no other therapy Friday, so it was a long day for us.  Breakfast was rough for Sarah.  She spit a lot of her bites at her chew session, although she did get all of them down eventually.  She was fine for me.

At lunch, they scaled back a little.  They changed the consistency of the pancakes.  They're still a much higher texture than the rest of her food, and she definitely has to chew them, but that seems to be helping a lot. It's almost too easy now, though.  I don't think they plan to do this for long, though.  Just enough to get past the issues they had at the end of the week.  I don't know what to say about her level of challenge, though.  It's so hard to say with her, and if I really knew what I was doing and how to get her past this, she wouldn't be at the clinic.  She was fine for me.

Dinner was the same and went fine as well.  We have another weekend kit at home, and that's going well.  She was funny this morning, though.  I was changing her clothes, and hadn't grabbed something new for her to wear yet.  She decided it was time to eat, so she walked into the kitchen, completely naked, and told me she wanted to eat.  I had to convince her to get clothes on first.  She kept saying "No, Sarah's going to take her bites."  Silly girl.

We spent time yesterday at Ikea getting some new furniture for her room.  It's a disaster area, and part of it is because there's nowhere to put her stuff.  So, with new storage places, theoretically her room will no longer be a scary place to walk.  Ha ha!

Another birthday party for us today.  Her uncle and cousin are both celebrating a birthday today! I'm excited to head to their party and see if Sarah will eat cake again.

Oh, and yesterday morning, Sarah did very well at hockey practice.  She was skating with a hockey stick with help.

Wednesday, February 22, 2012

Baltimore Saints hockey team brings hockey to kids who wouldn't normally get the chance

Baltimore Saints hockey team brings hockey to kids who wouldn't normally get the chance

This is about Sarah's hockey team.  If you look at 2:05, you can see Rob and Sarah walking out toward the ice for a split second.  Of course, anyone reading this blog who doesn't know what my husband looks like will not have a whole lot of luck.  If you see a guy in a black coat walk out, that's him and the kid with him is Sarah.  Either way, it's a great story about the team and what they do for special needs kids.

Days 23-25

I have been so swamped at night lately, and updating from KKI doesn't work.  There is an update by e-mail feature I'm really going to have to try.  But I digress...

So, Sarah DID try cake at her uncle's birthday party.  She spit out the first bite, but swallowed the second and third.  I prompted her to mash, and she got them down just fine.  She said she was done after those bites, and I wasn't going to push it.  I was super proud of her, though, and her therapists are all very happy to hear that she ate cake.  Hopefully since we have two more birthdays (on the same day!) this weekend, she'll eat some cake there too.

Monday, we headed to the clinic, happy to report that the weekend feedings went very well.  I think she refused one bite all weekend, and it was more her spacing out to the Elmo DVD than really refusing.  We had a few issues of her not clearing the spoon, but nothing too bad.  Overall, I'm pleased and so are they.  Her breakfast was normal, and she said happy birthday to one of her foods.  She's too funny sometimes.

At lunch, they started working on having Sarah chew her bites.  They went with a preferred food to make it easier for her - the beloved Elmo pasta (for those who don't spend a ton of time with Sarah, it's Earth's Best Tomato Soup with Elmo shaped pasta).  She had to chew just a small number of bites and swallow them within a decent time window.  She did great with this.  She loves Elmo pasta and doesn't have sensory issues with it, so it was no problem to chew it.  She normally swallows this whole, so I was a little nervous she'd do it again, but she listened to her therapist and did it right.  Go Sarah!  After that, I was brought in to do her usual lunch stuff on her protocol, and that went fine.

Dinner was the same plan, except she had to chew cooked carrot slices.  That went okay, I guess.  She didn't get all five bites down within the time cap, but it seemed largely due to struggle on her part and just not knowing yet how to move food around in her mouth correctly to chew it.  She spit out bites a lot, but some of it seemed kind of involuntary.  She managed to get two bites down, I think, and then it was my turn to feed dinner as usual.  That went fine.

Tuesday was more interesting.  We got stuck in traffic on our way to the clinic due to road construction, and Sarah whined most of the way there that I wasn't going fast enough.  I gave up explaining to her that I can't run over other cars after about the fifth iteration of that speech.  Then she was annoyed that D (her main feeder) wasn't there for breakfast.  She was around, just not feeding Sarah breakfast.  She saw the carrot slices, and was already crying before the meal started.  She asked for me because she obviously wasn't interested in this whole chewing idea.  I get it, but I brought her there to learn this.  It was tough to watch that and hear her crying, but I have dealt with a lot of that from her before.  Besides, I knew part of it was her general agitation that morning, and there isn't a darn thing I can do about that.  I think two bites went down again.  Maybe three, but I'm pretty sure it was only two.  She did fine at breakfast, and was introduced to cream of wheat.  She made some interesting faces, but got it all down basically without incident.

She had speech and OT that day too.  She did great at speech with a substitute therapist since her regular speech therapist was off.  She was really compliant.  I don't know if it was because it was somebody new or not, but I'll take it for whatever reason!  I think out of all the bites she tried to get her to swallow, only one got spit out. The poor kid had a huge meltdown when I went to take her to school.  The teacher was out sick and nobody told me that.  There was a sign on the door, but I'd already explained to Sarah that it was time for school, and she didn't understand that it was cancelled.  That was ugly, but I got her calmed down and distracted until it was time to go to the playroom.  OT went well too.  She has been dipping green beans in ranch dressing and eating them pretty well, so I'm impressed with that.

They changed foods for chewing at lunch to pancakes.  They also changed things so the therapist places the food more appropriately to help Sarah learn how to chew the food correctly.  That went a little better, but she still only got two bites down.  That's assuming I remember correctly.  At dinner, they did the same thing and I think she managed four bites.

Today was another busy day for Sarah.  So much therapy.  She had breakfast, and at least she didn't cry this time about being expected to chew.  It still didn't go well, though.  I think she got one or two bites down.  I fed her breakfast again and dealt with my first gagging spell.  I think a dry part of the cream of wheat went down funny.  I ignored it like I'm supposed to and finished the bite when she was done gagging.  The therapist was pleased with how well I handled it.  I already warned her I'm not likely to handle any vomiting episodes nearly as well.

At lunch, the chewing session essentially looked like a standoff.  She got one bite down and sat there stubbornly for the rest of the time.  So frustrating!  She did fine with me, though.  It was kind of funny, though, she was tickling D's arm during the standoff.  D said it was hard to keep a straight face during that.  I don't know how she does it, but I'm so glad she does.

OT and speech went well today, although speech was a lot tougher.  We may have figured a way to help get her to swallow her bites, though.

She did well at school today, too, according to the teacher.  She also told me her next days off in case Sarah gets scheduled for school when she's not there.

At dinner, they changed their protocol for the chewing session, and it seems to have worked.  She got all her bites down, and only really refused the first.  She spit the second one once (I think, but may be remembering wrong at this point), and accepted the rest.  They are really helping her place the food correctly throughout the session so she can learn to chew it correctly, and I'm hoping that is why she did better.  Her therapists and I have felt a lot like her problems right now are just lack of understanding of what to do with food that requires chewing.  Hopefully if she learns what to do, it won't be so scary and difficult and she'll get the hang of it sooner rather than later.  She was within forty seconds of the time cap when she got the last bite down, but that suits me just fine.

We headed home briefly and then to dance class.  Sean had a better week, so that's good.  Sarah was fine, and that's even considering the person who usually helps her was out sick.  Good for Sarah!

So far my attempts at getting to the gym have not gotten past the "I should go, oh never mind that's too difficult."  I'm to the point where I've realized the free bus is WAY too much trouble.  If I can get a day where Sarah doesn't have a ton of therapy, I can probably go there in my car and just park.  I just hope the garage at the downtown location isn't terribly full.  There's another city location that is just a bit further away.  Maybe I'll hit that instead.  It might be worth the extra drive to not deal with the stress.

Sunday, February 19, 2012

Days 21-22 & Weekend Update

Slacking again!

If I could just update from KKI's computer, I'd have this blog updated so much more often.  Oh well, not much I can do about what the network folks decide to block and not to block.  I guess I should just be happy I have computer access and free wi-fi available to me and quit griping.  I should also feel fortunate Sarah's in the outpatient program and that we're local, so I can take her home every night and get to our normal family life.  Or whatever version of that exists right now.

So...Thursday and Friday I fed her all of her meals.  I believe it was Friday they started watching me from the "secret room."  Both of Sarah's feeders say I'm doing a great job with her protocol.  That's good to hear.  I'm about 99% sure that Sarah knows there is a room and people watch from there.  The little goof was looking over at the mirror that's really a window and making faces and I am pretty sure I heard her mention both feeders' names at one of her meals.  I ignored the comments, though, and continued the meal.

Sarah had speech on Thursday and did well.  It was the first time I can recall seeing some serious effort on her part to eat some crumbs.  They were working on dried bananas.  She is starting to slowly get the hang of moving the crumbs around in her mouth, but she isn't fully coordinated enough to always get them to go the right direction.  Some of the crumbs ended up coming out, not because she was spitting, but because she ended up moving them out instead of down the hatch.  There was spitting of the crumbs toward the end of the session, too, but that's happening less and less.

I also got our first "weekend kit" sent home for me to feed her on her protocol at home.  It was a bit of a scary idea, but she's done so well with me, they predicted she would do very well.  So far, they are right.  Sarah has tested me a tiny bit, but she's figured out that I'm sticking to the rules at home.  I think Sean wanted me to do the protocol on him after Sarah's breakfast or lunch yesterday, I forget which, but I didn't want to start that habit so I didn't.  I have to admit was awfully cute, though.

I am getting along great with the other moms right now in the parent room.  The past two days at the clinic, we have all gotten into these really fun chats about all kinds of things.  It's funny.  I think we scared off the grandfather of one of the kids.  We were all running our mouths, and he walked into the parent room and proceeded to go in the opposite direction.  Ha ha! I don't blame the guy, but it still struck me funny.

Oh, and Friday, Sarah had a major tantrum at KKI.  I wanted her to try and go to the bathroom.  She's had accidents a few times at the clinic because she's insisted she didn't have to go to the bathroom, and then there's a huge puddle.  I told her to try, she threw a fit.  I've been told by the staff plenty of times not to give in during these situations.  Well, Sarah put on quite the show.  I think most of the Baltimore area heard her screaming, so of course it was quite the spectacle.  I kept my cool, though, and once she'd sat for 30 seconds (she didn't go, but that's fine, I just wanted her to TRY), I let her get up.  I walked out of the bathroom and Sarah's main feeding therapist was there.  It was nice to hear from her I'd handled it perfectly.  I really hate when Sarah draws so much attention, but I guess it's nice to hear from the staff here that I'm doing things correctly.

With a lot of help from the staff, I seem to have broken Sarah of her need to use her special potty seat everywhere.  That is a huge help! I hate carrying the stupid potty bag everywhere, and I'm pretty sure my big kid is nearing the weight limit for that thing.  She is doing well, though, and no longer asks for the seat.  She even went potty just fine for Daddy on Saturday at hockey.

I got the paperwork for the gym that's nearby last week, but I don't know that I feel like paying for another gym right now.  The gym where I already have a membership has a downtown location that I can reach by the free bus.  It will take longer to get there that way, but it just seems to make a bit more sense to use the gym I'm already paying for.  Rob said it was okay to use the other one, but he'd really rather I use the one where I already have a membership. I just hope I can block out the time to do so.  I'm probably going to take my gym bag over to KKI a few days this week and see if there's a good time block for me to go.  Sometimes the way her therapy is scheduled doesn't permit it.

I got the great opportunity for some "Mommy Time" last night.  I hung out with some super awesome mommy friends and spent my time eating some awesome food and laughing very hard.  I got there late because I had my dance class, had to feed Sarah, etc., but I got there.  The last time I went to a Moms' Night In, my schedule was so crazy, I got there when people were leaving.  Such is my crazy life, but at least this time I got plenty of time in to spend with my friends.

Today, thankfully, my only commitment is a little birthday party for my youngest brother.  Sarah actually ate a few bites of cake at his party last year.  We'll see what she does this year.

Wednesday, February 15, 2012

Day 20

So this is the half-way point for us.  Sarah is eating some higher textures, is generally compliant during meals, and seems to have calmed down in the playroom.  Not a bad day, really.

I think, hope, anyway, that I have kicked whatever bizarre bug I had the last few days.  I felt a little off this morning, but I feel fine now and have since mid-morning.

They were going to try cream of wheat for breakfast, but decided to hold off.  I suggested also trying grits (even though I think they look disgusting, but I feel the same way about cream of wheat), and they are going to try those at some point too.  There's a diner near our house that serves them and we can easily order her a bowl of them.  Anyway, I sat in the room during her breakfast, but didn't feed it to her, and she was fine.  A little bummed that D (her main feeder) wasn't around, but she was happy to hear that D would be around for lunch and dinner.  She loves B (her secondary feeder) too, so it wasn't like she was heartbroken either.  It is really cute how much she just loves her feeders, though.  Breakfast went very well.  I don't remember what she ate, but three out of the four foods were a higher texture, the other was a puree (yogurt, I think).

During Sarah's school time, I got trained in her feeding protocol.  It wasn't really much of anything I didn't know because I've watched all but one of her meals (I was in her steering meeting for one of them).  They went over some specifics of a few things they do, and talked about what to ignore, what to encourage, etc.  There were a lot of possible situations they brought up, most of which I'm supposed to ignore, and that kind of freaked me out.  Not to say I expected most of them, at least not at this point, but yikes on a few of them! I'll cross my fingers and hope to heaven most of those don't happen.  Overall, she's a much smarter kid than she is stubborn, so hopefully if she sees she isn't going to get away with any craziness, she will knock it off.

Sarah had speech today, and I watched from the hidden room.  The speech pathologist asked if it was okay if a student observed the session, and I said that was fine with me.  She is doing better with her therapy overall, but she spends a fair amount of time spitting out her crumbs.  It's really hard for her, but she has got to learn to get the food down or she isn't going to be able to move up.  I'm sure they'll figure something out soon to help her keep the food in her mouth and get it down.  It is sad sometimes to see my daughter have to be taught something so basic.  I have to say, though, I really admire her team's patience.  They do a great job getting what they need out of her.  She still fights occasionally, but she knows she really can't play them.

I fed Sarah lunch, and was a little nervous I was going to mess up the protocol.  I know I made a few little mistakes.  Her therapists said I did great, though, and didn't mention any mistakes.  I was glad of that.  They even told me when we went over the protocol to keep going and not to freak if I made a mistake or really even acknowledge it or that was going to cause problems.  That's going to cause more issues than making a small mistake.  Sarah did well with her lunch, though, and accepted all her bites from me.  The little goof thought it was pretty funny that Mommy was feeding her.

I fed her dinner as well, and I did better.  She tested me a little, but they said I handled it perfectly.  She figured out after a few bites of testing me that I was going to do the same thing her feeders do and she gave up the fight.  The only other little problem we had was one of her foods was kind of runny and it was getting messy.  I had to give her smaller bites of it so it wouldn't go everywhere.  I think she was tired of that food before we finished it, and by the end of the meal it was all we had left (normally we alternate foods each bite).  She got through it though.

Tonight was dance class for both munchkins.  Sean had a rough night and was horribly unfocused.  I suspect it may have had to do with the new school this week.  Maybe next week he can take a nap after preschool and be refreshed for dance class.  Easier said than done, of course.  We'll see.  Sarah did pretty well until it was time to go.  We were all set to get coats on and go home when she peed herself.  Ugh.  Never a dull moment.  So I changed her clothes real quick, after explaining to her that we do NOT strip in public (she tried to strip in the waiting room), and then we got to leave.

Now for some photos:

Craft at school last week

Her hair at the end of the day on Friday, courtesy of Miss J in the playroom

Tuesday, February 14, 2012

Day 19

So, we missed yesterday.  I wasn't feeling well, and neither was Daddy.  I guess the bright side of the whole thing was I got to take Sean to his first day at his new school.  He did great and I feel like he is finally in the right place.  When I picked him up, there were no complaints about his behavior or anything.  Sean was even able to tell me he played outside and he'd had crackers for his snack.

Today was a bit of a transition day for Sarah.  They're going to start having me do some of her feedings so she learns she has to eat properly for Mommy (and eventually everyone else), not just Miss D and Miss B and anyone else employed by KKI.  I sat in on her lunch and dinner feeds, and she did fine.  At lunch, she looked over at me twice, but ate fine.  At dinner, she was much more excited, and spent a lot of time singing and acting goofy, but she still ate everything well.  They have upped her texture a little on some of the foods too, and I think that is a bit of a challenge for her.

I talked to the staff about the behavior problems in the playroom and suggested a sensory break or two.  It seems she is misbehaving more often when the room is busier and louder, and I'm wondering if some of it may be due to being overstimulated.  I don't know how she did today because I didn't ask.  I'm still a bit under the weather, and by the time dinner came around, I was pretty tired and not feeling up to hunting down the playroom staff to go find out.

She had OT as well, and is tolerating the higher textured foods better in her mouth, but spitting about 3/4 of it out.  School went very well, and she made a cute craft.  I'll try and snap a picture and post it.

Anyway, I am pooped and we haven't even had dinner ourselves or put the kids down for the night.  No big Valentine's Day plans here.  I'm not feeling 100% yet, and neither is Daddy, so we'll wait on it.  The kids got some cute stickers from my mom, and Sarah got some stuff from KKI.  She even got to pick out a present for Sean.

Saturday, February 11, 2012

Days 17-18

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.

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.

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.

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.

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.

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!

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.

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.

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?