Thursday, December 27, 2012

Christmas Update

So, I'm the worst updater ever.  I can't believe it's nearly four months since I updated.  Oops.

We've been busy here as usual.  I feel like I spend my days just running the kids from one activity to another.  I'm just glad I had the sense this session to register Sean for a Tuesday morning swim class at the Y.  An evening class would be next to impossible, and the weekends are just so full most of the time.  It makes for a bit of a rush to get him home, fed, and on the bus, but I manage.  Sarah has her own swim lessons, which of course are at a different time and place.  Both kids dance, but that's back-to-back at the same place.  Both kids get private speech therapy at a local college, at different times.  For the moment, I'm okay with that.  Once Sean goes to kindergarten, I'll try and see if they can put the kids at the same time.  Sarah is playing her third season of hockey, and she's doing great at it.

Sarah is eating okay.  I'd love to say she's doing great, but overall she's just eating okay.  Breakfast is a struggle.  I got her eating macaroni and cheese for breakfast.  Unconventional, I know, but something had to give because the mornings were just a bunch of tears.  Hers and mine.  I managed to get her to eat oatmeal yesterday, but it was a struggle.  She got some new DVD's for Christmas, and they seem to help more with reinforcing proper behavior.  She definitely still loves her Chef Boyardee foods, and eats them without complaining.  Sometimes she's a tad picky about whether it's spaghetti or ravioli, but generally, she eats them fine.  She tried a few bites of Thanksgiving dinner.  She didn't like turkey (not surprised about that), but she did eat several bites of my mom's sweet potato dish.  I got her to eat one bite of sweet potatoes and one bite of carrots at Christmas dinner.  I think she would have done better with the carrots had they been canned and not frozen, but I'm happy she made an effort.  Pizza is still generally a hit with her, but it's so difficult for her to eat right now.  She takes a very, very long time to eat one slice.

Oh, and if anyone didn't get the memo, October seemed to be "crap on our family" month.  Seriously, it was probably the worst month of my entire life.  My husband and sister-in-law left on the 1st to be with their mother.  She'd been in hospice for a little over a month, and we got the call that they'd better come over and see her right away.  My mother-in-law held on until the 6th, when she passed away peacefully in her home.  It was a horrible week at home for the kids and me, and even worse for my husband and sister-in-law.  The kids and I managed okay, but it was hard and the nights were especially difficult for me.  I just tried to keep things as normal as possible for the kids so I didn't stress them out too much.  The following weeks were horrible too.  Not only were we grieving, we also seemed to catch every germ within a 10-mile radius.  Sean got hand, foot, and mouth disease, Sarah ran a fever with no other symptoms later that week.  The week after that, Sean threw up twice unexpectedly and then slept for three hours.  He was fine after that, and mad that "mean mommy" made him eat Pedialyte popsicles and wouldn't let him have anything else.  Sarah went home early from school the following day, but just seemed tired for about an hour and fine after that.  I got a sinus infection, and my husband got strep early the following week.  My sister-in-law was sick for nearly a month, and ended up with either bronchitis, pneumonia, or sinusitis.  The doctors weren't sure which.  The final Saturday of October, we took the kids to Sesame Place again, just to have at least one fun memory for the month.  Oh, and then Hurricane Sandy hit here.  We were lucky that we didn't lose power, save for a few small flickers, and didn't sustain any damage.  Rob get a few extra days off of work because his building was without power for a long while.  We took the kids to a local mall for trick-or-treating instead of my parents' neighborhood like usual (because mine has very few houses who participate for whatever reason).  It was cold out, and I didn't want to risk anyone getting sick again.  We ended up on the news, but didn't find out until after it aired.  I couldn't find any video online, so too bad for us I guess.  Also, I had the misfortune of having one child back at school the Wednesday after the hurricane and one who didn't go because the school didn't have power.  Since my kids LOVE school, the one who didn't have school was mad at the one who did.  Ugh.  At least we got to see Sarah in her Halloween parade at school without worrying about Sean's dismissal.  The kids dressed up as Sonic and Knuckles from the Sonic the Hedgehog video games.  They were so cute!

November was slightly better than October.  Sean got pink eye and a sinus infection and was under doctor's orders to stay home from school for THREE DAYS.  I was NOT happy.  At all.  I'm getting rotten letters from his school regarding his attendance.  I'm sorry he's been sick so much.  Geez.  I really don't think missing that much pre-K is so horrible.  He's missed 9 days this year, which I agree is ridiculous, but we're just unlucky, not bad parents.  Anyway, I ended up with a rotten cold in November, and my husband got bronchitis.  I'm pretty sure Sarah was sick with something at some point, but maybe not.  We hosted Thanksgiving as usual, and it was a small group for us.  I think we had a total of ten people.  It was tough for Rob and his sister, especially, since this was the first holiday after losing their mother.  Their stepfather had other plans for Thanksgiving, so he wasn't even there.

December was germy too.  We got a stomach bug, and a cold.  Sarah had a fever one night, so she missed school the day before her Christmas party.  She was MAD, but at least it broke in time for her to go to school the last day before Christmas (errr...Winter) Break.  Everyone was healthy on Christmas, other than a cough or sniffle here or there.  The kids really understood Santa this year.  Sean wasn't afraid anymore, and both kids understood that they were supposed to ask for something.  We had to explain to Sarah that the gifts aren't instant, but she got the idea after her third (yes, third) Santa visit.  We saw Santa at the mall, then we saw him at Dinner with Santa at Sean's school, and then at Sesame Place.  The kids both got the gifts they REALLY wanted, so that was nice for everyone.

Sarah got chosen for the Sesame Place parade again, this time outright.  Last time, she was chosen because Sean refused.  I got video of it, and I thanked the person who picked her profusely.  She's usually "too big" to participate.  I get that, but the performers don't realize she's almost 8 physically, but closer to 4 or 5 mentally.

Here is Little Miss in the parade.  She's the adorable one in a purple coat with a pink hat.

I think that's enough for now.  I hope everyone had a great holiday, whatever you celebrate!

Wednesday, August 29, 2012

Just an update

So, some good, some not so good here.

- Sarah started second grade this week.  She has a new teacher, which is actually unusual for her program.  The previous one is moving out of the country, so we have somebody else now.  So far, Sarah seems to like her.  I liked her quite a bit when I met her last week at "sneak a peek at your seat" day.  I'm hoping this is a great year for her.

- Sean starts pre-K next week.  He would have started this week, but his school does a gradual entry.  In my opinion, it's too gradual.  I get that there are kids who have never been to school, but how on earth is a half hour with a parent one day and an hour with a parent another day going to prepare them for a regular 2 1/2 day without a parent next week?  We had our first day yesterday, which was more of a parent orientation than anything.  He was nervous, but he was fine once we entered the classroom.  He happily went to the classroom assistant and did a craft while I sat with the parents and went over everything.

- Sarah has gotten more adventurous with her food.  She has taken more interest in pizza lately, and she is eating some regular textures in her meal.  She loves diced cucumbers dipped in ranch dressing, pretzel sticks, and today she tried peas.  She's had fork-mashed peas before, but she likes them at a regular texture too.  She seems to find utensils unnecessary, though, so I sent off an e-mail to her feeding therapist to see whether or not I need to address that.  At the moment, I'm not stressing too much over it.  I think we just won't be serving those to her in public.  It is nice, and I'll admit a bit weird to me, to see her actually chewing food.  She had been getting around it with fork-mashed food, but she can't with regular textured food.  I am still dumbfounded to see her put food in her mouth and chew it.  She's slower than kids her age should be because it's still so new to her, but I'll take it.  She couldn't do it at all before the clinic, so I'm really proud of her!

- Sarah has gotten SUPER brave lately in general.  We went to Sesame Place last week and she rode everything.  The roller coaster, the flying fish, the swings, the teacups (with Daddy and Sean because Mommy HATES that ride), and anything else she could.  This time last year she couldn't work up the guts to ride the flying fish, and this time she wanted to ride it by herself.  Sean was too tiny to ride without an adult (or teen) companion, so I made her ride with me.  She was mad, but got over it.  There were no tears over rides, and she did great.  She got to hug Elmo, Abby, and Super Grover too.  There was a meltdown in the bathroom I'd like to publicly apologize to the entire Philadelphia area for having to hear, but otherwise she was really good.

Not So Good:

- Sean's school moved him from morning pre-K to afternoon pre-K at the last minute.  I was furious, especially because I've had to re-vamp quite a few things.  The kids go to different schools, and they get out at the same time.  They are about 20 minutes apart if I had to guess, so afternoon activities are becoming difficult to schedule since I haven't mastered the art of being in two places at once.  I tried to see today if I could pick Sarah up and be home in time for Sean's bus (since he wasn't on it yet due to gradual entry), and I arrived when his bus did.  That's cutting it too close and I'm not about to risk it.  If I have to pick Sarah up, I'm going to have to do it early.  Anyway, the reason they moved Sean was because of the educational goals on his IEP.  The 4's special ed class only meets in the afternoon, and it made more sense to put him in the afternoon for this reason.  I get that, but why nobody figured this out before last Friday is beyond me.  He's learned so much over the summer that I'm wondering how much he'll need the special instruction anyway.

- Breakfast for Sarah has become World War III.  Sarah seems to not like oatmeal too much, which I can handle, but she doesn't like any other breakfast foods either! The booger asks for pancakes, I think that's likely because Sean eats them frequently, and then acts even more ridiculous than she does with oatmeal.  I can do the protocol until we're both blue in the face and she just doesn't care.  I think she actually thinks up ways to avoid oatmeal in her sleep.  Anyway, her psychologist (not part of KKI at all) suggested I give up the battle and just give her a non-breakfast food (sorry, Dad).  So I think tomorrow's breakfast will be mac and cheese.  That should make breakfast more peaceful.

Anyway, time to share a few photos.

having some pizza the other night

waiting for the bus on the first day

more waiting for the bus

trying to get away from the annoying Mommy with the camera

riding a ride on our recent vacation

Tuesday, August 14, 2012

Follow-up #2

So, I came in with some questions.  Thankfully, Sarah is doing pretty well overall.  She's growing well, and is generally compliant during meals.  We have successfully added mac and cheese (only Chef Boyardee or Velveeta, she hates Kraft because it's so dry) and creamed corn to her list, both at regular texture, and the team was pleased.  It was nice to say hi to people we hadn't seen in a while as well.

Anyway, we are struggling with breakfast.  I don't have a preferred "go-to" main course for her right now.  Oatmeal is pretty touch and go.  Pancakes, she thinks she likes, but struggles with every time.  This morning she begged for pancakes and it was AWFUL.  I think part of the problem with pancakes is the texture, and the way KKI got them down for her, they aren't remotely like normal pancakes.  I asked about cutting normal pancakes up really small and having her dip them in syrup.  They liked this idea and suggested I present this at snack time, one bite at a time.  They said french toast sticks might be easier.  I don't have any of those in the house, but she is good with a fork and might be able to manage with pancakes.  We'll see.

They said we can start adding regular textured foods to her meals if she is doing well with them at snack time.  Since she DEVOURS cucumbers with ranch dressing, I think a small volume of those might go into her meal sometime soon.

I need to call her allergist soon and see about introducing eggs since her skin test showed a weak positive.  If she can eat scrambled eggs okay and decides she likes them, that's another breakfast option.

So, it looks like we have some experimenting to do in the future.

For those keeping track, Little Miss is 4 ft 1 inch, and weighs 56 pounds.  What a big girl!

Monday, July 9, 2012

It's been too long...

I guess part of it is that there really isn't much to tell.  For the most part, Sarah is eating well.  She isn't really giving me a hard time most days, and nothing much is going on.  She finished school on June 8, and today she started summer school.  Or, "extended school year", specifically.  Four weeks of mornings with only one kid.  Pretty nice for me.

Summer has been relatively uneventful.  Just hanging around, going to therapy, of course, and we did spend two days at parks.  One was a local park with a feeding clinic friend, and another was at Sesame Place, Sarah's favorite place in the world.  The kids really love it there, and it's worth the two-hour drive since Sarah has such a nice time.  She got to dance in the parade when we went, but the little booger deleted the video from my phone before I could get it off the phone and uploaded anywhere.

I did have surgery two weeks ago, but it was just a hernia repair.  I'm still a tad sore from time to time, and I have to remind myself not to strain myself, but I'm recovering well otherwise.

Sarah is on a water-drinking kick.  For anyone who knows her, that's kind of new.  She would normally only drink it begrudgingly.  She still loves her milk the best, but she seems really into drinking water now.  I don't know why that's so interesting to her now, but we're going with it.

She has been very independently lately.  She likes to dress herself, and heaven forbid anyone open a door for her.  She will slam it shut so she can do it herself.  Drives me bananas, but I suppose it's better than her refusing to do anything for herself.

Oh, and both kids started swimming lessons recently.  Sarah is going to a special needs place and loving it.  Sean is at the Y and is terrified.  He is getting better, though.  All I ask of Sean is that he listen to his instructor since I know he's going to be scared anyway, and he did better at his last lesson.  I hope he does well tonight.

Quick billing vent.  I finally got a bill for our stay.  Okay, fine.  We were supposed to be on a payment plan for our portion of the bill, which thankfully wasn't a ton compared to what we would have had to pay had we lost our lawsuit.  I called because it was for the full amount, and they had "no record of us being on a payment plan." Um, seriously? Anyway, they were really nice about it and we got ourselves on a payment plan, but what a pain in the butt.  I would have made payments earlier, but I wasn't going to be randomly send checks that would land in oblivion.  Ugh.  Is it just me, or does everywhere you go for anything health-related seem to have people screw up the billing?

That's all for now.  Waiting for Little Miss to get off the bus.  I hope she had a good day.

Saturday, June 2, 2012

Recital time!!!!

Okay, feeding is going well overall.  We're still having the occasional battle, but we seem to be in a groove lately and are rarely fighting negative behavior.  We have added creamed corn to her food list.  She's making more of an effort to move food around her mouth, and she enjoys her regular texture snack.  She'd prefer it to always be cucumbers in ranch dressing (and we can hold the cucumbers if we like, ha ha!), but I can generally talk her into at least taking a bite or two of other things.  I find it helps a great deal if her brother is having a snack at the same time because he's a great model for her, although the boy doesn't like ranch dressing at all.  Seriously, he spit out the cucumber after he dipped it.  Too funny!  Her daily snack isn't as daily as I'd like, but she had an ear infection early last week and was too miserable to deal with chewing.  She is okay, now, though.

What I really want to talk about, though, is the dance recital.

Wednesday was our dress rehearsal.  I was stressed big time getting there.  I'd picked Sarah up from school because of how late her bus drops her off.  I stopped at the Wendy's right by her school to pick up dinner for Sean and me, and I had the worst time at the drive through.  There was no line, but the person at the drive through couldn't hear me.  I don't know if the speaker wasn't working right, or she doesn't hear well or what happened.  I was pretty frustrated, though, and I ended up having to give my order THREE times.  I ended up with the wrong drink, but I'm surprised that was the only thing wrong with my order.

Anyway, I ran around like a crazy woman trying to get the kids ready, bathroom visited, Sarah's hair up (just a ponytail this year, I decided) costumes packed, dance bags double-checked, camera bag packed, car loaded. We did not get to the rehearsal on time, but neither did most people.  Thankfully we were there in plenty of time to start.  I got the kids in costume okay, and that went fairly well.  The dress rehearsal, as usual, was a bit rough.  Dances had to be repeated (although, for me, only the family number, understandable considering it was the first time we've all performed it together).  However, the best part was, SARAH DID HER DANCES!!!! She always dances with an instructor on stage, but this year she really just need one for focus.  She did so well at the rehearsal I was scared to say anything here or on Facebook because I didn't want to jinx it.

It was the usual screaming and running around to get everyone ready for the recital last night.  Add the horrible storm going on outside, and it was extra stressful.  We still got to rehearsal earlier than planned, which was good because Little Miss was being a major pain about putting on her costume.  She was in major bossy mode, and wanted to bark orders at her brother, rather than just listen to Mommy and get her darn costume on.  I was furious with her, and at one point I said to her "What needs to happen to get you into your costume?" UGH  Finally I told her she couldn't wear her crown (the headpiece) without the costume.  That seemed to satisfy her.  Good heavens, had I realized that, I would have opened with the crown argument!  Of course, I ran into the oh so fun "nosy kid" issues last night.  A child from my son's class who doesn't really know Sarah and her issues asked why she was wearing a pull-up (we normally use diapers but we're all out and I snagged a few pull-ups from my parents' house the other day).  I normally don't put her in pull-ups or diapers much, but I was not risking her having an accident during the recital.  Anyway, since the kid was only 3 or 4, I went with the simple explanation.  I told her it was because I didn't want Sarah to have an accident.  I was happy that she was satisfied with the explanation because I was not in the mood to discuss further.  Don't get me wrong, I don't have a huge problem with the kid asking, she's just a little girl, but sometimes I just hate having people notice.  Thankfully the kids who are actually in Sarah's class are really good with her.  They're pretty helpful and seem to understand her.

Later that night, Sarah ripped the flowers off the front of her costume.  You couldn't really tell on stage, and to be honest, whatever.  I wasn't thrilled about it, but there wasn't anything I could do about it.  Seriously, though, other than refusing initially to put her costume on, that's about all she did wrong the whole night.  I can deal with that.  She was so cute when it was time to line up for the finale.  She was holding hands with this one girl, R, who is her age.  I'm not sure if they were told to do so, or did it of their own accord.  Either way, R has always been pretty helpful with her, and she and her sister N (also in Sarah's dance class) came to Sarah's birthday party.

Oh, and I won the "cool mom" award, I think, at least with the little kids.  I spent a fair amount of time Thursday printing out coloring pages of various characters to entertain the kids.  At the dress rehearsal, there were a ton of fights over coloring books, and I figured if we had a ton of different pages (and in popular characters), things would go much better.  I had Dora, Diego, Sesame Street, Wonder Pets, and Disney Princesses for the kids to color.  I think almost everything got colored, and I'm glad.

Sean did awesome as well!  He seemed kind of stage shocked at the dress rehearsal, but he was basically fine last night.  There were two kids (sisters) from his class last night that didn't show up to the recital.  I have no idea why, but I hope they are okay.  Anyway, he did very well in both of his dances, and even adapted to the missing dancers.  One of them was his partner for ballet.  Another girl was the other sister's partner, so at the last second the teacher told Sean and the other girl to dance together.  They did, which I think is pretty good for their ages (four and five).  He was so cute.  He wore this adorable dragon costume for ballet and let out a yawn just before ballet, and the whole audience just melted.  I'm importing the video right now, so hopefully I can get some of the video onto YouTube soon.  Anyone at the rec reading this, please order the DVD.  We work very hard to make it look nice, and the quality should be much better this year.  If you didn't order one last night, there is still time to go ahead and order it.

In other news, she has done great with her brother.  She's been getting things for him when I ask, and the other night, they traded v-readers.  It's this e-book reader they both have.  I was in the other room folding laundry, so I didn't hear the conversation, but I came back and saw they had traded.  I guess each one wanted the book the other one was "reading."  I wish I'd been present for that conversation.  All I know is there wasn't any screaming involved, and they proudly told me they were playing with each other's v-readers.

How's that for a happy blog update? :)

Wednesday, May 16, 2012

Update from yesterday's oral motor appointment

So, yesterday we went to KKI in the morning for an oral motor appointment.  I was frustrated getting there because the kids were a pain getting out the door, and then I hit several red lights on the way.  Add several stupid drivers and pedestrians walking/driving in front of my car, and we were late.  It was in a different building, just one block over, but the entrance wasn't where I thought it was, so that threw me off.  I also hadn't explained it to Sarah as well as I thought I had, so I had to deal with a whining, teary Sarah too.  She saw the building where we normally have appointments, and kept telling me to go there.  Anyway, despite the rough trip, we managed to get there in enough time to still get our appointment.  Barely, but I guess what matters in the end is that we still got our appointment.

It's a good thing, too, because Sarah did GREAT! We were asked to bring five foods that we'd decided would be a good idea at Sarah's follow-up appointment to try and see if we can up the texture of her meals.  Now, we are not yet changing the texture of her meals because her speech pathologist needs to discuss how our appointment went with behavioral psych, but I'm optimistic that there will be a change soon.  Anyway, we brought french fries (this kind, perfect for an appointment because they were microwavable), cheese (Kraft singles), cucumber slices, canned carrot slices, and a banana.  I also brought ranch dressing because Sarah LOVES to dip diced cucumber into ranch dressing.  She ate quite a few pieces of diced cucumber at my Mother's Day lunch at Outback this past Sunday and did very well with it. She chewed them well and didn't gag.

Anyway, so we spent a lot of time helping Sarah put the foods on her teeth, reminding her to chew them at least five times as it's still a habit of hers to swallow things whole, etc.  Her speech pathologist and I took turns helping Sarah properly place the foods in her mouth.  We had a few minor gagging incidents, but no vomiting at all.  She spit once or twice, and a few times the food fell out of her mouth because she moved her tongue wrong.  Overall, though, she did awesome!  She chewed for probably half an hour and didn't seem to tire.  She also seemed to really enjoy the food.

The recommendation is one snack per day of regular textured foods.  We're obviously not talking sourdough pretzels, or nachos, or peanut brittle (she's allergic anyway), but foods like the ones we brought.  We are to continue the oral motor exercises at least three times per week with the oral motor tools.  Once her meals are about half regular textured foods, we can stop using them.  I can handle that for sure.

As far as meals are going, it's still kind of touch and go.  Abby in Wonderland became a tad less motivating for her, so we changed DVD's again.  I got a few at the library, and oddly enough, she's hooked on this one.  It's awfully cute and has a lot of cute Cookie Monster videos, including "A Cookie is a Sometimes Food."  I find it pretty funny myself.  Anyway, she's lately declared war on oatmeal.  The problem started with me getting a generic brand.  This stuff is definitely thicker than what she's used to eating.  She'd been handling it okay, but I guess our latest box of it must not be going so well.  Add to it that she was pretty annoyed on Sunday that Daddy was feeding so Mommy could have a break on Mother's Day, and it wasn't pretty.  She had gagging issues with it Monday and Tuesday too.  So, I said to heck with it and bought the brand name.  Really, the savings isn't worth it if she really doesn't like it.  I'm picking my battles here.  Unfortunately, I think I'm going to have to be stricter with her to show her she's going to have to suck it up and deal.  She gave me a rough time this morning.  She wanted me to heat it up more in the microwave.  I'd been doing that with the other stuff, thinking that may have been the issue.  I gave in today (stupid and off protocol, I know), but I won't do that again as it didn't improve her behavior.  Then, it was her usual ridiculousness of refusing to feed it to herself.

On the bright side, though, we do seem to have gotten back some foods that were giving me a fight.  Green beans were causing an argument, and now she's doing fine with them.  Peaches were 50/50, and now she almost always eats them without fighting me.  Beef stew goes very well too.  I did a taste session on fork-mashed cheeseburger.  She did okay, but I don't feel comfortable putting it in a meal yet.  I did one on lasagna, and I feel that way about the lasagna too.  We've done a couple with creamed corn, and she's doing okay with it, but I think we need a couple more sessions before I feel confident enough to put it in a meal.

Oh, and for those keeping track, I'm STILL waiting on the e-mail with the protocol to deal with the self-feeding issue.  Tomorrow it will have been an entire month since our clinic appointment.

In non-feeding-related news, and this is NOT for the squeamish to read, Sarah has pooped in the potty TWICE in the past week.  TWICE!!!!  Thursday, she'd been gassy for a while, and I had meant to put a diaper on her.  I didn't get to it, but I caught her in a weird squat.  I asked her if she was pooping and she said "yes."  I asked her if she wanted to try and poop in the potty, and she said "yes."  I ran her to the bathroom at top speed and noticed she had only gone the tiniest bit in her pants.  I sat her on the potty and figured we'd see what happened, but didn't hold out much hope.  We'd done this before, only to have nothing happen and then she'd go in her pants or a diaper five minutes later.  I saw she was trying, but struggling.  I remembered from training her brother, that a stool under her feet sometimes helps.  I slipped a stool under her feet to support them, and started to coach her.  I said "Push, push, push with your tush!" I'm sure anyone who doesn't have kids likely thought I'd flipped my lid, but whatever.  It WORKED, though!  She did it and was SO proud of herself.  I showed her when she was done and told her she'd done such a good job and that Mommy was so proud of her.  I cleaned her up and let her pick a prize from my stash of dollar store stuff I keep for these occasions.  Well, these and for lost teeth.

She didn't poop again until Monday night.  She got one out of four poops in the potty (I think she'd been a bit backed up and was clearing it, so I guess it's understandable), but I'll take it.  She got another prize for doing it.

I don't think we're going to push the bowel training too much until school is out, but anytime we can get her into the bathroom when she has to poop, you'd better believe we're going to do it!

Oh, and dance pictures came in.  Here they are.  I took the pics with my phone and used an app to make it look like I scanned them, so the scans could look better.



All three of us (sorry for the blur and crappy colors here) Note: Sarah is in her tap costume here, but refused her wear her tap shoes.  Ha ha! I love her pose and expression here, though.  It's too cute!

Thing 1 and Thing 2....err...Sarah and Sean together

Tuesday, May 8, 2012

The latest here....still doing okay

A little of this, a little of that.  That's kind of how meals are right now.  Some meals she does great, others she decides she is going to throw a fit.  Usually her refusal is not self-feeding, but sometimes she takes it further.

Anyway, so we have some foods that generally don't cause a fight.  I feel like we are slowly adding to the list.  Any Chef Boyardee, peas, carrots, a mix of those two, mixed vegetables, yogurt, pudding, applesauce (any kind now, she used to only go for the flavored kind), and now peaches.  Every once in a while she gives us trouble with peaches, but she's gotten pretty accepting of them lately.  I'm working on getting her to accept more main dishes, but we'll see how that goes.  I'm thinking about re-introducing lasagna tonight, but we'll see how that goes.  I've been working with her on corn lately, and she's not accepting it well enough for me to feel comfortable putting it in a meal.

It's odd, really.  I started the corn because she's been asking about it.  She was telling me last week or so that she wanted corn and peas.  She started whining at dinner that night for them, and I wound up showing her that she was eating them in her mixed vegetables.  Seriously, I got the can out and showed her the picture.  I identified the vegetables in there for her.  I told her it had peas, carrots, corn, and celery.  There were lima beans in there too, but she doesn't really know what those are.  That made her more accepting of the mixed vegetables, and less whiny about the corn and peas.  Anyway, another time last week I caught her trying to pick the corn out of her mixed vegetables with her fingers to eat it by itself.  I looked away for a second, and there she was.  Goofball.  I told her to eat with a spoon, and she was fine.  So, I tried giving her corn in a taste session.  It was the regular kind that I tried to fork-mash.  That didn't mash very well for me.  She handled it okay for her five bites, but when I put it in a meal, she had an awful time with it.  I tried creamed corn with her last night.  She did much better, although she made quite a few faces.  I think we'll do a few more taste sessions to make sure she's okay with it before we put it in a meal.  She seems to really want to eat corn, but it's a tough food for her.  I'm sure she'll figure it out.

Saturday night was a nice night for us.  We got to go out to dinner without the kids, thanks to my sister-in-law. Sarah even ate nicely for her.  We gave her slightly easier food, and Sarah did great.  She was funny, though.  She was "coaching" her aunt.  She would tell herself to take a bite and then praise herself.  I guess she forgot that her aunt knows how to feed her.  Ha ha!  We had a nice dinner at a sushi place, and enjoyed some uninterrupted conversation.  Even if a fair amount of that conversation may have been about the kids.

Sunday, we had the ever so fun experience of Sarah deciding she was REALLY ticked off at us for not serving pudding or yogurt with her breakfast.  She sobbed and whined through the meal and refused to self feed all but the first few bites.  It was ugly.  Thankfully, she was over it by lunch and fine the rest of the day.

Sunday night, we had the family over for my birthday, and Sarah ate a bite of cake and fork-mashed the rest of it for herself.  Too funny!  She was SUPER excited to see her cousins.  She was jumping up and down with excitement when they showed up.  All the kids played pretty nicely together, and we all sat watching a ridiculously long Oriole game.  It was history in the making, though, and I'm kind of glad I watched it.  Well, as glad as someone who doesn't normally follow baseball can be.

In Sean news, I had his IEP meeting this past Wednesday.  It was really nice and I was pleased with how things went with his team.  I felt like the staff was really good about telling me the different options for classrooms for him, and we got a good one for him.  His teacher he'll have in the fall seems really nice, and we have an option to move him to a different classroom in the same school if it doesn't work out.  He finished his preschool program, although they do have a field trip tomorrow.  It's optional, but Sean and I are going.

I suppose that's about all that is going on around here.  Just busy with the usual.

Saturday, April 28, 2012

Going better today, Yay!

So, after my previous rant, things seem to be better.

At breakfast, she protested self-feeding a couple bites of oatmeal.  She was watching a DVD she hadn't watched in several months and likely forgot that she owned.  Anyway, after realizing she wasn't getting her DVD unless she fed herself, she gave up the fight and fed herself the rest of the meal.

I thought we were doomed at lunch.  She saw the dishes come out and began to sob and protest.  She even threw her special plate into the sink, which thankfully is unbreakable.  She was telling me "no 'take a bite', no no no, no thank you."  Part of her protocol is prompting her with "take a bite," so she was essentially telling me she had ZERO interest in doing the protocol.  She was curled up in a ball on the kitchen floor crying her eyes out.  I even told Rob to get the camera ready because I figured we'd have something interesting to send to KKI.

I'm so glad to say I was WRONG.  I had the foresight to bring up a DVD she hadn't watched yet.  I got it from the library the other day, but she didn't know about it.  I asked her to choose her video and she happily chose the new one.  She was so interested in the new movie, she forgot about her protest.  I also gave her food she tends not to fight me about eating, and I'm sure that was a bit of a help too.  I probably could have given her some less preferred stuff too, but wasn't going to try it after that protest.  Anyway, she had 100% compliance at that meal.  Not a single protest at all.  I had to prompt her a few times because she was so engrossed in the DVD, but she self-fed every single bite without so much as a hint of negative behavior.

I didn't feed her dinner because Rob did.  That was the plan since I was at dance class and she has gotten an attitude about her.  I'm generally the one feeding her and she pitches a fit if Rob tries.  I told her before I left for dance class that Daddy was going to feed her dinner while Mommy was at dance class, and she was okay with it.  Thank heaven.  Rob said she did great.  No negative behavior at all.  He gave her easier food as well, but that's okay.  Her case manager said right now it's okay to focus on foods that give us less of a fight while they review the videos and try to work in an outpatient visit.

For now, we have the Abby in Wonderland (click the name for more info) DVD to thank for her behavior!  So glad the library had it.  I'm sure I'll be hitting up the library a lot in the near future for more DVD's for mealtime.

Tomorrow, we have a huge family event in the middle of the day, so that's pretty busy for us.  We aren't even doing her protocol at lunch because we don't want to risk any craziness in front of a ton of people, including quite a few we don't know well.  If her breakfast goes well, I may add one food to dinner that's a bit less preferred or even try a taste session of a new food and see what happens.

Friday, April 27, 2012

Way behind on blogging, and the regression continues....

So, things have been rough here.

Sarah continues to fight me on self-feeding.  It's frustrating and she drives me crazy with it.  I'm tired of having her decide she's not going to feed herself unless she loves the food.  I sent an e-mail to her case manager and we're working on it.  I have yet to get the e-mails from behavioral psych I was supposed to get, but her case manager and feeding therapist are working on it.  Hopefully two people after her might actually get her to e-mail me.  I understand Sarah isn't her only patient, but what I don't understand is waiting FOREVER to get an e-mail.  If it was going to take more than a day or two, she should have been up front with me about it.  Rant over.

In other news, Mommy and Daddy got to be adults earlier this week.  We had a Certifikid voucher (think Groupon, but a different company) for an overnight stay and wine tasting at a bed and breakfast.  Well, the wine tasting never happened because the wine house was mysteriously closed, but our night at the bed and breakfast was nice.  We also had a wonderful dinner at a really nice restaurant.  It was nice to eat a good meal without small children.  The service was excellent, and we really took our time.  The breakfast at the bed and breakfast was lousy, but oh well.

We have been pretty busy here.  Saturday morning, the kids went to Parents' Day Out with the ARC of Baltimore.  Sean freaked out when we got there until we told him he could play with Play-Doh.  Sarah was fine the whole time, but unfortunately she took scissors off the craft table and took a chunk out of her bangs.  Just hours before her dance costume pictures.  UGH!!!!  Good move there, Sarah! I was not happy with her.  I asked her teacher to please do her best to hide it for the pictures.  I'll find out when they come back.  Her bangs are kind of thick, so I can sort of hide it, but it really doesn't look very good.  I suppose it could be worse.

Sunday, Mommy and Daddy hung out at Daddy's boss's house for a dinner he cooked.  It was really good and it was nice to have adult conversation.  We had to leave earlier than the rest of the people because our babysitter had to be somewhere, but we still had plenty of time to spend there.

Otherwise, it's the usual busy around here.  Sarah has tutoring once a week.  She has psychotherapy once a week.  It was twice a week, but our insurance threw a fit and said that she only gets once a week now.  Sean has one more week of school.  His last day is my birthday.  He and I might head to the mall for lunch, and then he has an IEP meeting.  At least this one should be simple.  They just need to make an adjustment to put him in public pre-K in the fall, rather than have him getting services in the community.  Fine with me.  Probably the easiest IEP meeting I'll attend.

Tonight, on the advice of Sarah's case manager, I gave her a dinner of food she doesn't normally fight me on to see how she does.  She did just fine, which is good because our kitchen was unusually busy tonight.  I took video, so we'll see what they think.

Tuesday, April 17, 2012

Our follow-up appointment

So, we had our official clinic follow-up today.  Good thing, because we are definitely having problems with feedings at home.  Her breakfast this morning was atrocious.  She refused everything except the yogurt, although I was able to get her to eat the peaches eventually.  I had to re-mash them.  She still wouldn't self-feed them.  She vomited three times on pancakes, though.  It was awful.  She was not manipulating her food, no matter how much I prompted her.  It just bugged the crap out of me and I was near tears by the end of her meal.  I really just wanted to say to heck with it and end early, but I kept up with the protocol anyway.  It was upsetting for me, though, especially because I was by myself.  It sucked.

Of course Sarah was wonderful for her clinic meal today.  Self-fed everything, and only required a little bit of prompting.  That was mainly due to some major distraction.  She had to eat in the hallway because all the feeding rooms were taken.  Otherwise, though, she did great.  I had to tell D that it was an unusually good meal.  I suppose that's not awful since I do have some bad ones on video and have sent them to the clinic.  I sort of wish I'd gotten this morning on camera, but I'm also sort of glad I didn't.  I really don't think I want to relive that meal.

In general, we are still having a lot of trouble getting her to self-feed.  The other big problem is she isn't really moving the food around her mouth too often.  Sometimes she does, but she really just tries to swallow her food whole.  I had a great talk with the clinic people today and got some great tips.  I will be getting a protocol via e-mail soon to help with the self-feeding, and I should also be getting a plan to bowel train her soon.  Maybe, just maybe, I can finally get rid of diapers during the day.  She's been too old to be having poop accidents for a long time, so I'm anxious for it to stop.

As far as the moving food around her mouth goes, I spoke with her speech pathologist and we have a plan for that.  We are going to have an oral motor session sometime soon.  I think the tentative plan is to see what she can do with some easier foods at regular texture and move to those in her meals.  We suspect she's not manipulate fork-mashed foods because she's figured out she can get away with not chewing them.  She's used to being able to just swallow and not even manipulate pureed food like she's done for years, so she is sort of falling back into old habits.  She eats pretzel sticks at home without any issue.  It is under supervision, but I am pretty sure she hasn't had any trouble with them at all since we've been home.  If she has, it's been few and far between.  She can do freeze-dried banana chips as well with little to no issue.  She isn't as interested in those as she is the pretzel sticks, but she does eat them when we do oral motor practice.  She will grab pretzel sticks of her own accord, though.

Sarah has grown an inch and gained a pound since discharge.  When she had her well-child visit last week and measured an inch and a quarter over what she was past discharge and a pound over what she was since discharge, I thought there was a big scale/measurement discrepancy.  Nope, apparently not.  What a growth spurt!  She's grown an inch and a half and gained probably a bit over a pound since January.  I can't believe it!  Obviously she's eating enough.  Needless to say, nutrition had no issues with how much she's eating and drinking.  They were pleased with her variety of what she's taking in at home, so that's good.

I feel good about today's clinic follow-up, even though it was LONG.  So much waiting and I wasn't prepared for that.  Still, I feel like we have a plan for what to do moving forward.  I'm so glad that they are taking such good care of us, even after we've been discharged.  Had they not, I'd be totally lost.

In other news, Sean's birthday party was Sunday.  It went well, and everybody had a good time.  It was small and just family, but that was just fine.  Sean's going through a bit of a shy phase, and was even telling us "no party" that day, so I think he would have been overwhelmed if we'd had a huge party with a ton of kids running around.  My two plus his three cousins were plenty.  It helped that it was a warm (okay, hot, close to 90 out) sunny day and we could have the kids play outside.  He got some nice gifts and he's having a ton of fun with his new books and toys.  Sarah did pretty well at the party, but she seemed confused that I didn't do her protocol for her lunch that day.  She ate a tiny bit of cake icing, but wouldn't eat cake otherwise.  That was okay with me.  Sean joined in when people sang to him, which was adorable.  He got over the "no party" thing when he saw the cake and realized he was getting presents.  That's a four-year-old for you!

Monday, April 9, 2012

I should be going to bed, but I'm blogging instead...

So, I'll keep this brief.  I hope.

Overall, the actual eating seems to be on the upswing.  Unfortunately, the self-feeding, which wasn't even a problem before the clinic, is on the downswing.  Really, Sarah? Ugh.  Although, if I had to make a choice, this is probably how I'd have things go.  She's much less of a booger about refusing to feed herself than she is about refusing bites altogether.

Thursday was a LONG day for us.  We stayed home for the most part, other than a quick trip to the bank and one to the grocery store and to pick up dinner.  Mommy has been seeing Pizza Hut commercials for the $10 dinner box and has been wanting to try it.  I liked it, but probably won't do it again.  Too many breadsticks/cinnamon sticks and not enough pizza.  Anyway, since it was just me and the kids, no new foods introduced.  Actually, I don't think we tried any new foods all weekend.  The only thing we did differently on Thursday was give her pancakes for breakfast that Miss D had prepared when we went for our brief meal at KKI.  Sarah wasn't wild about them, but ate them okay.  I'll try and prepare them for her myself sometime.

Friday was not bad.  Funny thing is at the moment I'm blanking on what the heck I did.  I don't think we did a ton during the day.  Sarah had a therapy appointment that night, but nothing earth-shattering there.  Oh, and the kids got their hair cut.

Saturday, I got my hair done (highlights were WAY overdue) in the morning, which was really nice.  Sarah spent the morning playing outside and looked AWFUL when she came in.  Poor baby's allergies were driving her nuts.  The allergy medicine wasn't doing her any good and I felt so bad for her.  She has her well child visit on Thursday and I'm going to bring this up then.  That night we dyed Easter eggs with the kids and they were well-behaved and had a great time.

Easter was busy, but fun.  For the first time, the kids found the eggs without us practically having to lead them right to them.  It was really cool.  We met Grandma and Grandpa John (Rob's mom and stepfather) for lunch at a restaurant that's about halfway between our houses.  We had a nice time there and the kids were really good.  Then we went to my brother's house for his Easter festivities.  They had an egg hunt there, and my kids did so well.  Later that day, Sarah asked for strawberries out of the edible arrangement they add.  Okay, more accurately, she grabbed three of them.  Wanting to avoid a choking incident, or worse, I fork-mashed them and fed them to her, and she surprised the family by eating them with little no issue.  She did have a minor gag, but I assured the family she was fine and she was.  Go Sarah!

The other cool thing is that my middle brother with my middle niece's help taught Sarah how to swing independently.  This will make outside time so much more pleasant for all adults.

Anyway, the feedings overall, like I said, are going well.  She's eating everything we give her. She's just on a kick now where she doesn't want to self-feed foods that are less preferred.  She will totally refuse to self-feed certain ones.  I'm following the protocol, but she seems content to lose her reinforcer and have Mommy feed her.  I e-mailed her therapist and I'm sure we'll figure it out.  I'll take this over some of the displays we've had recently.

Wednesday, April 4, 2012

Getting better (I hope), and Happy Birthday, Sean!

So, my baby boy is FOUR today.  How on EARTH did that happen? Didn't I JUST have him?

How cute is he? Seriously.  Okay, so I'm biased.  But, I am just dying of cute exposure looking at that smile.  He's modeling his tap shirt here.  We've had it for probably two months, but hadn't tried it on yet.  Oops.  Thankfully it fits fine.

Here are a couple of Sarah in her costumes.  She grew enough at the clinic that I was worried they'd be too small.  Thankfully they still fit fine.

Cute, isn't she?  Oh, and you can't see in the pic, but she's got black capris to go with the tap costume.  I LOVE it, but can't decide if her individual photo should be in the ballet or tap costume.  If you have an opinion either way, feel free to comment.

Anyway, so things have gotten better since Sunday night.  I hope they stay this way.

Monday morning, I went easy on breakfast since we had to take Sean to school.  I didn't have the time or the energy to have a full-fledged battle at breakfast.  She had oatmeal, yogurt (I think), and applesauce.  Something easy like that.  I know that's taking the wimpy way out, but a mom needs her sanity.

After we dropped Sean off, we headed to a nearby mall and found out they didn't have an Easter Bunny (what?).  They had a post office, so we went to mail a package to find they were having computer problems and couldn't do anything.  Total waste of our time, but Sarah was super patient.  She got a lot of praise for being so calm and patient for me.  Anyway, then we headed to a different mall and went to go see the Easter Bunny there.  She loved him and they were really patient with her to try and get a good picture.  They got a decent one.  It was cute.  It's funny, Sean is terrified of the Easter Bunny and Santa, and Sarah loves them both.  Who knew?  After that, she wanted milk so we headed to Starbuck's.  I made the mistake of getting her one of those Horizon juice-box like milks.  Starbuck's didn't have them in plain, so I got her vanilla.  She hated it. :(  She was a good sport and tried a few sips, but I can't blame her if she didn't like it.  I'll remember next time and just ask them to put plain milk in a cup for her.  We headed to the library to pick up a held book for me and let her check out a book, and then it was time to pick up Sean.  It was really nice spending time with Sarah.  She was such a good little buddy and I know she enjoyed it too.  That was one thing I really enjoyed about the clinic.  I loved the one-on-one time with Sarah.  I just don't get much of that otherwise.  Anyway, Sean was super excited to see both of us and we both got a hug.

Sarah with the Easter Bunny

We grabbed lunch at home after the clinic.  I gave her strawberries and ran them through the food processor first.  They were probably a notch down from fork-mashed, but I was worried about fighting her by myself.  I think she had ravioli or some other Chef Boyardee and pears too.  She did fine with all of it.

For dinner, it was just my sister-in-law and me at home since I had to be somewhere with Rob and he wasn't going to be home in time to do a full meal with Sarah with me.  I braved lasagna with her, but took the time to run it through the food processor to get the noodles small enough.  I think she had peas and strawberries as well.  I noticed the lasagna had dried out a lot.  I added water too.  The lasagna was probably somewhere between fork-mashed and the texture below it, but I wanted to give her a good chance to redeem herself.  I set up the video camera to try and capture the meal so if she did act ridiculous, we'd have it on video.  Also, we could get video of her not chewing.  She was very leery of the lasagna when she saw it, but she ate it.  I was very proud of her.  

Yesterday she did well with all of her meals, including one eaten at a restaurant.  It was still one that I brought myself, but it was eaten without an issue.  We did lasagna again last night, and she did fine again.

This morning we did a meal at the clinic.  Her therapist saw how she isn't chewing her food most of the time, and she gave me some suggestions to hopefully set Sarah straight and help her out.  She saw a few of the other issues we are having, and helped me with that.  She also showed me a bit more with food prep, so that was nice too.

Tonight we have dance class and we're bringing cupcakes for Sean's birthday.  Woo-hoo! We'll probably have cupcakes at home too and sing to him since his party isn't for another week and a half.

Sunday, April 1, 2012

Another update

And more of a roller coaster for us.

First, an update on the bus situation.  Thursday morning, I had Sarah outside for the bus early.  Her bus attendant apologized for Wednesday and said she had in her head that Sarah wasn't riding the bus.  That more or less tells me they didn't even show up.  ARGH!  I know her schedule can be complicated, but geez! Besides, she hasn't had any appointments keeping her from riding the bus since we came back from the feeding clinic.

Anyway, as usual, meals are up and down for us.  Every time I think she's doing better and giving up the fight, I get blindsided by a horrible meal and feel like we've gone back several steps.  So frustrating!

So, Friday, I think it was, I tried grits with her for breakfast.  Just a five-bite session that we do for "new foods."  This wasn't really even new, exactly.  She ate grits fine at the clinic, but hadn't really had them in a meal yet, I don't think.  Well, they are apparently now disgusting.  I actually don't like grits anyway, but I was very frustrated with her because she ate them so well at the clinic.  I honestly wasn't predicting a problem.  I was just glad the time cap on the new food session isn't too long because we hit it.  She ate the rest of her breakfast fine.  I don't remember what the heck it was, though, other than her usual oatmeal.

That night was better.  I fork-mashed some peas and put butter on them.  She gobbled them right up for her five-bite session.  She didn't even give them a funny look or anything.  I was so proud of her!

Saturday was her last hockey practice of the season, and it was Daddy's turn to take her.  She did okay, but she is so set on using the walker for skating.  It's easier and she can go faster, but we want her to learn to skate without it.  We are hoping that we can get back to skating on our feet (I can sort of skate on my own, but I've only been ice skating maybe five times in my life) and take her some times this summer to public sessions and see if we can help her a little.  If she can skate independently and hold a hockey stick, the coach will probably move her to another practice session, giving us an extra hour of sleep.

Anyway, for lunch that day, I did a five-bite session of mixed vegetables.  Again, they were fork-mashed with butter.  She refused the first bite, but took a tiny taste (can't remember if it was willingly).  She decided she liked them and finished the bite.  The remaining bites were taken willingly and she did great.  I put peas in her regular meal, and she did very well with them.  She had one problem where she couldn't get herself a small enough bite and needed me to help her, but she was fine once I fixed that problem.

At dinner, her five-bite session was a chicken nugget that was fork-mashed.  She'd had one once at the clinic for a five-bite there and did fine, but at home she refused to try it.  I was annoyed, but not majorly.  I might try one from McDonald's or find out what brand they used or if they did something special.  I don't know.  I put mixed vegetables in her dinner and she needed a bit of prompting and had some minor refusals, but overall did fine.

Today she seemed really interested in the pancakes her aunt was making everyone for breakfast.  I gave her a little bit of mine and fork-mashed them, but she didn't try them.  I didn't press the issue since we weren't doing the protocol.  I didn't try any new foods on her for breakfast other than that.

At lunch, her new food was lasagna.  That's tough to fork mash, so I used a fork and knife and cut it as small as I could.  She devoured her five bites.  Her lunch itself went fine too.

At dinner, her dad chopped up some strawberries and I fork-mashed them into very small pieces.  She was a little hesitant about the first bite, but otherwise ate her five bites just fine.  Her regular meal was a DISASTER, though.  I think it may have been one of her worst meals since being home.  If not, it's up there.  I gave her lasagna, since she'd gobbled it up at lunch, pudding, and carrots.  She ate the pudding fine (of course), the carrots, and a few bites of the lasagna before throwing a hissyfit of epic proportions.  There was kicking, screaming, growling, crying, hitting, swatting at the spoon, spitting, pushing food off the spoon with her tongue, screams of "no", shrieks, and probably some other awful behaviors I'm forgetting.  I apologize to the entire East Coast because I think they all probably heard it.  It took all three adults living in the house to block her. Needless to say, we hit time cap, and I was practically in tears myself by the end of the meal.  I think part of the problem is she didn't chew the lasagna really well like she did in her five-bite session at lunch.  She tried to swallow a bite whole, had trouble doing so, and decided to heck with eating the rest of the lasagna.

Unfortunately, we are overall seeing a decrease in chewing during her regular meal sessions.  I have to remind her frequently, and even then she doesn't always do it.  It frustrates me to no end.  I have noticed that she seems to be chewing her bites when I do her five-bite sessions.  I'm not sure if there is a specific reason for that or not.  I sent her therapist a long e-mail (that poor woman is so patient with me) and let her know what happened and what I've noticed.  The lack of chewing is really concerning to me, and I think it's causing some of the other behavior.  I'm sure she would have been fine with the lasagna had she just chewed it properly each time.  She wouldn't have had the discomfort/difficulty swallowing the lasagna, and things would have been much nicer.

We are going to the clinic on Wednesday to do a meal.  It's not her regular clinic follow-up.  I'm hoping that she will do what she's been doing at home.  I think in the meantime we are going to try to videotape some of her meals.  If we can get either a horrible one where she acts ridiculous on video or at least one where she's obviously not chewing her food, then we'll be burning it to DVD and giving a copy to her therapists so they can see what we're talking about.

On a brighter note, it's Autism Awareness Month!  We lit our porch light in blue and will keep it blue all month in support of our little lady and her other buddies who are also autistic (okay, and everyone who's autistic).

The other cool thing is one of my favorite bloggers, Stark Raving Mad Mommy, made an awesome video featuring pictures of autistic kids. Two out of her four kids are on the spectrum, and she said she regularly hears people say s/he doesn't "look" autistic.  So, she made a video to show what autism really looks like. She requested pictures of kids on the spectrum a week or two ago, and I sent in three pics of Sarah because I couldn't decide.  She picked a cute one.  Sarah is at 0:43, with Elmo, of course!

Wednesday, March 28, 2012

Slacker update

So, here I am, out of the clinic and getting lazy with updates. I have to say part of the reason is that we are just kind of living life and going about our business.  The other part is Sean has a birthday coming up and we've been a little preoccupied with figuring out his presents and other party planning stuff.  I talked him out of Wonder Pets because, well, they're annoying, and the decorations have been discontinued, making it a royal pain to find them, even online.  I made his other two favorite shows that aren't Go, Diego, Go sound really cool, and he chose Sid the Science Kid.  I've decided I'm adopting that cartoon character as my third child.  He's a perfect angel, smart as a whip, and invented the "I love my mom, my mom is cool" son both my kids occasionally sing while I drive them to school.  Although, I have to say, I'm going to have to do something about the freaky purple Play-Doh hair he has going.

Anyway, so, meals have been going well overall.  We even gave the protocol a spin at a restaurant.  We took Rob's grandmother out to lunch on Sunday, and I brought Sarah's meal and all of her stuff with us.  I picked food she's usually more compliant eating in hopes of avoiding a public meltdown.  Sarah did great and her great grandmother was really pleased to see how well she's eating.  Then, the little booger wanted the cucumbers out of my salad.  I was so tickled that she was asking for regular food, I obliged.  That one still shocks me.  Sarah eating diced cucumbers.  Who knew?

We tried introducing macaroni and cheese last night.  I know I had said no to it at the clinic because we don't eat it at home, but it's so frequently offered at restaurants, it would have actually been a good thing to get her to eat.  Well, Sarah didn't like it.  We did our five-bite session and she barely got the first bite down.  The second bite was refused, and the time cap was hit.  I was okay with it and would be fine with giving up on mac and cheese, but Rob wants me to try again.  I suppose another trial won't hurt, but I have a feeling we aren't going to win this.  Honestly, it's okay with me.  I didn't ask for a kid who eats every single food on the planet when we walked out of the clinic.  I just wanted her to go up in textures and she did.

Anyway, she switched gears fine for the regular meal, so I was happy with that.  I do hope we can get some more main courses in her soon.  Right now it's either beef stew or some variety of Chef Boyardee.  Not awful, mind you, but it's kind of BORING.  I am going to try the frozen lasagna I recently bought on her the next time there's another adult in the house to help me.  She loved lasagna at the clinic, but I don't know what kind they bought.  I imagine they are a bit different across brands.

Like I said, meals are going well overall.  We do have the occasional negative behavior.  It's not that often, but usually I can figure out why.  She threw sweet potatoes the other day because she wanted pizza.  After her meal, I let her try a little and she refused.  Since we weren't doing a real meal when the pizza was offered, I let it slide.  A lot of times, she still needs prompting to take her bites because she's so into her video, she isn't focused on her meal.  Usually a prompt will do it and all is well.  Occasionally she gags on food, but it's usually from taking too big a bite and/or forgetting to move the food around in her mouth and chew it.

Today is apparently Crappy Bus Day for us.  This morning, the bus didn't come.  Or, if it did, it arrived early, waited 30 seconds at best, and then left without Sarah.  I was SO mad.  The bus always picks Sarah up at our house because she's special needs.  We were outside our house waiting from about 2-3 minutes before it's scheduled pickup time until 20 minutes after before I gave up and drove her.  Mind you, it was also a school day for Sean.  Sarah's school is on the way to Sean's, but it's not as easy as dropping her at the front door.  I have to park and walk her up because the carpool line is AWFUL.  Anyway, so I did all that, and managed to only get Sean to school a few minutes late.  Still, not really how I'd planned my morning.  I complained to the teacher and found out she'd had a substitute bus driver and will have a sub tomorrow as well.  Transportation is to tell the sub NOT to leave without Sarah tomorrow.  I think we'll be out a little early tomorrow, just to be safe.  I still can't believe they did that!  Then, she was dropped off 20 minutes late today.  UGH.

At least tonight I have absolutely no reason to even attempt to cook dinner.  Okay, anyone who knows me is well aware I don't really cook much anymore anyway, but I will admit to at least occasionally feeling guilty about it.  But, tonight, Rob is out with his boss for a meeting thing (long story, don't ask), and it's a fundraiser for Sarah's school at a pizza joint.  You can sit down and eat, but I don't think I'm risking my kids' behavior. I think we'll be carrying out.  Besides, I'm not interested in bringing all of her stuff and doing her protocol at a restaurant when I'm the only adult.  It was fine for Grandma's birthday lunch because the adults outnumbered the kids.

Friday, March 23, 2012

The roller coaster continues....

Ugh.  I cannot figure out what Sarah is going to do at any freaking meal.  Drives me nuts!!!

So, Wednesday I can't remember anything special about breakfast, so it must have been fine.  I fed her dinner on protocol at the rec center while her brother had dance class and she was waiting for hers.  I was very nervous to do this as we have yet to take the protocol "on the road" and I was by myself.  None of the other parents at the rec center know the protocol, and it's not like you can just ask somebody to hold your kids' hands down as they're trying to swat the bites of food away.  So, I packed food she'll usually eat without argument and hoped we would survive the meal.  I'm pleased to say it went fine.  She had some Chef Boyardee thing (spaghetti and meatballs or ravioli, I forget which), peaches, and pears.  She was fine for all of it and I don't think I dealt with any negative behavior.  Thank heaven!  I was really not in the mood to wrestle her or have any sort of other issue at the rec.  I'm not positive I'll have the guts to do it every week, but I'm glad this one wasn't a disaster.

Thursday was another story.  For breakfast, she was more or less okay.  I changed flavors for oatmeal.  She didn't get a new one, but she got one she likes less than what she normally eats.  She dawdled a bit and needed extra prompts, but she was fine otherwise.  I forget exactly what else she had.  Apricots and maybe mangoes? I don't remember, but that sounds right.  She tested a bit with the mangoes, but completed the meal and I didn't have too much trouble overall.  Dinner, however, was AWFUL.  I gave her beef stew, apricots, and green beans.  Well, apparently, green beans are now evil.  Which I don't understand because she hasn't given me trouble about green beans at all since we started the clinic, I don't think.  Anyway, her dad wasn't home, and it took all her aunt and I could do to block her and hold the bite to her lips.  She was ridiculous.  She was spitting at me, pushing the bites out with her tongue if I tried to slip them in, laughing at me, crying, etc.  All over green beans!  She took maybe one or two bites before starting this ridiculousness.  I forgot to mention she threw the cup across the room first, and thankfully it landed face up.  I was SO mad at her.  I still don't understand what her problem was.  Anyway, I got one bite in her amid the ridiculousness, and then I held the second bite to her lips as we hit the time cap.  ARGH!!!!!!  It sure would be nice if she'd have given me the memo so I could have at least prepared myself emotionally for a standoff.  I e-mailed her therapist and told her what happened after the meal was over and am waiting to hear back.  The little booger, after the standoff was over, had the nerve to ask me for spaghetti-o's.  I told her no, and resisted the urge to tell her exactly why she wasn't getting them (totally against the rules).

Today has been better overall, but she's still not where she was.  Breakfast began with her crying.  Great.  She wanted to waltz into the kitchen and have a pudding and a yogurt before breakfast.  I said no because I'd just fixed her breakfast.  Yogurt was one of her foods anyway (part of the cup), so I ignored the complaining because there's just no talking to her when she acts like this.  Anyway, she didn't even want to choose her video so I chose for her.  Stinker.  I gave her the plate and she wanted to complain.  I had to do hand-over-hand to get her to take the first bite.  When she realized she couldn't whine her way out of the meal, she actually did fine.  She asked for pudding and yogurt after the meal, and I let her finish the cup of yogurt and then gave her a pudding.  I don't mind letting her have more food if she's able to complete her meal.  She just doesn't get extra preferred stuff if she holds out on refusal.

Dinner was okay.  She fought green beans again, but not hard.  She took a big bite of them initially and gagged on them.  She seems to not be chewing her bites as often, so when I got her to take bites, I praised any kind of chewing I saw.  I also reminded her to move her food in her mouth and encouraged her to get her food down if she gagged on anything.  She gagged on one other bite, but it was sweet potatoes.  I was pleased to see more chewing in this meal.  It's really been bothering me to see her abandoning this whole chewing idea.

On a brighter note, I had a great time with my mommy friends this morning.  We went to a nearby park because it was GORGEOUS out today.  It's by a mall with a great pizza place, so we headed to the pizza place afterward.  Believe it or not, all the kids were well-behaved.  Sean and another little guy his age were a bit silly, but that was about it.  There were a LOT of babies, and none of them cried, I don't think.  It was amazing.  It was so nice to see everyone and spend time with everyone.  Sean was tired on the way home, but didn't nap, despite my efforts.  I was disappointed.

Anyway, two more weeks of hockey left.  The last practice where it's my turn is tomorrow, so it's nearly time for me to turn in.  6 am comes awfully early!

Tuesday, March 20, 2012

A so-so day for us

Well, it's been an interesting day here.

Sarah did well at breakfast.  I gave her oatmeal, pears, and peaches.  No issues with any of it.  I got her on the bus, got her brother fed his breakfast, and was hanging out watching TV with Sean when the phone rang.  It was KKI's billing department telling me I'd have to self-pay for outpatient follow-ups.  Ugh.  I was able to get a hold of Sarah's case manager right away and the situation is resolved, thankfully.  Good thing because she needs the extra help and we don't have the cash laying around to pay out of pocket!  I also updated him on how Sarah's doing and was assured that what she's doing is normal.  He was glad to hear she's eating better for me now.

Sean and I had fun this morning.  He was playing Nickelodeon Dance on the Wii (think Just Dance, but with Nick Jr characters like Dora, Diego, Backyardigans, and the Fresh Beat Band).  He had a blast, and it was so cute.

I took Sean to speech where he did well, but was a bit distracted and complained of being tired.  He actually took a good nap for me when we got home.  Yay!

Cute story on the Sean front.  He and Sarah have been on this kick where they watch Wonder Pets.  A lot.  He had this toy phone with him in the car on the way to speech, and he said it was Linny on the phone (the guinea pig in the show).  I asked him if there was an animal in trouble, and he said yes.  I asked him what animal, and he said "Bootsie!" (our cat).  Too cute and what an imagination!

Anyway, Sarah got home from school, had a snack, and was generally fine.  She tested me a bit at dinner, but learned quickly that I wasn't giving in.  She didn't want mangoes too much, but realized she had to eat them.  She managed fine, but she was being a booger.  She pulled a similar stunt with apricots, but got over it.

I brought home free ices from Rita's since it was their annual First Day of Spring promotion.  Sarah took one bite of her ice and decided she didn't like it, which was fine.  Sean loved his and was visibly and loudly enjoying himself.  It was really cute.  All of a sudden, she walked over to Sean, grabbed his ice, and threw it across the room.  She threw it so hard it made a huge mess.  It even hit the ceiling!  I was furious, especially because on top of the obvious meanness to her brother, I'd spent over an hour scrubbing the kitchen today!!!

I'm working on a new YouTube video to share our success story and thank everyone from the people who worked with Sarah directly to our lawyer who got us the coverage to the people who supported us and followed our journey.

Monday, March 19, 2012

First Monday, post-discharge

So, I made some changes here and they seem to be helping.  Either that, or Sarah has given up the fight.  I don't know.  I ran the pears through a food processor because I couldn't get them small enough with a fork.  Breakfast was oatmeal (maple and brown sugar, a familiar flavor), pears, and yogurt.  She began to devour the yogurt before I could start her video and go over the rules.  I guess she was hungry.  Anyway, I started her video and after she was done her yogurt, she went for the pears.  I was shocked, considering she's been fighting pears so much.  She ate them beautifully without fussing, spitting, gagging, crying, or any other negative behavior.  I was very pleasantly surprised.  After she was done her meal, I let her finish the yogurt (it was a 6-oz cup of regular yogurt, and the cup I used to serve it was 4 oz).  Then I packed her lunch and put Chef Boyardee Spaghetti & Meatballs in it instead of Spaghetti-o's like I've been doing.  I asked Sarah if she liked this idea, and she said yes.  I fork-mashed the meatballs and cut the noodles small and placed them in her thermos.  I also packed strawberry applesauce, yogurt (regular, not kids'), and pudding.  I e-mailed her teacher to let her know of the change and ask her to have her staff just praise her for eating it, watch her for choking (unlikely it would happen or I wouldn't have sent it), and not to comment if she refused to eat it.  Thankfully, it wasn't a problem and all that came back home was an empty thermos.

At dinner at home, she did great.  She actually brought me a can of beefaroni and asked for it for dinner.  Very interesting.  So, obviously I went for it.  I gave her beefaroni for dinner, as well as peaches that had gone through a food processor, and sweet potatoes.  She did great with all of it, although she was apprehensive about the sweet potatoes.  She looked like she was about to refuse them after the first or second bite, but she got them down.  It took extra prompting to get her to take her bites, but she didn't have any negative behaviors.  I was so proud of her.

The crazy thing is Sarah begged for cucumbers afterward!  Daddy diced up a cucumber and gave her some and she ate a fair amount of it with ranch dressing.  It was really cool.  She also asked for pretzel sticks, although she only ate maybe half of one.  I suspect she may have been tired of chewing at that point.  It was funny, though, she kept hollering at her father whenever he grabbed one.  She'd say "That's mine!"  Who knew Sarah of all people would decide she wants pretzel sticks and that they're hers?

Here's hoping this continues and Sarah has this crazy refusal out of her system.

Oh, and on a similar note, we are going to Applebee's with Grandma, Grandpa John, and Great Grandma for Easter lunch.  I spotted Kraft macaroni and cheese on their kids' menu.  I know she's had it before at OT.  I am going to wait a little longer to see how things go here.  We're supposed to wait two weeks before trying a new food.  I'm going to give it a shot when our two weeks are up as long as Sarah is behaving herself in general otherwise.  Hopefully she'll eat it okay as she seemed to like it at OT.  Gosh, if she eats that, it means I can order her stuff at a restaurant from the menu.  Wow!  I've never been able to do that for her.  Cross your fingers that she likes the mac and cheese.  I initially told the clinic no because we don't eat mac and cheese in general, but now I kind of wish I'd agreed to it because it is so readily available on kids' menus.

Here is a video her Dad took of her at hockey this past Saturday.  She's actually skating by herself in parts of it.  Go Sarah!

Sunday, March 18, 2012

Post-Discharge, Weekend 1

Oh, boy.  It sure has been an interesting few days home.

Thursday, Sarah was great. She came home from school happy, had a nice welcome home card made by her classmates, and was fine for dinner.

Friday was a different story.  She was NOT impressed by breakfast.  It was cream of wheat (new flavor, I should know better than to do that the second day home, DUH), grits, apricots, and pears.  She looked at the breakfast like "I don't want any of it."  I knew we were in for it.  So, it was a disaster.  She ate the apricots begrudgingly, the pears required Daddy to help block, and she ate the first bite of cream of wheat and spit it out.  I realized during the pears standoff, the cream of wheat had gotten cold and thick.  I added hot water to thin it out, but the damage was done.  Sarah wasn't having any more of it.  None.  We managed to get the second bite of it in her as the time cap hit. She even vomited twice during the meal, and she only vomited once during one meal (twice during speech sessions) at KKI. Sarah was upset, we were upset, and it was generally a crappy meal.  I still had to get her dressed and on the bus, and she was teary while waiting for the bus.  It sucked.  Anyway, she even told me she was angry, and I couldn't blame her.  We're not to talk about meals that go badly or ask her why she engages in any inappropriate behavior, so I ignored the comments.  I just showed her what I was packing for lunch and moved on.  I e-mailed her therapist to discuss what happened.  She said it was a combo of the new food and her testing us.  Sarah has likely figured out that feeding school is over and she wants to see if she still has to eat the new way.  I'm trying really hard to show her that she has to eat what we give her and follow the rules, but she's been pushing back pretty hard for most meals.

Dinner went better, but was more preferred food.  I think we gave her ravioli, carrots, and green beans, but I may be remembering wrong.  I don't know.  My brain is really foggy.  We loaded her with praise for eating so well and all by herself and all of that, so hopefully this whole rule-following thing is sinking in.

Saturday morning was Daddy's turn for hockey, and he went easy for breakfast for the sake of getting her out the door on time and not waking Mommy up.  It also helps to not have her agitated before practice.  She had oatmeal, pudding, and yogurt, and was fine, of course.  Lunch was ravioli, generic beefaroni, apricots (I think), and flavored applesauce.  She didn't like the generic beefaroni too much, but that's another DUH on my part. If it's not the same brand, it might taste different.  She actually did okay as the meal went on, but I bought the brand name today so I don't have that problem again.  I'm just not counting on her willingness to try new foods right now.  Dinner was okay.  It was ravioli, peaches, and carrots.  She was fine for everything except the peaches.  Again, I'm puzzled because she loves peaches.  I had to feed them to her because she wouldn't take independent bites.  I really don't know what her problem is, but my current theory is maybe the peaches we bought are packed differently than the ones KKI uses.  I have been buying her fruit in light syrup, and I'm wondering if maybe KKI uses fruits packed in juice or heavy syrup.  I have been giving her apricots packed in heavy syrup, so maybe that's it.  I bought fruit packed in juice this time, so we're going to try that.

For breakfast today, she had peaches and pears with her oatmeal (all separate, not in the same bowl).  She needed to be blocked for the peaches and pears, and it sucked.  We didn't meet the time cap, but there was spitting, gagging, and crying.  I do think I didn't mash the peaches or pears well enough, so I'm going to run them through the blender tonight to see if I can get them smaller.

Lunch was fed by Dad when I was out food shopping.  He fed her ravioli, carrots, and corn.  He didn't realize she hasn't had corn at a higher texture yet.  Oops.  I should have told him.  She ate about 3/4 of the corn and then freaked out and needed to be blocked.  We got through the meal, but were within about five minutes of the time cap.  It wasn't fun.  I am not too worried about that meal with it being a new food, but I don't get how she could eat 3/4 of it and then refuse.  That seems weird to me.

Dinner was fed by me and she did okay.  She had beef stew, green beans, and sweet potatoes.  She refused the sweet potatoes and spit out the first bite.  I don't get it.  She loves sweet potatoes, so why is she throwing a fit now? I had to go to non-self feeder for the rest of the sweet potatoes, and I don't like that.  It's not that I have a major issue feeding her, but it is a step back and it's not a food that should be difficult for her.

I e-mailed her therapist again (actually several times this weekend, I bet she's going to be annoyed when she gets those) because I'm just stumped.  I figured she'd be a booger and test me, but this is a lot for her.  I really can't have her slipping back into old habits and I'm sure as heck not going back to Gerber.  She can do this, and she has got to get into her head that we went to feeding school to learn a new way to eat.  This wasn't a weird thing we did for eight weeks.  This is the new way.  I don't know if she's stubborn, or forgetting what to do with food, or what.

On a brighter note, we gave her some diced cucumbers and ranch dressing to practice eating while we had dinner and she ate them.  I never thought I'd see the day.  She's also voluntarily eating pretzel sticks, although we do have to watch her with those.  She's pretty good about doing oral motor exercises, and generally not arguing much with us about them.

We'll see what her therapist says about the bazillion e-mails I sent her this weekend.  I don't feel comfortable even sending any different foods to school or the protocol.  I think we need more consistency at home before we try taking this to school.

Oh, and Sarah had an awesome hockey practice.  I'll try to get the video Dad took on YouTube and post a link shortly.  She is starting to skate by herself a little and it's fun to watch.