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.

Thursday, March 15, 2012

Reflections, One Day Post Discharge

So, it's one day after Sarah has been discharged and I have stuff on my mind I want to post.

At breakfast, she gave me a bit of a hard time.  I think she was testing me because she eats fork-mashed pears just fine.  I thought I was going to need help blocking her.  I had called Daddy to come in and help me, but she finally accepted the pears and then was more or less fine.  I really think she just wanted to see if after finishing the clinic if she'd have to still eat the food presented to her with the protocol.  I think I've made that clear now, but we'll see how the next meals go.

Otherwise, though, things have been great today.  The weather outside is wonderful, and I played outside with Sean a bit.  My plan of not leaving the house today was killed by the discovery that we were out of some key food items.  Oops.  So I did have to go to the grocery store, but that was it.  I forgot how nice and quiet it is in the store when most people are at work.  Wow.

Sarah got on the bus happily this morning, and I got an e-mail from her teacher telling me she's doing great today.  She got off the bus very excited, greeted everyone by name, and is doing just fine.  She also reported that Sarah ate her lunch (preferred foods, just not baby food, I sent in spaghetti-o's, pudding, yogurt, and applesauce) fine.  She's not asking to use her trainer seat in the bathroom anymore, so that's great too.

I'm really excited to have her get home and see how happy she'll be.  I definitely feel like I made the right decision sending her straight back to school.

So, some reflections for now.

This clinic has really changed our lives, although I have to say we're very much in a transition period right now.  I have to remember that time needs to be taken to prepare her food now, rather than popping open a jar of baby food.  I need to allot time to do her protocol to make sure she eats her food.

It is a shame we were put through such a long fight with our insurance to get there, but this was absolutely worth the fight.  I'm so glad we didn't give up the fight.  It really took the team approach they take here to get Sarah over the hurdles.  She really had a mix of sensory issues, jaw weakness, and fear preventing her from being able to chew and eat solid foods.  We aren't over all of that yet, but it's all much better.

What I'll Miss:
- The incredible staff, especially her feeding team
- Having an excuse not to clean the house, not that I did that all that often anyway, I just had a built-in excuse for not bothering while we were there
- The valets, got to love people who park your car for free and don't expect a tip (I did give them a tip yesterday for the entire eight weeks)
- Seeing my parents nearly every day
- The adorable kids who were also in the clinic
- The extra one-on-one time with Sarah I don't normally get during the day during the week

What I Won't Miss:
- Having to get up, drag my son to my parents' house, and then Sarah to the clinic every day
- The parent lounge, believe me, the term "lounge" is loosely used.  I know KKI is doing their best, but I'm sick of the place after eight weeks.  It's nice to be watching what I want to watch at home, surfing the net and doing what I want on my computer, having my DVR, etc.
- The playroom when it's super loud.
- Having my son handed off back and forth between my parents and sister-in-law

Wednesday, March 14, 2012

Day 40: Discharge Day!

What a great day! It was short today due to childcare issues and my wanting to be done with this already.  We brought Aunt Jenny with us so she could learn the protocol.

Jen did great feeding Sarah.  She fed breakfast, and Sarah did a great job for her and behaved herself.  I was happy with both of them.  We hung out in the playroom for a bit until it got pretty crowded and loud in there.  Her teacher from KKI stopped by with Sarah's schoolwork for me to give her regular teacher, so that was good.  We were scheduled for school time, but it was a mistake.  I was happy because we were scheduled for way after lunch, and that would not have worked well for my parents.

Jen and I had a great time hanging out and chatting with another mom for a while.  Then we got lunch before coming back to feed Sarah her lunch.  We hung around for a while after she ate because we were waiting for D (her main therapist).  D has already been assigned a new kid and she was working on her first feed.  There was NO way we were leaving without saying goodbye to her.  I gave her a big hug and thanked her for all she's done.

Sarah has made amazing progress at the clinic.  I can't believe the change in eight weeks.  I was so happy to feed her table food for dinner.  It was fork-mashed, but it wasn't made by a baby food company.  Yay!  I was a little worried feeding her tonight because we don't own the DVDs that we have been using at the clinic, but she was happy with the two Elmo DVDs I grabbed for her.

Sean was thrilled to see Mommy, Sarah, and Aunt Jenny pick him up today.  The kids got Elmo balloons from Grammy and Granddad and a cool book (We're Going on a Bear Hunt) for doing a great job.  I was happy to take them home in the early afternoon and let them play outside in the gorgeous weather.  I think it was around 80 degrees here this afternoon.  They had a blast outside and I got some time to myself.

The kids had dance class tonight, and Sean's behavior was much improved over how it's been the past few weeks.  I think maybe the new school and being away from Mommy so much was just too much for him.  Hopefully with me home and things being back to normal, he'll continue to behave himself.  Sarah did well too, but was tired.  She was telling me she was tired on the way there, and her teacher could tell she was tired.

Tomorrow is back to life the way it was before the clinic.  I have really grandiose plans, ha ha.  I'm probably tossing on yesterday's clothes just to feed Sarah breakfast and put her on the bus.  Once she's on the bus, I'm parking Sean in front of the TV to watch PBS while I take a shower that won't be rushed.  He'll happily watch PBS until 10 when Sesame Street goes on (he gets so mad because it's Sarah's turn even if she's not home), and then hopefully he's going outside because it's supposed to be gorgeous out again.  I hope Sarah is okay at school tomorrow, and I really think she will be.  I am sending a copy of her protocol to the school, and we will be tweaking it a bit because watching a DVD while eating isn't exactly practical in a cafeteria full of kids.  I also wrote her teacher a long note about her return to school.  I really think she'll do fine, but we'll see what happens.  Since none of my plans tomorrow involve leaving the house, I'll be home if there's a problem and they can call me.

I have one pic to share from today.  It's her final braid from one of the playroom staff.  Her dishes are in front of her because she'd just finished lunch.

Tuesday, March 13, 2012

Days 38-39 & Rest of Weekend Update

So, Sunday was pretty quiet for us.  Well, quiet for Sarah and Sean and me, not so much for Daddy and Aunt Jenny.  They were taking Great Grandma to visit Grandma and Grandpa John at a restaurant at about the halfway point between our houses.  The kids and I were invited, but it's extremely difficult to have all of those people at a restaurant.  It also would have made feeding Sarah lunch on protocol impossible.  Restaurants are too distracting for her, and it's about a one-hour drive each way to the restaurant.

Anyway, for anyone who would like to laugh at us, we totally forgot to set our clocks forward.  Daddy was calling Grandma to tell her they would be late and was confused to find out they were on their way to the restaurant.  He was confused as to why they were leaving early until she reminded him it was daylight savings.  DUH!  The sad thing is he called Grandma from a cell phone, and that auto-updates the time.  You'd think he would have noticed the time change.  Or that I'd have noticed from playing with my cell phone during the day.  Nope.  Stupid, stupid, stupid.

So, Sarah was a sleepyhead Sunday too.  She was starting to "nap" again around lunch time, or maybe shortly after, I don't remember.  I needed to go to the store, so I convinced her to get up and go to the store with me.  Sean is on this kick lately where he asks if he can have a sticker if he does a good job.  I used this to my advantage and had a chat with him about what a good job actually meant.  I'm pleased to report both kids were really good at the store.  Sarah whined a bit that she was tired and wanted to nap, and was a little frustrated with me that I couldn't find something she wanted, but she was pretty good for the most part.  Sean got his sticker when we got home.  It was really nice going to Target and getting food for Sarah that wasn't made by Gerber or Beech-Nut or any other baby food company.  Awesome!!!  It's still different from what we typically eat, but I'm okay with that.  It's easy enough to prepare, so it should be fine.  I stocked up on stuff she ate at the clinic, and I'm all set to prepare her dinner Wednesday night.  Woo-hoo!!!!!

Monday was a nice, but busy day at the clinic.  Daddy joined us so he could learn the protocol.  He watched in the feeding room while I fed her breakfast.  She did great for me, so that was nice.  We had a bit of a schedule snafu, but it was okay.  They told us she had speech at 10:30 and school at 12.  Her teacher came to get her at 10:30, and I told her Sarah was scheduled for speech then on my paperwork.  She said she had her principal there for observation and she was taking her.  I talked to the speech pathologist, and she said she didn't have Sarah at 10:30.  She had her at 12.  Our schedule was printed in reverse, which has never happened to us before.  That's okay, though.  No biggie.  It just freaked me out for a bit.  Sarah was fine at school, which was a relief.  Daddy and D (main feeder) went over Sarah's protocol, and then we headed to speech.  We all took turns and went over the oral motor plan.  Sarah did very well for both of us for the exercises, so that's really nice.  We went to lunch and Daddy fed while I watched from the observation room.  That went very well.  He made a few minor mistakes, but overall he did great.  I know I wasn't perfect when I did her protocol the first few times either.

Sarah had OT that afternoon and she was so funny.  She really loves ranch dressing.  When given the opportunity, she wanted to eat it straight!  Goofball!  Anyway, she was eating all kinds of things in ranch dressing, and we got to see her do some really great stuff.  She was eating cooked vegetables that were diced to about the size of a raisin.  We were really impressed.  She also practiced handwriting and did a nice job.

We also had our discharge meeting, which was great.  They were all really pleased with how well she has done, and we got questions answered.  Everything is pretty well set there.

Today was less busy, but that's okay.  Sarah had her final OT session, and I only caught half of it due to being in an IEP meeting via conference call with the school.  The IEP meeting went well too, so that's nice.

I talked to Sarah's bus aide and we're all set for her to return to school on Thursday.

Nothing major with breakfast or lunch today, but dinner was interesting.  She threw a fit over hot dog (it was her new food).  I really had to block her, and needed backup.  As soon as D came in to help, Sarah gave in.  Once she stopped, D left the room and Sarah started fighting me again.  D came in for the rest of our five bites, and Sarah gave in again.  D was worried about me, but I really was fine with it.  Sarah can hate hot dogs.  I don't care.  D said I did great with the protocol and she would have needed backup in that situation as well.  Sarah was putting her head down on the table, and I can't block that with one hand and make her take the bite with the other one.  I thought so, but it made me feel better.  I was a little worried that I wasn't doing a good job blocking her.  Anyway, she was fine for the regular session, and I think I did a great job switching gears to get her to eat her meal.  I acted like the hot dog thing didn't happen at all and started fresh.  She accepted all of her bites, but needed a little prompting to take some of them.  No biggie.

Tomorrow is discharge day!  Woo-hoo!!!!  I am so glad to be done.  I'll miss a lot of the staff and the friends we have made here, though.  It is going to be weird not coming here every day.  I am eager to get back to our normal life.  We are sending preferred foods (not baby food, just easier stuff we know she'll eat) with her to school through the end of this week for lunch so there aren't issues in the cafeteria.  I want to ease her into things a little since I know school will be a bit of a shock.  I think she'll manage okay, though.

Anyway, we are having a short day at the clinic tomorrow (leaving after lunch), so hopefully I can give the last update tomorrow afternoon.  I will probably reflect on our experience there as well, but likely in a separate post.

Saturday, March 10, 2012

Day 37 & Weekend Update

That was the end of our last week at KKI.  I am so freaking happy.  I'm pleased with her progress, and I'm relieved that this wasn't another failed clinic.  I knew going in that she was unlikely to walk out of the clinic eating food at normal textures, but she's not too far off of that at this point anyway.  It's much better than our last clinic experience where she more or less walked out still on baby food and occasionally licking graham cracker crumbs off her lips.

Yesterday wasn't bad, just long like usual.  She had school and OT.  School was more or less fine, from what I understand.  She's getting good at making sentences with her teacher, and her teacher was pleased.  I don't know how OT went because I spent that time in the kitchen with her secondary feeding therapist going over food prep.  I needed to make sure I learned how to prepare her food at home like they do at KKI so she eats it for me.

Anyway, breakfast went fine.  She had oatmeal, blueberry yogurt, and I forget what else for her second session.  Her first session (I feed the "chew" session, which is now more of a food into session) was a different flavor of oatmeal.  Apparently, she's been eating maple and brown sugar oatmeal.  The food intro session was apple cinnamon.  She seemed to like it fine.  She ate breakfast for me without any problems.

She gave us trouble going into lunch, but was fine for the meal.  She wanted D (her main therapist), but D wasn't there for whatever reason.  She wasn't happy about this and decided she wasn't going to walk into the meal.  B (her secondary therapist) had to carry her into the room.  Booger.  I forget what the heck she ate for lunch, but remember she didn't have any issues with it.  My poor mommy brain.

Food prep was very interesting.  We prepared her weekend food and went over how to fork mash the different types of food, so that was good.  We sent the more preferred foods home because this is her first weekend home on fork mashed food and it's still a new texture for her.  It seems easy enough, though, but it will take getting used to.  I'll manage.

I came in to hang out in the playroom with Sarah for a little while before her dinner and D was in there on playroom duty.  She was having another therapist take a picture of the two of them together, so I snapped one as well.  I can't post it on the blog for privacy reasons, but it is a really cute one.  I made sure to save it on the computer so we don't lose it.  It's also uploaded to a photo storage website, and I may add it to another one to make extra sure.

Anyway, after that, Sarah grabbed my phone and took a bunch of pictures all around the playroom.  She was so funny with it she had the whole playroom staff in tears laughing.  I'm posting a few on the blog so you can see the playroom from Sarah's perspective.  I had to exclude any of the ones with the other kids for privacy reasons, so these are just ones of the playroom itself.



This one is a view of the map in the playroom.  They have a star for each place from where each patient whose been in the clinic is.  It's really interesting and I like looking at the map myself to see how far some of the kids have traveled.

Today has been a busy day like most Saturdays.  Sarah had hockey first thing in the morning, and I had to wake her up for it.  I did this AFTER making her breakfast, and that meant the oatmeal thickened up quite a bit and she really struggled.  I realized what was going on and added some milk to loosen it up and she did much better.  I have to remember that in the future.  I do have to say it was super awesome making instant oatmeal for Sarah.  A normal breakfast.  How nice.  I'm so sick of baby food it isn't even funny.  She did okay at hockey.  The coach wouldn't let her have a walker and she wasn't thrilled about that idea.  She didn't have a tantrum, but decided to lay on the ice and give her helper a hard time a few times.  She had a younger helper (I'm guessing high school or college age), so he seemed a bit unsure of what to do with her.  They got through it, though, with some help.  He seemed frustrated with her, and I don't blame him.  I have a feeling he isn't going to want to help her again any time soon.

She ate lunch fine at home and seemed to really like the beefaroni and green beans.  Anyway, she put herself down for a nap after lunch, so I canceled her therapy session this afternoon.  I hate to do that, but I hate waking up a sleeping kid even more. I took some time that afternoon to do some kid-free shopping for a few things.  I'm alone with the kids tomorrow while Daddy and Aunt Jenny take Great Grandma to go visit Grandma (follow that?), so I got some supplies to make a few crafts with the kids.  It should help keep them busy and out of trouble.

Here's a pic from hockey this morning:

Thursday, March 8, 2012

A few things from this week I forgot to mention...

Oh, mommy brain is a tough thing, as is blogging when two kids are acting up.

First off, her main feeding therapist told me she and B were cheering me on during the Fruit Cocktail Standoff.  They were really impressed that I followed the protocol and made her eat it.  They were debating on whether or not to go in and help me block her, but it turned out to not be necessary because I got her under control and made her eat it.  Yay for me!

The other thing I wanted to mention is that baby food is now a thing of the past.  It's under lock and key in this house.  Literally.  We recently bought new furniture for Sarah's room, and one is a cabinet with a key lock.  That's where I hid her baby food.  She doesn't need it anymore and I wanted it gone before we left the clinic.  She's asked for it a few times at home, but I have just told her it's gone.  She asked me to go to the store last night for it, and I told her she was a big girl and didn't need it and offered her applesauce.  She accepted, but only ate maybe half of what was in the cup.  I didn't make her finish, but I would have if we'd been on protocol.  Since this was just a relaxing snack, it was no big deal.

Anyway, that is all for now.  Time for me to hit the sack because tomorrow is another long day at the clinic.  I'm just so glad we only have a few more of these.  Next Thursday, she is going right back to school on the bus and I can't wait!

Days 34-36

Busy last few nights.  Such is life.

Sarah is doing well at the clinic.  Everyone is fine.  We are just busy.  Tuesday evening, we dropped my car off for service, and Wednesday night we picked it up.  I didn't have the energy to blog after those adventures.  I have to say we had both kids with us for the car drop-off on Tuesday and they did great.  We only had Sean on Wednesday and he was just fine.  My car needed way too much service, but that's the way it goes when you've had it for 3 1/2 years.

Anyway, Tuesday...Sarah did fine at her therapy sessions and her meals.  Her teacher told me that her principal (the teacher's) is coming in to observe on Monday and she chose Sarah as her student.  She asked me to please medicate her.  Ha ha! But I am honored that she chose Sarah.  Very cool.  Anyway, her breakfast wasn't anything out of the ordinary.  At lunch, they bumped her up a texture for her fruits and veggies.  She was caught a tad off-guard, but dealt just fine.  She made a few interesting faces, but she ate everything okay without any spitting or gagging or anything.  I got to observe OT and she had some baked potato and a fish stick, both were fork-mashed.  She had a little trouble with the baked potato, but that was because it was microwaved and she got a tough piece.  I understand that.

Wednesday was a busy therapy/school day.  She had OT, speech, and school.  She did fine for all of them.  I got to take turns with her speech pathologist and Sarah was fine for me with the oral motor exercises.  She seems to really like pretzel sticks and peaches from a fruit cup.  She wasn't as thrilled with marshmallows, but those are hard to chew and that's tough for her anyway.  She got through everything and didn't have a ton of trouble with any of it.  At OT, she had chili with ground beef, and she had some difficulty chewing the ground beef.  The OT put the beef in a therapy tool to help her out and she got it much better that way.  I was really proud of her.  School went fine, so that was good.

Today she was a bit more difficult.  At breakfast, she had cream of wheat, peach yogurt, and fork-mashed fruit cocktail.  Well, she devoured the yogurt (no surprise), and then decided she didn't want fruit cocktail.  Too bad she didn't realize that Mommy was going to make her eat it just like Miss D and Miss B do! She fought me, and I felt a bit flustered, but I'm apparently pretty good at hiding it.  I kept my cool, blocked her from swatting the spoon away, picked up bites she spit out as much as possible, and made her take her bites.  She gave in after a few.  She was not impressed with the cream of wheat either and took some extra prompting and reminders, but she didn't really fight me on that.  She seems to prefer oatmeal.  That's fine with me.  I don't care which one she eats because neither one is baby food!

At school, she was pulling a few stunts.  For one, she pulled the "bathroom" stunt.  I'd just taken her and she begged to go.  Refused to go back to the room.  I kept the trip brief and took her right back to the classroom.  Apparently she ripped up an activity she didn't want to do and the teacher made her help tape it back together.  Ugh.  I think part of the problem is she knew her feeding friends were going outside when she had school and she was upset about being excluded.  I understand that.  I promised her I'd take her outside myself after her lunch.  It was gorgeous today - about the mid-70's and sunny - so I'd planned on it anyway.

She had speech immediately following school.  She did just fine at speech, even though she had a different therapist than usual.  She didn't seem to like oranges too much there, but that didn't surprise me since she was a bit freaked out by them at breakfast today for her chew session.

We have things pretty well straightened out and set for her discharge, follow-ups, etc.  I still have a bunch of paperwork to fill out, but that will have to wait because Daddy is at guys' night tonight and I want his input on things.  Next week is it for us.  Wednesday is discharge day!  Monday, Daddy joins us for training, and Aunt Jenny joins us on Wednesday.  I'm so glad we are almost done.  I knew going in that we weren't going to have Sarah up to regular textures upon discharge, but I'm so glad she is where she is right now.  It's amazing to see, really.  Both her OT and her main feeding therapist told me they can't believe she is doing what she's doing.  They thought maybe she'd get just a bit beyond the purees, but now she's just below normal textured food.  Go Sarah!

For fun, I put Sarah in pigtails with braids today. I got a ton of compliments on her hair.  I snapped a couple pics, but they're not great because she was being a booger.

Monday, March 5, 2012

Day 33

Last full week of the clinic for us.  Thank heaven!  This has been more stressful than I could have imagined.

Anyway, she had a good day today.  Both feeding therapists were there, so that made her happy.  She had speech before breakfast, which annoyed her, but she did okay with it.  I sat in and got an oral motor plan on how to do the exercises at home.  I have already ordered the tools we don't have.  I will probably have to start taking turns with the speech therapist on Wednesday at her next session.  I'm a bit nervous about it, but I have to learn how to do it soon.

At lunch, they adjusted her protocol to give her more independence.  She loved that! She was so happy to be able to choose what she wanted to eat and in what order.  She finished all of her food and only needed a little help from me with scraping the last bits of food out of the cups.  Not bad at all.

Dinner was more of the same, so she was happy about that.  It was cute.  She has taken to hopping like a frog all the way to her feeding room for each meal, and her therapists and I can't help but laugh.  She is too funny sometimes.

She had school today as well, and when I told her teacher she was back on her meds, she replied "Thank god."  Things must have been interesting on Friday.  She worked well today and her teacher was pleased.

There is a lot to be done in the next week and a half we have left of the clinic.  They want to try to kick up her textures another notch and see how she handles it.  They also need to refine her protocol.  I also have some things I need to discuss with her team regarding follow-ups, after care, etc.

Sunday, March 4, 2012

Days 31-32 & Weekend Update

The clinic is almost over and we are no less busy!

Thursday, Sarah did very well at the clinic.  She moved up a texture at lunch.  She's up to fork-mashed food for her chew sessions and her food is about the texture of ground beef for my sessions.

She had speech that morning and it was overall pretty good, but had a pretty rough moment where she gagged on a raisin.  I thought raisins were a pretty tough food for them to be trying on her anyway, so I wasn't concerned.  Sarah was able to continue her session just fine, though, so that was good.  I felt bad for her, but, really, she did great other than that.  She was taking her bites and not really complaining or spitting.  She might have spit one food.

At lunch, her fork-mashed food was spaghetti and meatballs.  She did great and even said "Sarah loves spaghetti and meatballs."  It had her therapists and me cracking up.  She also tried kiwi for the first time with me, and she loved it.  She even said "that's good" after one of her bites of it.  I was nervous giving it to her because it even had the seeds, but she did just fine.  One of her meals - dinner, I think - had carrots that had some decently large pieces.  She handled them just fine, although I was really nervous giving them to her.

When I took my lunch break, I took Sarah over to Hopkins with me since the local radio station (Mix 106.5 for the Baltimore folks) were hosting their annual radiothon to support the kids at the children's center.  They were set up outside the cafeteria, and I brought her over to say hi.  I'd already donated a little money when I was over there that morning for breakfast.  She was unusually shy, but managed to say hello and tell them her name and age.  We were walking away when they did one of their promos.  They had a DJ there named Sarah (she's actually at another station now, but was at 106.5 for a long time and joined them for the radiothon).  Well, my Sarah heard this and insisted on meeting Miss Sarah.  Thankfully, the DJ found her adorable and was happy to hear that we spelled her name the same way.  Then, Sarah started dancing to the radio music, which totally charmed the DJs.  I told them I'd be able to listen to the station more often if they played Elmo music.  They all found this very amusing, and then asked what Elmo is singing lately.  I think they were surprised when I told them he has a version of Hot, Hot, Hot that is a current favorite of Sarah's.

I also should mention I sat Sarah with me while I grabbed lunch and she wanted some of my pizza.  That isn't unusual, but what was unusual was that she took two tiny bites of it.  She got a little cheese and a little crust, and was able to chew and swallow them.  Her chewing pattern is still very, very immature right now, but it's there! She chews! She gets a textured food in her mouth and can handle it now, at least to some degree.  Before this clinic, if anything that wasn't pureed hit her mouth, it was spit out, or gagged on, or worse.

Her dinner went well, other than her deciding she did not like mashed potatoes.  It was her first time having them, and she really didn't like them.  She threw her last bite across the room, and I'm pretty sure she knew that was the last of it and I couldn't make her eat any more of them.  I handled the rest of her protocol just fine and didn't react, so the team was happy with me.  None of us are concerned that she didn't like the mashed potatoes.  Her therapist said she has over thirty foods she'll eat, so this is no big deal.

Friday was interesting because I forgot to medicate her again.  Dummy.  You'd think I'd learn that ignoring the reminder in my phone is a bad idea by now.  Nope. She was really hyper and just off the wall.

Her breakfast went fine.  We are starting to phase out her baby cereal.  Normally she can have some after her protocol, but  I am SO over buying baby food, and she doesn't need it.  This time she was given a choice of yogurt or applesauce, and she chose yogurt.  For the rest of the day, she wanted yogurt after every meal.  Surprising, but fine with me.  I will be so glad when this clinic is over.  We already don't really buy much baby food with them sending food home for the weekend.  I'll be so glad to get rid of the baby food for good.  She still asks for it occasionally at home, so I need to ask her therapists how to deal with that.  I really want to take it away.

She had school, and I didn't insist on her going to the bathroom beforehand, so of course she had to go in the middle of her session.  Her teacher asked me if she was off her medication because apparently it was pretty obvious to her.  Oops.  I really felt bad about that.  She was driving everyone crazy Friday!  After school, we met the rest of the feeding kids in the therapy garden.  It's this really cool place just outside the building next door (also a KKI building).  Sarah got to run around for a while and get some energy out.  I plan on taking her again when it's nice, even if the group isn't scheduled to go out there.

She did fine at lunch, but I don't remember what she ate then.  I do remember that she noticed the therapist taking data had her main therapist's computer.  Sarah can read D's name and she kept looking at the computer, saying D's name, and looking at the therapist.  D was out for the day and Sarah knew that.  She seemed confused, as if she was wondering if somehow the data taker was actually D and she missed it.

She had OT and I sat in on the session, but assured her therapist I would leave if Sarah seemed to have an issue with my being there.  Sarah did great and ate her food.  She really seems to like cucumbers in ranch dressing.  They also worked on spaghetti, although not quite at its full texture.  The noodles were cut into smaller pieces - maybe a half inch long.  Sarah did great with them.  They also worked on writing letters, and Sarah needs more work on 'E' but did well with the others they practiced.

She did fine for dinner, other than being a bit of a booger for starting my session.  She decided she wasn't going to sit in the chair.  As soon as we were about to put her in a more restrictive chair, she behaved herself.

We got another weekend kit, and Sarah has been eating just fine for me all weekend.  We could have had one snag, but I realized it before starting any meals.  We get two DVDs, and she can choose which one she wants to watch for her meal.  Well, it seems her therapist never took the one out of the DVD player after her dinner Friday and we took an empty case home.  Thankfully, my goofy kid always chooses one DVD at the clinic, and the other while she's home with me.  I don't know why, but it was a fortunate situation this weekend.  I couldn't give her a choice, but I knew she'd be watching what she'd likely have chosen anyway. Anyway, I showed her dad some of the bites I was presenting so he could see the new texture, and he was so impressed with how well she's doing.

Our Saturday was so busy! She had hockey practice that morning (Daddy's turn).  I had to run to the gas station as the family car was running on fumes.  We knew this beforehand and were able to explain to Sarah that she'd be going to hockey with Daddy in the truck.  I'm so glad we have extra carseats/booster seats in the truck for the kids.  So much easier.  Anyway, I took Sean to the gas station while Daddy and Sarah were at practice, and Sean said "Mommy and Sean."  I guess he misses our time together too.  I wish I'd realized that earlier or I may have taken the time they were at hockey to take him to breakfast.  I do plan on having some special time with him when Sarah is discharged.  He really has been a good sport about this, though.  He spends a lot of time with Grammy and Granddad, as well as with Aunt Jenny, and he doesn't complain.  He also generally behaves himself for everyone.  I really worried about how he'd take things and expected him to act out.  He really hasn't, and, if anything, he has actually mellowed out a bit.  Not to say he is an angel, but he seems to be controlling himself better these days.

After everyone was back, I fed Sarah her breakfast on protocol, and then we headed to Monster Mini Golf for a morning of mini golf, courtesy of our chapter of the Autism Society.  It's a really cool indoor mini golf course.  It's dark, and under black lights, so all of the stuff is fluorescent.  It was fun, but Rob and I gave up pretty quickly on doing any mini golfing ourselves and just helped the kids.  We also got game cards at the end and let the kids use them. We got enough tickets at the end to get Sarah a small bracelet.  She was happy with it, so that's fine with me.  Maybe some other time, we'll go again.  It's a bit of a hike from here, though.

We got home in time for me to feed Sarah her lunch on protocol, and then head to therapy.  I was tired by then, and needed to rest a bit, so I didn't go to my dance class.  I normally don't book my Saturdays this solid, so something had to go.

That evening we had a playdate with a kid from the clinic and his older sister.  He's in the inpatient program, and they can only take him out for brief periods of time.  Since we live close by and Sarah gets along well with him, we invited them to come by.  That way, he can hang out and not have so many rigid rules.  All the kids got along great, and I got to enjoy some adult conversation with his mom and dad.  I know their oldest really liked our Just Dance Kids 2 for the Wii.

Today has been much quieter.  All I did out of the house today was take Sarah to her hockey team's fundraiser.  That was fun, and I honestly wasn't too sad about Sarah only wanting to skate for twenty minutes.  She did fine, and seemed sleepy that afternoon.  She conked out in the car on the way.  After we got home, she actually took a nap.  I think it's from her medication.  Sometimes it makes her sleepy, especially if we stop and start it too much.  I really need to do a better job with that.

I spent a lot of today relaxing.  While Sarah was napping, I finished up my library book and watched a show on Netflix. Tomorrow is an early start, seeing as Sarah has therapy before breakfast (thankfully I was asked if this was okay on Thursday), so I need to head off to bed so we can try to do everything at least fifteen minutes earlier than usual tomorrow.  Lucky me.