Sunday, January 29, 2012

Days 7 & 8

Looks like I'm getting into a bad habit of not updating. Well, in my defense, I did try on Friday from KKI, but the stupid computer wasn't connecting to the blog site and it's way too tough to do this from my phone.

Thursday, they scaled back to preferred foods to see if that would stop the throwing. They wanted to make sure that Sarah is throwing food because she doesn't like it, and not because she's full or some other reason. Sarah spit out one bite at breakfast, and then threw the next bite, but was okay otherwise. I'm sure the reason she spit out the bite was because they had mixed two foods together and Sarah didn't like it. She rarely spits out food, so I'm pretty sure that was it. Besides, pureed peaches mixed with strawberry-banana yogurt sounds kind of gross to me anyway. She did fine at lunch and dinner.

I also had the parenting group to help deal with outside of mealtime behavioral issues. Sarah is a fairly well-behaved kid, but these are good lessons anyway. I have a lot of issues with Sean, and these lessons are a good way to think about things and handle them with both kids. Thankfully since I have put so much work into reigning him in, a lot of this is stuff I know.

I also met with a playroom therapist that day to go over a plan to break Sarah of her insistence on using the potty ring every time she uses the bathroom. So far the plan is going well. We aren't trying it at home until they are successful in the playroom. It's actually going so well in the playroom that they actually want to talk to the therapist and make sure it isn't going too fast. Maybe Sarah's just a quick study.

Sarah also had speech and OT that day. I don't know how OT went because I was tied up in a meeting when that happened, and I can't watch anyway right now. I didn't get a chance to talk to her OT to see how it went. I watched speech, though, and it was her most difficult, yet most successful session. They do seem to be getting through to her, but I know this is so, so hard for her. They are fighting a lot of jaw weakness and sensitivity and it's tough. She did very well drinking water out of an open cup, though. She can do it, but she struggles a lot and the free flow scares her a bit. She prefers a straw or sippy cup. She struggled a bit with it, but then seemed to get the idea. They managed at speech to get part of a "puff" (think finger food for babies that's roughly the size of a Cheerio) into her. They are star-shaped, and they got about one "star point" into her. She cried and fought and eventually gagged as it went down, but she got through it. Her speech therapist said the gagging will get worse before it gets better, but it will stop. We'll see what happens.

A cute story from Thursday:
We had to stop at the pharmacy on the way home from the clinic that night. She decided to have a "conversation" with the car in front of us. She kept saying "Hey, White Car, are you going to the grocery store? Yeah? We're going to the grocery store!" It was so funny. I had to go to two pharmacies to get what we need, but I got it.

Friday was an easier day for us. Sarah had OT at the clinic, but nothing else beyond the usual meals. Breakfast was more preferred food, and Sarah did fine and didn't throw anything. She did fine for lunch and dinner, even though they'd added in foods she had previously thrown. A few things got some funny faces, but otherwise she ate them just fine.

She said she had wanted to take a nap that afternoon and was looking tired, but she didn't sleep when they made her a bed and everything. Weird, but okay.

Time for me to head to bed as it is more of the same tomorrow.

Wednesday, January 25, 2012

Day 6

So, one pretty good meal, one excellent meal, and one really bad meal today. She also had speech and OT.

Breakfast was peaches, yogurt, strawberry applesauce, and pancakes. All pureed. Toward the end of the meal, she threw the strawberry applesauce and the pancakes. We think she may have been getting full and decided she was over eating the foods she liked less. There was even pureed pancake in her hair.

She had OT shortly before lunch. I can't watch those sessions because there's nowhere for me to watch undetected. Her therapist got her to chew a green bean with help of a therapy tool. Some parts of the green bean were actually chewed and swallowed. So, very good for her.

Speech was a huge struggle for her, and there was a lot of fighting and crying. She just really hates a lot of the work they are doing to desensitize her mouth and strengthen her jaw. It's hard for her and she wants to try and fight her way out of it. I can't blame her, but I'm really glad her therapist isn't letting up. She called a helper in when she was putting up a huge fight because she was concerned Sarah may hurt herself or the therapist. Once Sarah saw the extra person, she gave in and let her do the work. It was a little hard to watch her so upset, but I'm pleased to see the results and the persistence. It's good to see that she can't sucker the therapists into letting her get out of things she doesn't want to do.

I really hope speech and OT allow us to increase the texture soon. I have to trust that the experts know what they're doing. I do know some of the concern is that Sarah swallows her Spaghetti-o's and Elmo pasta whole and doesn't chew them. So, obviously that's something they need to make sure she learns before we up the texture too much.

Here's a picture today from dinner. The arrows point to where she threw the spoons. You can see how one of them is half under the door. She has an arm! Excuse the reflection on her. I took it from the one-way window where I was watching.


Tuesday, January 24, 2012

Day 5

Well, the food refusal behaviors have begun. Her therapists are excited, oddly enough, because now they know what to look for.

Breakfast was pureed fruit cocktail, pureed pancakes, yogurt, and pureed carrots maybe? I forget. Anyway, Sarah was NOT impressed with the pureed fruit cocktail (surprisingly) or the pureed pancakes (they looked nasty, and I couldn't honestly blame her). So, after a bit, she started to throw the spoons across the room. Eventually, her therapist got good at catching the spoon before it went flying. Surprisingly, Sarah was the only one wearing the food by the end of the meal.

Lunch was better. She had pureed peaches, vanilla pudding, pureed broccoli and cheese, and pureed spaghetti and meatballs. She threw the very last bite of the broccoli and cheese and the very last bite of spaghetti and meatballs. Everything else went just fine, and we were surprised she threw her food, honestly.

Dinner was very good for her. She had pureed beef stew, yogurt, applesauce, and carrots. She was fed by the backup therapist this time. Nothing got thrown at all, and she never even needed any extra help taking any bites. She looked like she was thinking about throwing the spoon a few times, but it didn't happen. Good for her!

In other news, the playroom staff is working to help us with behavior issues. Sarah is a pretty compliant kid, but the behavior lessons they are teaching may help me with Sean as well. One thing they do want to try and break her from doing is her insistence on using her potty ring every time she uses the bathroom. She's plenty big enough to go without it, and it's a pain to lug that stupid thing everywhere. They are going to work on a plan to stop this behavior, and hopefully once her stay at the clinic is over, she won't need it anymore.

More recent pics from the clinic (faces of other kids are blocked to protect privacy):

The kids on "the buggy" they use to transport the kids between the different playrooms

Sarah as a mail carrier/police officer

Uploaded from the Photobucket iPhone App
"Doctor Sarah" giving one of the playroom staff an exam

Uploaded from the Photobucket iPhone App
"Doctor Sarah" examining a baby doll

Monday, January 23, 2012

Day 4: Happy Birthday, Sarah!

Well, my princess is 7 years old today. We spent the day one building over from where she was born. Crazy, huh?

After a weekend of birthday parties (one family, one friends), Sarah seemed pretty tired for a lot of today.

This morning she ate some pureed table food. I forget at this point exactly what it was, but she ate all of it. She may have initially refused one bite. Lunch was pretty good. She initially was kind of unsure about one or two of the foods, but eventually accepted them after a few funny faces. She insisted on using the bathroom in the middle of lunch. A lot of times, she will ask to use the bathroom as a stalling technique, but she didn't seem upset about anything they were doing and was very insistent, so they ran her to the bathroom real quick and resumed the meal. I'm assuming since I didn't hear otherwise that she actually went.

She had speech and OT today. I have no idea how OT went because I didn't get a chance to talk to the OT, but speech went well. There was crying and fighting and pouting on her part, but her therapist got what she needed out of her.

Here is a picture of her today at the clinic with her extra birthday stickers!
Uploaded from the Photobucket iPhone App

Friday, January 20, 2012

Days 2 & 3

Well, our first week is over. It was a partial week, but we have two days off now.

Yesterday we did another baseline feed for breakfast. She did fine and showed them how she normally eats. Regular applesauce was a "non-preferred" food because she's been refusing it for the past six months. She actually ate several bites of it before refusing it. She skipped saying "cowabunga" this time when offered the cookies, but still crumbled them in true "Cookie Monster" fashion.

For lunch, instead of feeding her, they went through a ton of toys and figured out which ones she liked best. I gave her lunch after that.

For dinner, they tried some table purees and gave her some yogurt as well to see what she did. We expected her to refuse all but the yogurt, but she actually ate all of them except one variety. She tried each of them, but decided she didn't like the one kind. She did take that variety most of the time when they "pushed" her, but she really didn't like it.

She also had a speech session, focused on oral motor and sensitivity. That was rough for her, but she worked really hard. They were firm with her, but not so pushy that she was horribly upset. The only crying I saw was more of a pouty "I don't like this and you're bugging me" cry. They got her to do what they wanted her to do, so I was really proud of her. I liked what I saw out of her and the speech pathologist. She needs someone who is going to push her because she will try and get away with less if you let her.

The clinic had me meet with a social worker to see if I'm doing okay and have the right support in place. Apparently, I do. Nice.

Today was a much easier day. I wasn't bogged down with one meeting after another. Sarah ate more table purees today. I was surprised she liked one of them that was more or less completely new, especially because she refused the first bite of it. She had OT today, which I didn't watch because there isn't anywhere for me to do that. Her therapist said she did very well and she liked a lot of what she saw. She said Sarah is delightful.

Wednesday, January 18, 2012

Day 1

Well, the day I never thought would come arrived! We had our first day at the clinic and we survived!!!

We were greeted by the intake coordinator and she hugged me. After all the time spent fighting to get us here, I wasn't surprised to get one. I probably would have hugged her anyway! We went through triage where Sarah was found to have a bit of a raw throat and a tiny cough, but she seemed okay otherwise. I have no idea where that came from, but she seemed fine for the most part today, other than a pretty big sneeze at one point. I hope it's not the beginning of a cold.

Anyway, the only other problem we had in triage was when the nurse practitioner went to look in Sarah's ears. She was NOT having that! We'll have to try again tomorrow, and I warned her we will need other people to hold her down. It usually takes two or three of us at the pediatrician's office.

Sarah got to hang in the playroom while I got the tour. Kennedy Krieger is a BIG place! It's really nice, though. They have a ton of different feeding rooms, great speech rooms, OT, etc. All therapies are integrated into the program, but they will also work in some IEP goals too so she doesn't lose the progress she's been making at school and through private speech therapy.

After my tour and meeting with her feeding therapist, I hung out in the playroom with her for a bit and then we went off to meet her speech therapist. I'd forgotten that we met her years ago when we went for an oral motor consult. Considering that was August(?) 2009, I suppose I'm forgiven! Anyway, she seemed nice and we went over what I'd like to see Sarah get out of the clinic, what she's been doing in private therapy, etc.

When we got back from that, it was time for Sarah's lunch. This was just a baseline feed. She ate like she normally does, and was offered two foods she doesn't normally eat. She gave them normal refusals, although I have to admit her cookie refusal was pretty funny. She decided to say "cowabunga!" and try to break it up like Cookie Monster. I think she gave them a pretty good feel for what she does.

After that, the playroom was unsupervised, so Sarah and I hung out for a while there until the playroom staff came back. I ran to go grab some lunch for myself while she watched an Elmo DVD. Later, I met with the nutritionist and went over goals (again) and food allergies. I also met with her OT shortly after that. I think I must have told people our goals 100 times today!

Sarah didn't eat as much as she usually does for lunch, so she was READY when it was time for dinner. She nearly ripped my arm off as she went to the therapy room. She got the same meal as she had for lunch and practically inhaled it. She did the same "cowabunga" routine with the cookie. Goofball. I think that may have been a record time for a meal for her.

We left to go home after that, and I got a bit of rest time before it was time to take her to her dance class. She had a great class and seemed to enjoy the fact that it was the night where parents get to watch class. Even her little brother wasn't too disruptive.

I took a few pictures of her at the clinic today and at her dance class, but it's late and I am too tired to post any.

Tuesday, January 17, 2012

Tomorrow is the day!

Well, I still have things to get together, but nothing major. Sean is pretty well set for staying with my parents. I might need to pack some spare clothes for him, but not much else.

I need to try and prepare a picture schedule for Sarah because I think the clinic is going to confuse her enough. To add to things, tomorrow night is a special night at dance. It's the night where parents watch the class. The plan is for Daddy to pick up Sean from Grammy and Granddad's and take him to dance. I'll bring Sarah to her class after that. She's used to eating dinner in the waiting room while Sean dances, so that should be nice and confusing for her. Hopefully the picture schedule will help her understand and not freak out and refuse to dance.

To top things off, I'm battling a nasty sinus infection. Yay. I get to be miserable and exhausted tomorrow. Here's hoping the antibiotics have kicked in by then!

Sunday, January 15, 2012

Here's Sarah's Victory video. We won the fight against our insurance company and she's going to the clinic!

In the meantime, I'm busy getting things ready at home. I'm trying to get the house in order, make sure my parents have Sean's activity schedule, etc. It's going to be a tough 6-8 weeks, but we're ready to do this!

Treatment starts Wednesday. Sarah's off school tomorrow for the holiday. She'll be in school half a day Tuesday and then she has a psychiatrist appointment to check on her medication. She'll have a tutoring session, and then that's on hold at least until we figure out if she'll be in any kind of mood to sit and work after a full day at the feeding clinic.