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.

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