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.

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