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Friday, December 28, 2012

So much silliness!

I don't want to jinx myself but Raya seems to be starting to feel better. She and I have gotten to sleep in our own beds for a couple nights in a row now. It's been lovely even though I've ended up being up really late anyway. We had an interesting day today. I'm not sure if it was because we accidentally missed a dose of one of her meds last night or if it's because she's not quite back to herself, or if it was just Raya being Raya, but she was in rare form.

She was very happy to go see her OT today. She was out last Friday so Raya has really missed her. For whatever reason, Raya wouldn't talk during OT. All she would do was make little animal-ish sounds and her funny hand gestures that she does with the sounds. When her therapist made her answer a question out loud, she would state at her with a cheesy grin and not answer for a minute or two. Then when she did answer, it was a one or two word answer that was barely even a whisper. She was acting silly the whole time we were in the therapy area.

After OT, we walked to another room for feeding therapy. I knew it was going to be an interesting day at FT after the way she'd been during OT. I had brought her buckwheat pancakes and a little container of syrup but when I opened the syrup, I discovered that it was completely hardened. Oops. There was a jar of grape jelly in the fridge but that was undoubtedly cross-contaminated with wheat so we didn't want to use it. The other alternative was applesauce since they had single-serving cups of it in the kitchen. Raya was okay with that so we went ahead with it. I cut up her pancake and put applesauce on it and the silliness began.

Her hands were talking to each other today. She's done that during feeding therapy before but this time it was a lot worse. She was SOOOO distracted and totally off in her own little world. She was chattering back and forth with her hands, who were taking turns holding the fork and helping each other lift it up to Raya's mouth. They weren't very good at getting the pancake pieces into her mouth and she wasn't doing a very good job of taking the bites off the fork with her mouth either. I normally try to be involved in therapy sessions but this time, I mostly just sat back and let the therapist deal with her. I wondered many times if the therapist realized what Raya was doing because she would respond to things Raya had said (or what she thought Raya had said) when really, Raya was not talking to her, she was making one hand talk to the other hand or else talking to her hands. It was comical but only because I didn't have the energy to be frustrated by her lack of cooperation or snail pace at eating her pancake. Sometimes I appreciate when she "misbehaves" in front of her therapists because then they know that it's not just me that she does these behaviors for. She wouldn't listen to her therapist either! I discreetly took a few pictures with my phone because she was being so silly but I didn't want her to know that I thought she was being silly.
Right hand standing on the table while left hand waves the fork around
Dancing hands...
One hand {barely} holding the fork while the other one supports it
One hand helping the other hand hold the fork to poke a piece of pancake
One hand "standing" on the table so the other hand could stand on it to get a boost and reach her mouth with the fork
Playing iPad games in between bites
So you can see that feeding Raya really is a "group" effort, haha. :) During other sessions it has taken less than half an hour for her to eat whatever it is that we have for her. This time she was eating clear up until the 50 minute mark and we ended up taking some of her leftovers home. She usually doesn't get to play her therapist's iPad until she's completely finished eating but today, she had to play every couple of bites or she completely lost interest and motivation, and it wasn't because she didn't like the pancakes & applesauce. She was just off in la la land, which was a common theme throughout the day.

Once we were at home, there was a constant level of chatter coming from her but most of it was unintelligible and made no sense. When we'd talk to her, she'd give us a happy but blank stare and make animal noises with hand gestures instead of talking to us. She was pretty moody too, which I think had to do with her stomach. In the afternoon, I had just gotten the mail in and was sitting at the table going through it. The kids were all sitting at the table looking at the slough of Christmas cards that came and Raya was jabbering nonsense to herself. Then in the middle of whatever she was saying, she said as clearly as could be, "Mommy, I just puked in my mouth. But my throat made it go back." So yeah, she's having some reflux. We're bordering on having to slow her feeds down again, which puts us teetering on the edge of needing to go back to a night feed. That would be another step in the wrong direction but if it makes her feel better, then we'll just have to do it. Right now, she really does feel better and have more energy when she's not being fed.

On the bright side, she's been tasting some new foods lately. I finally got her to eat the Glutino table crackers that I bought. It took several attempts but she likes them now. My plan is to use them to get her to taste other things. We started with putting sunflower seed butter on a cracker, which she didn't like, but she did like strawberry jam on it. I'm okay with her not liking sunflower seed butter because I would hate for her to get confused and think peanut butter is okay too. Since she likes them with jam, we had her dip them in applesauce. Then we were having BBQ sauce with dinner one night this week and she wanted to dip the cracker in that. She ended up eating 2 1/2 crackers and about 2 teaspoons of BBQ sauce, which added up to about 200 calories. Definitely not very nutritive calories but the important thing is that she's branching out and expanding her palate.
A couple days ago, I had given her a couple of crackers with jam on them and after she finished eating, she came up to me and said, "Mommy, my skirt is wet." I looked down and sure enough, her extension tube had come unclamped and everything she was eating was coming straight back out through the open extension tube. It was gross and I was bummed about the calories but happy that she at least ate the crackers.

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