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Wednesday, September 18, 2013

Tah-MAY-doe chips

Try as she may, Raya gets tongue twisted when she tries to say potato, and it almost always comes out as tomato instead. I can't help but wonder what other people are thinking when they overhear Raya ask me for "tomato chips", or rather "tah-MAY-doe chips". This past week, we have come to suspect that in spite of her negative allergy tests (multiple) for corn, she has been having a very subtle allergic reaction to corn and/or Duocal (which is pretty much just a mixture of cornstarch and oils). We've subtly been cutting her off of corn products and replacing whatever we can with potato, so the tortilla chips have been traded in for potato chips. I don't love handing her potato chips, but with a kiddo like her, you do what you gotta do.

I mentioned before that she had dark circles under her eyes and just seemed to be getting more and more run down and just generally unhappy and seemed off. I forgot to put Duocal in her formula one day last week and then decided to leave it out again the next day and see what happened. Oddly enough, she was sweet, happy, pleasant, and just downright delightful the entire day for the 2nd, 3rd & 4th days that she was off of it. On Sunday, we put her back on it. By Monday, she was a little gremlin. She fought me tooth and nail to get ready for school that morning, although not quite as bad as the meltdown a couple weeks ago. She was about as stubborn and defiant as I've ever seen her about every single tiny detail of getting ready for school. Yesterday was pretty much the same except that she didn't have school so she was home with me the whole day. {it was a very, very loooooooong day...} She refused to wear normal clothes and it wasn't worth fighting with her so she wore the damp, smelly pajama pants she had slept in underneath a 3 sizes too big Snow White costume and her knock-off Croc shoes (on the wrong feet, of course). Whatever. That alone made me glad she didn't have school because that's what she would have worn. Instead, she insisted on helping me plant the rest of the garden in the aforementioned get-up. Here she is planting some cabbage seeds.

After the cabbage (which I didn't really care about because I usually end up ripping it out because of bugs before it even vaguely resembles cabbage), she insisted on helping me with the spinach and all of the herbs, which all had microscopically tiny seeds that I even had trouble picking up. Factoring in a girl with the fine motor skills of a 3 year old who is having ridiculous mood swings and it will be interesting to see what ends up growing where.

Given the way yesterday went, I discussed it with Donny and a couple of my very smart mommy friends, and made the executive decision to stop Duocal indefinitely and replace those 75 calories with extra formula or food. She is already in a better mood today. I have wondered during the last 7 days if not getting enough sleep had something to do with the crabbiness but she didn't get a great night's sleep last night either and she's in a great mood today. (She woke up at 1:00 because her stomach and throat hurt.) Her energy level seems closer to normal too. Obviously there are multiple factors involved in all of her symptoms but I think we've seen enough evidence this week to reasonably conclude that Duocal isn't doing her any favors. It may not have anything at all to do with corn. She's had lots of things with corn & cornstarch without any noticeable effects, so it could just be that Duocal makes her feel crappy. At 42 calories per tablespoon, I can imagine it might not sit too well. She's never really been able to verbalize her physical discomfort beyond telling me her stomach hurts & she has puke in her throat, so behavior is usually our indicator that something is off. We shall see how it goes.

We also made the adjustment with her gabapentin to 3 times a day rather than twice. I think it would be helping if it wasn't for the fact that her delayed gastric emptying/gastroparesis and reflux are making her feel yucky late at night. We just started her back on a PPI (proton pump inhibitor, aka stronger reflux med) so hopefully soon that will start to kick in and help her feel better at night. {on a side note, I saw that insurance was billed over $400 for just the one new reflux med. in-freaking-sane.}

Anyway, today has gone fairly well, especially considering how well Raya handled me telling her that her respite provider had to cancel for today so she could take her puppy to the vet. She had texted me shortly after I took Raya to school and I knew Raya would be mad. She asks me about 20 times a day what day it is and if her respite provider is coming, and she knows that she comes after school. Sure enough, on the way to the car, she said something about it and I had to tell her that she wouldn't be coming today. Raya stopped walking, put her head down, and pouted right there in the middle of the parking lot. Thankfully she was already in a pretty good mood or it would have been worse. I reminded her that we had talked yesterday about painting our nails, and then she started walking again and thought that sounded like fun. The second we walked in the door, she put her shoes away and headed for the basket of nail polish.
I painted her fingernails and toenails and thought we were done but then she got a sad/surprised look on her face and said, "Aren't you going to let me paint YOUR nails now?" I will admit that I can be a bit of a control freak, especially when it comes to things like nail polish that can potentially ruin anything and everything it touches, so the idea of letting my 3 year old paint my nails was not at all appealing, but I let her do it anyway.
We can always tell when she's concentrating on something because her torticollis tilt comes back. :) The pictures make it look nicer than it actually was but she did a surprisingly good job for a kid her age. Thanks to the deep crimson red color, some of my toes looked like they had been massacred by the time she was finished but she had a great time doing it and was pretty proud of herself.

I, on the other hand, was proud of myself for leaving it just how she did it (aside from cleaning up the excess polish that was dripping down the tips of my toes) and not fixing it. :)

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