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Thursday, July 4, 2013

Another new food

Raya added another new food to her diet last night. I hadn't really planned on it but we had some fresh peaches and I thought she might like them so I let her try some. I think it was the first time in her life that she's ever had peaches because I don't think we ever tried giving her baby food peaches during our brief and pathetic attempts at baby food.
She was not overly impressed. She ate a couple of pieces but it didn't really do anything for her. All she wanted to eat was the corn. She ended up eating about 2 tablespoons of corn so that was good. The jury's still out on whether or not peaches agree with her body. To put it mildly, there is some funk coming from her today and I'm not sure what else it could possibly be coming from, but it could definitely be the peaches.



Showing off their cute shirts from Grandma & the Idaho cousins!

Her oral intake has really gone down lately. She'll do well one day and then not want anything the next day. This morning we went to the Independence Day breakfast at church. Usually by 8:00 in the morning, she's either begging for something or she's already eating/drinking something but this morning she wasn't. I took a bag of Corn Chex and a box of Splash for her to have while we ate our {terribly unhealthy but delicious} breakfast but she really wasn't interested at all. She ate about 3 pieces of cereal and drank an ounce or two out of the 8 ounce box of Splash, and it took her about 20 sips to drink that much. 
The heat may have been part of the problem this morning. She doesn't really do well with heat. Clearly we live in the wrong state. :) On days like this, I just want to leave her tube in forever so we can help her out when she feels crappy from the heat. I've also decided that prepping a child with a G tube for surgery is MUCH easier than prepping a child without a tube for surgery. Raya will be having her endoscopy with botox injections next Friday (not surgery but still requires anesthesia) and her big brother is having an adenoidectomy tomorrow. I'm already dreading having to either wake him up at 11:00 tonight so he can eat something before his midnight cutoff or live with him when he's gone without food for almost 12 hours before his surgery (which is stupid, he doesn't need to go that long but whatever). With Raya I can just run formula into her until whatever time she can't have formula anymore and then run clear liquids until it's time to turn that off too. Piece-o-cake. Feeding tubes are awesome.


And on a side note, I hung up the phone yesterday after talking to the GI scheduler and thought to myself, "Did I really just schedule my 3 year old for BOTOX injections?? Really??" It was another one of those "is this really my life" moments. It wasn't about the botox though. More like just a moment of, this is not AT ALL what I pictured when I was holding her the day she was born. Kind of a "how did we get here" moment. I sat in feeding therapy yesterday and watched her ever-so-slowly eat a grand total of about 2 cubic inches of potato and drink less than half a box of Splash. It took her a good solid 40 minutes and she was FULL. She is so sweet. Her feeding therapist and I both could see that she was full, but her therapist told her to have another sip of Splash. Raya looked at her and she might as well have said, "Miss Heidi, I will smile politely and take another sip because you asked me to but I really REALLY don't feel like I can fit another drop in my stomach and I can't promise that I won't puke." so we stopped there. (and she still had potato in her stomach 3+ hours later)

As I watched her slowly pick her way through her tiny amount of food, I couldn't help but think about how I don't even remember anymore what it's like to watch a 3 year old eat a whole meal, or even what a full meal for a 3 year old consists of. I know it's a whole heck of a lot more food than she can fit in her stomach right now. I tried to picture her eating a whole PB & J (which will never happen thanks to her food allergies) and just couldn't even imagine her eating something that big, let alone eating it in the 25-30 minutes she'll get for lunch when she's in school. Can't even imagine. This is why we're trying the botox. If injecting botox into her pyloric sphincter will relax it enough to allow food to leave her stomach at a more normal rate and make it possible for her to eat more food at a time, then maybe that pipe dream of watching her eat a whole meal won't seem so farfetched. If it works, we'll keep doing it until it doesn't work anymore. If it doesn't work................. yeah I haven't gotten that far yet but if it doesn't work, then we'll move on to the next thing. If someone had told me 3.5 years ago that I would someday be scheduling my preschooler for botox injections, I would have laughed at the ridiculousness of it, but now I just hope it helps her. Who would have ever thought that there would be so many practical applications in medicine for botulism. :)

2 comments:

  1. I saw her this morning with her baggie of cereal and wondered if she was eating it. Then I saw you inject the water and thought, wow, that would be so convenient to just put food in your kid's stomach whenever they need it (rather than deal with hungry grumpies who refuse all food offered) but of course it's not that simple. I really hope the botox thing works!

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  2. I'm really pulling for you guys with the botox. I hope it works.

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