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A Tear-Jerker

This morning, I got a text message from my friend that there was something I should watch on the Today Show, so I turned it on. Here's what the story was:

Compared to other points in the saga of Raya & her feeding tube, I rarely get emotional anymore. I don't know if it's because right now I'm completely occupied by getting ready to take her to Ohio + getting ready for Christmas + just being busy taking care of her & 3 other kids or if I've just become desensitized but it takes a lot more now to get to me than it used to. For some reason though, by the end of the story, I was in tears. It struck a nerve, as I'm sure it probably did with every other parent of a child with a feeding tube. Now that Raya's past her first birthday, the reality of how difficult it is to wean a child off of a feeding tube, especially a child with a more invasive GJ tube, is starting to set in.
As much as I hope that our trip to Ohio will help us put an end to the symptoms that have made her afraid to eat (i.e. vomiting, reflux, abdominal discomfort, etc.), I am feeling cautiously optimistic about what happens after that. I'm finding myself wondering how long it will take to undo the psychological damage that has been done and then how long it will be before she is good enough at eating to take in enough calories by mouth. Before she can begin to eat, she has to get over her fear of food, and then she has to actually learn the mechanics of eating and be willing to eat a healthy diet. That's a tall order for a kid who won't eat anything at all other than sucking the grease off of a piece of bacon. :)
I do feel like we have had a small breakthrough this week though, that started with bacon. Before her 2nd bacon experience, any time small pieces of food (or paper, fuzz, string, etc.) would be in her mouth, she would panic, gag and throw up to get them out. Either she wasn't able to spit them out or didn't realize she could/should spit them out, and she never even attempted to use her fingers to get unwanted food or objects out of her mouth. When she had bacon the second time, little crumbs broke off and she kept them in her mouth for a little bit and then spit them out and took the bigger pieces out with her fingers. HUGE breakthrough.
Fast forward to this afternoon, Kaida and I had gotten chicken nuggets and fries at Mickey-D's. Just for kicks, I took a little bite out of a fry and then held it up to Raya's mouth. To my surprise, she opened her mouth and leaned toward it and then held it between her little teeth nubbins for a few seconds while looking at me out of the corner of her eyes and grinning. Then a piece came off in her mouth and she immediately spit it out onto the floor. I never thought I'd be so proud of my kid for spitting food out onto the floor but I was. Then I tried with a chicken nugget and the same thing happened. She had a little piece break off, held it between her lips & teeth for a few seconds and then pushed it out onto the floor with her tongue. Then she got a bigger piece and that made it past her teeth onto her tongue. I think she was just getting a feel for it and maybe could taste it too because she just kept it there. After about a minute, I started to worry that she'd end up having it go back toward her throat & choke on it so I pulled it out of her mouth. She didn't gag & throw up then either so I was pretty happy about that too. :)
Well, anyway, I just thought I'd share the story from the Today show because I think it's a pretty accurate representation of what it's like to be the parent of a child who won't eat. Heck, maybe someday we'll be on the Today show. :)


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