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She's a muppet

Recently, I have taken some deceptive photos like this:

(never mind the package of toilet paper on the floor in the kitchen)

 And this:
which make it look like Raya is eating. And while it may appear that she is eating a cracker, there is nothing but biting happening. No swallowing going on except for a few crumbs that happen to make it down the hatch. The rest of what she "eats" ends up like this:
 I don't remember how old I was when I finally realized that Cookie Monster wasn't actually eating the cookie, but today I realized that although Raya is making GREAT strides in her willingness to put food in her mouth (mostly crunchy things that she can bite), she's pretty much like a muppet. She is making NO effort to swallow the crumbs and still goes to pretty good lengths to get them out of her mouth. It is still progress though and we're happy as can be with her recent interest in biting food.

We are also very excited about this:

This one was snapped about half a second after a giant stream of water shot out of her mouth:
The pictures are still rather deceptive. There is a lot of water coming out of the bottle and a LOT running down her face or being spewed across the room when she tries to swallow & it goes down the wrong way (bring on the swallow study next week!) BUT the important thing is that she actually LIKES the water and likes the way it feels in her mouth and she is really trying to swallow it. That, my friends, is HUGE progress.
Thanks to my absentmindedness (is that all 1 word??) last week when I forgot to clamp her G tube & take off the drainage bag while we had dinner, we were able to see that she did actually swallow a few little crumbs. And some toilet paper/kleenex. And another piece of a paper out of a dvd case. It is very exciting to see her start to make little bitty steps towards eating, even if she does still seem to favor paper products and rocks. :)
She's such a ham lately. All she has to do is see that there's a camera in my hand and she yells, "BEEEEEE!" (we have the kids say "me" for pictures instead of cheese) and pulls this face:
 And as you can see, the main objective of her "lunch" was to make the biggest possible mess with 1 cracker and a cup or so of water.
I would say mission accomplished. :)

I had to schedule an appointment with the surgeon to check out Raya's GJ tube. Not too excited about that especially since the soonest we could get in is Tuesday and we already have 2 other appointments on Tuesday. Somehow Raya ended up with 6 appointments next week, which will break her previous record if we end up going to all of them.
I'm pretty sure it will go a little something like this:
Me: Raya's J port keeps leaking bile.
Surgeon: (looks at tube) It seems to be leaking bile. We need to change it. Call IR (interventional radiology) and make an appointment. Nice to see you again. Goodbye.
Me: Okay, thank you. Goodbye.
I'm SOOO tired of the gross yellow spots on the front of her shirt from the tube leaking and having to try and keep the bile off of her skin. I've been taping extra gauze around it but she loves ripping that off so it doesn't stay there very long. Hopefully soon we can say goodbye to the leaky tube!


  1. Looks like some progress--even if the water is all down the front of her, she has to be swallowing a bit of it!


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