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Friday, April 1, 2011


And just like that, Raya has decided that she no longer needs to gag and vomit when anything gets near/in her mouth. I don't know why the sudden shift but I'll take it. This week alone, I have been able to get the following things between or slightly past her lips:
*strawberry Dole fruit chiller (popsicle)
*fish stick
*metal spoon with cereal milk on it
*metal spoon with melted ice cream
*french fry
*Vanilla-flavored Peptamen Jr. formula (from a syringe and a special sippy cup that doesn't require sucking)
*water from a straw (I put my finger over one end and then put the other end in her mouth & let go so the water ran in)
*granola bar
*my finger (I let her gnaw on it where her molars are trying to come in)
*a fork with spicy sauce from the chicken I was eating
*Wendy's frosty
*Keebler grasshopper cookie

Okay, now don't get too excited. Just because she let a few things touch her mouth without gagging doesn't mean we're going to be slapping a "return to sender" label on the ol' Zevex (feeding pump) anytime soon. She has done SO well this week with letting food near and sometimes in her mouth and we're excited to see that much progress. She's rejected a LOT of things but we're happy with what she has done.
She still has a long way to go. It's like someone who is deathly afraid of water dipping their toes in it. They're still not ready to jump off the high dive, but it's major progress. Most of the things on that list didn't stay in or near her mouth very long. With most of them, she'd let them in between her lips or else bite down gently on them and that was it. With the liquids, she'd taste them a little bit and then rub her tongue with the back of her hand. A lot of times she makes funny faces and spits them out or wipes them out with her hand. She has demonstrated many times the fact that once something is in her mouth, she doesn't know what to do with it. She's forgotten how to suck, although lately she's been sucking on wet washcloths and sometimes the end of her extension tubes (gross, I know). She also doesn't know how to move food or liquid from the front of her mouth to the back so she can swallow it. She does pretty well with tiny amounts of liquid because she's good at swallowing her saliva, so as long as I only put in a couple of milliliters at a time, she can swallow it. If she feels like it. :)
The progress she's made this week has made me feel a lot better about our decision to go ahead with the GJ tube. Not that I didn't already know it was the right thing to do for her, but I've second guessed myself many times since September when we first tried to get it and October when she got it. I felt like putting it in was taking her as far as she could possibly get from oral feeds without going on TPN (IV nutrition, which she's never had to do). Having to get her to want to eat and then teach her how to eat was going to be challenging enough, but we added retraining her stomach to handle food to that list as well. Now I'm feeling like giving her stomach 5 months off from digesting food was the best thing we could have done for her. Not only did it allow the bleeding in her stomach to heal, but it also gave her a break from vomiting large amounts of everything that went into her stomach several times a day. Who would WANT to eat when you feel like vomiting all the time?

Like with a lot of things, there has been a trade-off for the new progress she's made. She has now gotten into the stage that most babies do when they're 6 or 8 months old where they put EVERYTHING in their mouths. Her favorites are rocks and paper. Yesterday we were at the park and she found a rock that was about 4" in diameter and maybe 1/2" thick and she put it between her teeth and carried it around like that. Until I took it away, which made her cry. I also had to keep prying little pebbles out of her mouth the whole time we were there. Before that, I had to scrape a chunk of soggy paper out of the roof of her mouth where it had been sitting for a couple of hours. I could tell she had eaten paper (the colored specks around her mouth and the brochure on the floor with a hole out of it were dead giveaways) but didn't see it in her mouth until later when I laid her down to change her diaper. She's scaring me a little because every time I turn around, there's some little thing in her mouth. Ironically, she frequently picks up crumbs of whatever the big kids drop on the floor but she never puts them in her mouth. Only non-food items go in her mouth. How she's able to tell the difference between a dried out black bean and a rock, I don't know. She's a smart one. :)

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