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The rules of the game

Have you ever played a game with a little kid who keeps changing the rules? That's pretty much what life with Raya is like these days. She's SO over oatmeal now. She did great with it the first couple days but yesterday, she only ate half of what I gave her (75 calories). Today she BEGGED me for "mee-o mee-o", took a couple little tastes and then dug in with both hands and plastered her entire upper body with it. Then she started crying and saying "Owie!" because she had oatmeal all around her eyes and pretty much everywhere else. I wiped it off of her face and then said, "Okay, eat one bite and then you can get in the shower." She said, "O-day." and opened her mouth but never even attempted to swallow it. I'm not sure if we'll be able to get her to eat oatmeal again anytime soon.
That's what I mean about Raya changing the rules. Just when we think we've figured something out, she changes her mind and we have to keep looking. I think I'm going to try putting whatever we have for dinner tonight in the blender and see if she'll eat it. Pretty much anything can be made into the texture she seems to tolerate if it's in the blender. :) I know she likes spicy things (which I'm sure goes really well with her reflux :) and she likes strong, bold flavors, so I kind of don't blame her for not wanting oatmeal with banana. BORING! I'm glad her feeding therapist is coming today because I need some guidance. :)
I finally bit the bullet and asked the nurse to ask the doctor if we can wean Raya off of one of her meds. It's one that I pretty much LOATHE for several reasons. The reason I want her off of it is because A. she hasn't puked for over 2 months (almost 3) and its purpose is to keep her from dry heaving/vomiting in the early morning, and B. because it's the one that threw off the results of the allergy testing she had done, which I would like to have redone at our next allergy appointment, which is coming up next week. Not to mention that I get really tired of having to get it refilled every 2 weeks and then barely being able to squeak by with it because they give us the exact amount. Her dose is only 0.65ml, so a 2 week supply is only 9.1ml (slightly less than 2 teaspoons). It's ridiculous!! Then there's the part about how it's a neuro-transmitter and she can't stop taking it abruptly or it could cause serious side effects. I'm just ready for that monkey to be off our backs.


  1. I was googling kangaroo joey vs infinity and up popped your blog. Too funny. (I met you in the hallway at church a few weeks back.) It was good to read Raya's journey from the beginning. Knowing what you know now, would you stick with the Joey or switch to the Infinity? Tyler isn't continuously fed but we have been doing more and more bolus feedings lately, not sure what's in our future. (I'm sure you can relate.)


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