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Keeping me on my toes

If I have bags under my eyes, it's probably (still) Raya's fault. :) Now that she is pretty much back to digesting like a normal human being (aside from her food's method of entry, of course) she seems to have an endless supply of energy. I also still think her busy-ness has something to do with her sensory issues, and now that her stomach is more heavily involved in digesting her food, her hypersensitive gut makes her fidgity.
Anyway, every time I turn around lately, Raya is on the kitchen table looking for abandoned food, under the kitchen table looking for food that's been dropped on the floor (or thrown by her at an earlier time) or climbing over the back of the couch or climbing up to the kitchen counter to get into whatever is on it or getting into things in my room or getting into things in the pantry or getting into things in her medical supply bench or getting into things... Are you catching the recurring theme here? Basically she's like a normal 21 month old (tomorrow). Only I don't remember the others being quite as busy as her. I at least don't remember any of them climbing like she does at this age.
Saturday afternoon, Ashtyn came in the kitchen and said that Raya was on the bathroom counter. This was about 5 minutes after she had come to tell me that Raya was getting into my makeup bag on the bathroom counter. I went in to check things out and here's what I found:

I think she was saying, "Hi Mommy!" and/or "Hair!" when I took this one.

And we now know how to turn the water on & off. Fabulous. :)

She is one silly little girl!

Today was really fun too. Kaida and I were having "Mommy and Kaida Cooking Class" this morning while the big kids were at school so Raya was sitting in her high chair (aka her favorite place in the whole wide world right now) having a "nah" (snack). I took a picture of Kaida cutting out biscuit dough and then Raya started saying, "ME!" to tell me she wanted her picture taken, so I took one:
Then Kaida & I finished up what we were doing so we could get ready to take Raya to therapy. About 15 or 20 minutes after I took the first picture, I turned around and she was holding her G tube in her hand and saying something, I forget what. When she first got her G tube I was paranoid about having it come out but it's kind of like getting a new car. Once you put the first dent in it, you can relax because you've already done it once. It was the same with the G tube. It got pulled out once, we put it back in & everyone survived so when it happened today, it wasn't a big deal. I don't understand why all the sudden she's messing with it though, she never messed with the GJ tube (thank goodness).
Anyway, since I had the camera right there I took a picture before I put the tube back in:
Someday, it really will look like another belly button. :) Honestly, the worst part was all the gross stuff that came out of her stomach when the tube wasn't there to hold it all in. Her shirt was soaked and she was covered with whatever had been in her stomach. Well, actually, the fact that she kept sticking her finger in the hole was kind of gross too.
I put it back in, no harm done, and we went on our merry way to OT. I do think something funky is going on with the balloon on her tube though. The water level fluctuates more than any other G tube (or GJ) that she's had. Plus, if you look in the picture, there's no water in the balloon at all and that was right after she had pulled it out, so there should have been water in it. I've checked the balloon though, and it still holds water so I'm not sure how it's leaking.
Oh, and the last couple of days her stomach has been doing this really creepy thing where it acts like it's trying to digest her tube. I tried to lift up the tube a little yesterday to put gauze under it and it was like there was someone on the inside of her stomach pulling it down so I couldn't get under it. SO wierd! She has a weight check tomorrow so I'm going to bring it up with the nurse. Busy little girl!!


  1. My stomach often tries to digest my tube. My tube usually sinks into my stomach, stays there for about 5-10 seconds & then releases & I think that it's going to pop right out of my stomach. When it first started doing that it hurt a lot. Now I'm use to it. So what is the cause...being hungry! Now that I have a tube my stomach doesn't growl out loud much, but it does move a lot and sucks in my tube as it's "growling" or moving around. As long as I eat at regular intervals, it usually doesn't have this problem. So maybe Raya is learning what it's like to be hungry!!! :)


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