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We are still on our "sugar powder" kick. If it in any way, shape or form resembles sugar, Raya will eat it. Even if it's flour or berry flavored protein+creatine powder (what she's eating in the picture). I always thought that when she finally started eating I'd be so excited that I wouldn't care what she ate but I didn't realize she would be drawn to bizarre things like powders and Crisco. I guess beggers can't be choosy.
Honestly, I'm surprised that she likes the texture of powdered sugar because it's so light and has very little sensory input. Typically she can't stand things that don't have during sensory input. I wasn't surprised that she ate lemonade mix because it's gritty and has a strong flavor, but I don't get why she likes the fine powders. I suppose that nutritionally, protein powder is a little better for her than lemonade mix or sugar, but it scares me a bit because she doesn't care what the powder is. If she thinks something might be edible, she'll try it unless it's something she knows is food that somebody wants her to eat. Most kids can readily discern between good tastes and harmful or non-food tastes but Raya doesn't always get it. I just keep telling myself that this is another phase of oral sensory exploration and she'll get tired of it at some point and move on to something else. Hopefully the next thing will be something more normal and food-like. :)


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Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
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Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …