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Poor baby :(

Don't be fooled by her cute little smile. My girl who usually sleeps great all night long has been waking up screaming, not taking naps, clingy, whiny, fussy, fidgity, and did I mention waking up screaming? (and no, it's not night terrors, it's reflux) This morning I had to get her out of bed and put her in the stroller in the living room where she immediately stopped screaming and went back to sleep for a couple hours. (Santa brought it to her. It reclines to a very comfortable angle for her. I love it.) She's also had blood coming out of her drainage tube again and tugging at the tube like it's bothering her. When she had her testing in Ohio done, they took the tube out for one of the tests and then had to put in a slightly smaller size when they replaced it because they only had a 1.5 or 2.0 and her old one was a 1.7. I picked the 1.5 because the 2.0 would have been too big and would have leaked and probably allowed granulation tissue to grow again, which is awful. (PS the 1.5/1.7/2.0 is the length of the part of the GJ tube that is between the outside of her stomach and the inside of her stomach & is measure in cm.) Probably going to need that changed, darn it.
So, once again we've come to a point of needing to make some changes with her. I'm pretty much over the disappointment of not having anyone find something that they know how to fix for her and I'm coming to terms with the fact that we have no idea how or how long it will take to make her better. Since we don't know how long the road ahead of us is, I'm ready to start walking down it.


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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. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

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 …