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Did I mention...

Did I mention that Donny has been out of town since last Sunday? yeah. He's missed out on all the fun this week but he's back now (or at least he should be, I haven't talked to him yet) so SOMETIME today, I will be going home to shower without having to think about everybody else's cooties that are in the shower (let's just say that the parent bathrooms & shower are not the focus of the cleaning crew's elbow grease :) and I'll get to see the big kids for a little bit. Raya will be very excited to see all of them too. She's missed her daddy a lot. Every time I've put the phone up to her ear when I'm talking to him, she gets so excited and her face just lights up.
As far as the little missy goes, I'm pretty sure we're going to need to do some more adjustments with her feeding & draining. Things are better but not quite where they need to be. We're still waiting on the results of the c. diff test but we did get moved to another room. We couldn't get out of that room fast enough! Since Raya was non-contact because the results of her test were pending, they told me that they had to put her in with another non-contact patient (OH, you mean like how they put a non-contact patient in with my HEALTHY child?!?) so we shared a room with a teenage boy last night. Awkward, I know. He's leaving today though and hopefully Raya's test results will come back negative and Infectious Disease Control will be kind enough to take her off isolation so she can leave her room. That would be fabulous. :)


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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…

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…

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 …