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Exciting stuff happening...

I have been MIA this week for 2 reasons. 3 reasons. #1: I'm done with classes for the time being and have been trying to dig myself out of 4 months of minimal housekeeping. Eek. #2: My kids have missed me. The little girls and I have been playing games like Trouble (the Smurf version) and Go Fish, going to the grocery store (which Raya hated),
She was being an angry kitty. Who wants to go grocery shopping when they can't eat?
dancing to my '90s boy band station on Pandora, and I gave Kaida snapping lessons the other day (as in snapping fingers) and she was very excited about that. Kaida and I have been "snuddling" in the mornings after we take the big kids & Raya to school, and I actually cooked dinner a couple times this week too. It was fabulous. I love school, but I love breaks too. :) Reason #3: FEEDING TUBE AWARENESS WEEK!! In all caps! Because I'm so excited about it! It just so happens that FTA Week coincides with the A.S.P.E.N. Foundation's Clinical Nutrition Week convention and the regional Oley Foundation conference in Phoenix, all of which I'm also very excited about. There will be much more about that later in the week. Today, I finally got to meet my friend & colleague, Traci Nagy, in person. Traci is the founder of the Feeding Tube Awareness Foundation. She will probably never fully comprehend the impact that her efforts in starting this amazing organization have had and will continue to have on people all over the world who are dealing with tube feeding. For the last year, I have had the privilege of working with the most wonderful group of women on the FTA staff and I can't even begin to describe how fulfilling this has been for me. We are passionate about what we are doing because we understand it and live it every day. I could go on and on. I probably will later on in the week.

Oh yeah, I forgot, I did actually have a point. Traci and I met up at the convention center in Phoenix today to set up our portion of the booth in the exhibition hall that we will be sharing with the wonderful people from the Oley Foundation. Our booth is located in the corner directly across from the women's restroom, so it will probably be heavily trafficked. (ha ha) We had the privilege of taking part in discussion groups at the Oley conference this afternoon, which was both interesting and informative. One thing that can be very frustrating as a parent of a tube fed child is the lack of understanding between entities. The discussion groups consisted of medical professionals, enteral/parenteral nutrition provider representatives, parents, TPN patients, and others, and it was a great opportunity for all of us to gain insight into each other's perspectives on managing enteral and parenteral feeding. I'm very excited to spend the next couple of days at CNW!


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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 …