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FTA Week Wrap-up

I just wanted to thank everyone who took the time to read all of my very long-winded blog posts about feeding tubes. I've gotten so many nice comments from people saying that they've learned a lot this past week and that makes me SO happy. I'm so glad that participating in FTA week has allowed me to share some insight into life with a feeding tube. I feel like I need to clarify a couple things though.

First, as difficult as taking care of a feeding tube CAN be, we are at a very good place with Raya now. The difficult time was during her first 15-16 months when so much was happening with her and we were trying to figure out what it was and how to fix it. We are no longer in that difficult "discovery phase" with her, thank goodness. We don't have big scary question marks hanging over our heads anymore like so many of our "tubie friends" do. (just little ones :) We have moved on to more of a maintenance and forward progress phase. That comes with challenges like convincing her to eat and teaching her how, which can also be stressful but anything that doesn't require hospitalization is ok with me. :)

Second, please don't be fooled into thinking that I am somehow superhuman just because of where our lives have taken us the last 2 years. Everyone has their own challenges in life and they come in many forms. This one just happens to be in the form of a little girl who didn't/couldn't/doesn't eat and goes to a lot of therapy appointments. People give me too much credit. I didn't choose this trial but I've done the best I could to accept it and handle it. Well, actually if I'm being honest, I don't always do my best, I haven't always accepted it, and I don't always handle it like I should. I think most people could say the same things about a difficult trial in their own lives. There's also no way I could have "handled it" without the support of a great husband who is also a great dad, and a lot of friends & family members who have stepped in to help where needed. But thank you all for the nice things you say to me. :) This trial really has been a huge blessing in many ways and we are grateful for everything we've learned. And how could we be sad when we've got this around us every day:

"God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family." ~Author Unknown


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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 …