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A blog about a girl and her tube

My name is Brandis and I am the mom of a beautiful, bright-eyed, red-haired, happy-go-lucky 9 month old girl named Raya. She loves baby dolls, things that make crinkly noises, crawling, getting attention from her older siblings, hearing her own voice, and standing up next to things. In most respects, Raya is a healthy, normal 9 month old baby. Except that Raya has a feeding tube. She is afraid of food, hates having her face touched, and gags & vomits when we put food in her mouth. I believe the technical term is "feeding aversion". :)
For the past 9 months, I've been writing about our experiences with Raya on our family blog. Little did I know back then how much of my life and our blog would be consumed with the details of Raya's medical issues. Although we have always tried to stay positive during this journey, there are times when I feel overwhelmed by her challenges and I can either choose to sugar-coat the situation or tell it like it is. Because a lot of my friends and family read that blog and I don't want people to pity us or our situation, there are a lot of things that I've left off of it but they are a very real part of our lives. For that reason, I've decided that it's time to give Raya's story its own forum. This will be a place where I share the story in all it's forms; the good, the bad and the ugly. I've debated with myself about doing this because I feel like there are so many people out there with WAY more experience and knowledge than I have, but I also feel like each family's experiences are different, unique and significant in their own way. My hope is that other people who are faced with similar challenges will be able to benefit from what we have learned and share their experiences as well.

Comments

  1. Hey, Brandis. Thanks for visiting and commenting on my blog. When I quit blogging a while back, I quit following others' blogs, too, so I hadn't heard about Raya. Looks like she's about the same age as Maggie. I bet they're doing a lot of the same things, except that one of my biggest problems with Maggie is trying to keep things OUT of her mouth! She tries to eat everything! Anyway, it's good to hear from you. I love Raya's big smiles, and it looks like you're doing a great job with her!

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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 …