Skip to main content

Raya's new video

I had planned on making a new video for Raya for Feeding Tube Awareness Week this year but because I was so busy working on the official video for the Feeding Tube Awareness Foundation, I didn't have time to get it done in time to post it on the first day of FTA Week. Or the second, third, fourth, fifth, or sixth day. I did finally finish it on Sunday and posted it on facebook but I haven't shared it here yet.

As I started thinking about what direction I wanted to go with the video, I decided that I needed something more upbeat and peppy this time. I need something that I can watch when I start to get stressed out because of the pressure I feel from outside sources in regards to Raya. Every parent feels pressured to make sure that their kid measures up to everybody else's. Being the mother of young children often feels like a competition. Whose kid learns the ABCs first, whose kid is potty trained first, whose kid can read before kindergarten, whose kid can start kindergarten at the youngest age, whose kid goes to the best preschool, and so on. When your child has special needs, the pressure to just be "normal" gets overwhelming. We have long since passed the "normal" time frame for things other kids Raya's age have been doing for quite a while. Don't get me wrong, I'm okay with it, but sometimes I feel like other people aren't and I don't want Raya to ever feel like she's "lesser-than" just because of her medical issues and their repercussions. If you are the parent of small children, whether they have special needs or not, don't buy into that crap. Your child does not need to measure up to anyone's standards but his or her own!

Anyway, I chose two songs that I feel are good representations of how I feel about Raya, and how I want Raya to feel about herself. She is exactly the way that God wanted her to be when He put her on this earth, and we are embracing life the best that we can and not letting her difficulties stand in the way.

Here's this year's video:

Raya FTAW 2013 from Brandis G on Vimeo.


Popular Posts

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 …