Skip to main content

Miss Independent

Raya is turning into a big girl. Not that independence is anything new for her, but she's kicked it up a notch lately. Take yesterday for example. First, she took her shirt off by herself. Then she noticed that her extension tube was taped to her stomach but not plugged into her G tube, so she took it upon herself to plug it in. (I had left it unplugged on purpose in an effort to not ruin the backflow valve in the first week with the new tube, but whatever.) As she wad trying to plug the extension in, she noticed that the tape was peeling off and decided to do something about it. She went to the supply bench and took out a box of Hypafix tape. Then she tried to get herself a piece, but Hypafix has to be cut with scissors so all she did was unroll several yards of it. A few minutes later, she was standing next to me while I was getting something out of the fridge. I decided to give her some pedialyte so I handed her the bottle from the fridge that had about 2 oz left in it. Instead of putting it on the counter, she said, "I dit bweek." Which means, "I get a drink." I turned around in time to get this blurry picture: She took a swig of pedialyte and laughed a proud laugh. Then she tried to take another drink but tipped it back a little too far and and poured it down the front of herself and choked on it. She's learning how to take her clothes off and sort of how to put clothes on. Sort of. She's also very much into brushing her own teeth. She doesn't let me touch the toothbrush but she likes for me to brush my teeth at the same time so she can copy what I'm doing. She's been a lot more accepting of a good variety of foods lately. She bites and chews but is hardly swallowing anything. She's had a stuffy nose for 9 days now so it's harder than usual for her to coordinate her breathing and eating. I had a bit of a down moment about her eating (or lack thereof) when we were driving to therapy today. No particular reason, just sometimes the enormity of the task of getting her to eat is completely overwhelming. Most of the time I just don't think about the whole picture for exactly that reason. We celebrate when she does well and don't dwell on it when she doesn't. Anyway, she ate black beans again this week. She hasn't had them in a while because she had decided she didn't like them anymore but she got over it. :) She ate a couple tablespoons of them but had a lot of trouble with the skins on the beans. I had to help her get it all out of her mouth because she started to gag on them. The same thing happens when she eats grapes, so today I peeled them for her and cut them into tiny pieces to try and deter her from packing her mouth full. It seemed to help and she ate 3 grapes so that was exciting. :) Someday she'll be able to take care of her G tube by herself. She's been practicing on Tubie-rina. :) Last night she decided that Tubie-rina needed some gauze on her tubie so she ran to the supply bench and got out a packet of gauze. I didn't know she even knew where we kept it. :) She ripped open the gauze packet and put it on Tubie-rina's G tube. It was precious. :) She's also become quite the copycat. She copies everything I say, everything the big kids say and do, and even attempts to song along with the radio. I ate a bowl of Froot Loops for breakfast and she just HAD to have some too. With "meeowkh"in it. :) She ate most of the Froot Loops, took a sip of the milk, put the bowl on the table, and said, "I done, Mommy." :) It was only a couple tablespoons of them but she chewed/mashed and swallowed them and enjoyed herself in the process so I was happy. :)


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 …