Skip to main content


Raya got a good start to her day today. She ate 2 tablespoons of plain Greek yogurt and a few pieces of cinnamon toast crunch for breakfast. Mondays are her favorite days because her respite provider comes. She is very high on Raya's list of favorite people. She came this morning for a couple hours while I caught up on some things. I came downstairs and found her covered in children:

She's a very good sport and the kids all love her. Kaida really doesn't like the rule that we can't leave the other kids with her! :) While she was here, Raya ate a tablespoon of peanut butter and then had a short nap. Too short. It went downhill from there. She'd been in her bed for about an hour (but not asleep the whole time) and started crying loudly and angrily. I assumed she'd be standing up waiting for someone to get her out but when I walked in, she was still laying down and crying. I asked her if she was okay, if she had any owies, if she wanted out, if she wanted to stay in, if she was hungry, etc. and the answer to every question was a big fat no. Finally I just disconnected her from the pump and told her that when she was ready to come out, she could come out. Of course then she screamed her head off when I turned around and walked out of the room, but I still walked out. She's been testing the waters with me a lot lately in every single thing we do. She says she wants to do something herself so I let her, but then she just sits there and doesn't do anything. There aren't enough hours in the day for me to let her do that for every single miniscule task, so I've put my foot down. Who knew a2 year old could be so friggin' good at mind games.

After her 30 minute screaming fit, she finally came out of her room to play with the big kids. For the rest of the afternoon and evening, she wasn't interested in taking a bite of anything resembling food. It was odd considering that she always wants at least something in the afternoon if for no reason other than seeing the big kids eat. The only thing she wanted was ice. Cole has a thing with putting ice cubes in his glass and then leaving it on top of the microwave. Being the smartypants that she is, Raya pushed a chair up to it and stole ice to munch on. By dinnertime, she'd managed to eat 5 ice cubes and somebody had given her a washcloth to hold them in so her hand wouldn't freeze. She has very little sensitivity to cold and didn't care that her hand was cold and red. She was really crabby at dinner. I had decided earlier that I was going to have her try some chunky unsweetened applesauce with cinnamon in it but she was in no mood for it. I put a teaspoon of the applesauce in a cup with a teaspoon of Greek yogurt and she had a fit. She wanted nothing to do with it and just wanted more ice. I wasn't giving in though. The tricky thing about feeding therapy is that you only win when the kid thinks they're winning but knows that you're in charge. I think it's a little like hostage negotiations. I could tell before we even started that she wasn't going to have anything to do with it but she needed to at least taste something. She kept whining for ice so finally I told heer that when she kissed the soon with apples & yogurt on it, she could have ice. She very reluctantly leaned forward and I put the spoon to her lips. She then got a funny look on her face and loudly said what I think can be interpreted as, "Hey! It's on me!" And wiped her lips with her hand. Victory for me because she tasted the new food, and victory for her because she did it and got her ice.

Days like this are when I pray that Heavenly Father will remember me and be extra kind when Raya is a teenager. Heaven help me if we don't learn how to do things without every little detail being a power struggle.


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 …