Skip to main content

OT

Raya officially started OT today. The whole OT thing is pretty foreign to me. In some ways it's similar to PT but the goals are very different. Raya's OT goals are all about helping her to gain body awareness and reduce her tactile defensiveness.
I know I keep saying this but somtimes I still have this internal struggle about whether or not Raya really does have issues or if it's just me imagining things or making mountains out of mole hills. Since I'm with her all the time, I'm used to some of her quirky little behaviors so I forget whether they're normal or not. Occasionally little things happen that validate my feelings that her "quirks" are more than just simple little things that will go away on their own and I'm grateful for that because it makes me feel not so crazy.
Okay, so anyway, our OT session today was one of those things that makes me feel better about putting Raya through all the therapies that I drag her to. Her OT started out by explaining a little more to me about what we're trying to do and how to go about it. She showed me some things that we can do at home. Then she had her play with a few different toys and crawl around. We tried to get her to crawl through a little collapsible play tunnel but she wasn't having it. :) She put toys in it and tried to get Raya to get them out, but Raya would reach in just far enough to get the toys out & that was it. The one time she got her whole body in, she totally freaked out and couldn't get out of there fast enough. We had Kaida crawl through the tunnel to try & lure Raya in but she just kept crawling around the tunnel to meet Kaida at the other end.
Then she tried to get Raya to crawl over a bean bag chair that didn't have very much stuffing in it. Raya HATED it. I'm trying to even think of how to describe her reaction because it was more than just a baby not liking something. She was very distressed by it. As strange as it may sound, it was one of those validating moments for me because obviously that's not a normal reaction. I know this one little example might not seem like a big deal, but it's just one example of a whole pattern of behaviors. Raya is a very smart little girl and she has demonstrated that by how well she has learned to compensate for and avoid things she's uncomfortable with.
Now that we're back to pushing her a little more in her therapies, some of those things that she avoids are becoming more apparent and it evokes 2 different reactions for me. One is a reaction of sadness and sympathy for her that her experiences of her environment are so skewed from a normal perception. The other reaction is that I'm SOOOO excited to move forward with therapies and so grateful for the people who have helped direct us to what she needs. She had feeding therapy today too and even though she was really tired and cranky, she was very receptive and cooperative with her FT. It is becoming more apparent to me that it's going to take time and probably a lot of time to get Raya to where she should be, but I'm feeling very optimistic about her ability to get there. We just have to be patient and go at her pace.

Comments

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 …