Skip to main content

So much silliness!

I don't want to jinx myself but Raya seems to be starting to feel better. She and I have gotten to sleep in our own beds for a couple nights in a row now. It's been lovely even though I've ended up being up really late anyway. We had an interesting day today. I'm not sure if it was because we accidentally missed a dose of one of her meds last night or if it's because she's not quite back to herself, or if it was just Raya being Raya, but she was in rare form.

She was very happy to go see her OT today. She was out last Friday so Raya has really missed her. For whatever reason, Raya wouldn't talk during OT. All she would do was make little animal-ish sounds and her funny hand gestures that she does with the sounds. When her therapist made her answer a question out loud, she would state at her with a cheesy grin and not answer for a minute or two. Then when she did answer, it was a one or two word answer that was barely even a whisper. She was acting silly the whole time we were in the therapy area.

After OT, we walked to another room for feeding therapy. I knew it was going to be an interesting day at FT after the way she'd been during OT. I had brought her buckwheat pancakes and a little container of syrup but when I opened the syrup, I discovered that it was completely hardened. Oops. There was a jar of grape jelly in the fridge but that was undoubtedly cross-contaminated with wheat so we didn't want to use it. The other alternative was applesauce since they had single-serving cups of it in the kitchen. Raya was okay with that so we went ahead with it. I cut up her pancake and put applesauce on it and the silliness began.

Her hands were talking to each other today. She's done that during feeding therapy before but this time it was a lot worse. She was SOOOO distracted and totally off in her own little world. She was chattering back and forth with her hands, who were taking turns holding the fork and helping each other lift it up to Raya's mouth. They weren't very good at getting the pancake pieces into her mouth and she wasn't doing a very good job of taking the bites off the fork with her mouth either. I normally try to be involved in therapy sessions but this time, I mostly just sat back and let the therapist deal with her. I wondered many times if the therapist realized what Raya was doing because she would respond to things Raya had said (or what she thought Raya had said) when really, Raya was not talking to her, she was making one hand talk to the other hand or else talking to her hands. It was comical but only because I didn't have the energy to be frustrated by her lack of cooperation or snail pace at eating her pancake. Sometimes I appreciate when she "misbehaves" in front of her therapists because then they know that it's not just me that she does these behaviors for. She wouldn't listen to her therapist either! I discreetly took a few pictures with my phone because she was being so silly but I didn't want her to know that I thought she was being silly.
Right hand standing on the table while left hand waves the fork around
Dancing hands...
One hand {barely} holding the fork while the other one supports it
One hand helping the other hand hold the fork to poke a piece of pancake
One hand "standing" on the table so the other hand could stand on it to get a boost and reach her mouth with the fork
Playing iPad games in between bites
So you can see that feeding Raya really is a "group" effort, haha. :) During other sessions it has taken less than half an hour for her to eat whatever it is that we have for her. This time she was eating clear up until the 50 minute mark and we ended up taking some of her leftovers home. She usually doesn't get to play her therapist's iPad until she's completely finished eating but today, she had to play every couple of bites or she completely lost interest and motivation, and it wasn't because she didn't like the pancakes & applesauce. She was just off in la la land, which was a common theme throughout the day.

Once we were at home, there was a constant level of chatter coming from her but most of it was unintelligible and made no sense. When we'd talk to her, she'd give us a happy but blank stare and make animal noises with hand gestures instead of talking to us. She was pretty moody too, which I think had to do with her stomach. In the afternoon, I had just gotten the mail in and was sitting at the table going through it. The kids were all sitting at the table looking at the slough of Christmas cards that came and Raya was jabbering nonsense to herself. Then in the middle of whatever she was saying, she said as clearly as could be, "Mommy, I just puked in my mouth. But my throat made it go back." So yeah, she's having some reflux. We're bordering on having to slow her feeds down again, which puts us teetering on the edge of needing to go back to a night feed. That would be another step in the wrong direction but if it makes her feel better, then we'll just have to do it. Right now, she really does feel better and have more energy when she's not being fed.

On the bright side, she's been tasting some new foods lately. I finally got her to eat the Glutino table crackers that I bought. It took several attempts but she likes them now. My plan is to use them to get her to taste other things. We started with putting sunflower seed butter on a cracker, which she didn't like, but she did like strawberry jam on it. I'm okay with her not liking sunflower seed butter because I would hate for her to get confused and think peanut butter is okay too. Since she likes them with jam, we had her dip them in applesauce. Then we were having BBQ sauce with dinner one night this week and she wanted to dip the cracker in that. She ended up eating 2 1/2 crackers and about 2 teaspoons of BBQ sauce, which added up to about 200 calories. Definitely not very nutritive calories but the important thing is that she's branching out and expanding her palate.
A couple days ago, I had given her a couple of crackers with jam on them and after she finished eating, she came up to me and said, "Mommy, my skirt is wet." I looked down and sure enough, her extension tube had come unclamped and everything she was eating was coming straight back out through the open extension tube. It was gross and I was bummed about the calories but happy that she at least ate the crackers.


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 …