Skip to main content

Good thing she's cute

Good thing she's cute. I've been saying that a lot this week. (and it's only Tuesday!) We started our "Monday" a few hours early. As in, Sunday night. Raya fought her sleep meds that night, at least in part because she got it in her head that she wanted to watch Caillou (which has got to be one of the WORST kid shows ever created). It was bedtime and we said prayers and then sent the kids to bed, but right about then, she decided she wanted to watch Caillou so for the next 30-40 minutes, she repeated over & over again, "I WANT TO WATCH CAILLOU!" She cried, flopped around on the floor, and kept repeating it over and over. She took a couple of breaks, and finally after about an hour, she fell asleep on the couch. The lights were all off by then because the dark is calming for her. Shortly after she had finally gone to sleep (in a very awkward position on the couch), Donny turned on the kitchen light and decided to take the risk of moving her a little bit to make her more comfortable. When he got close to her, he realized that the clamp on her extension tube had come open and she was laying in a rather large puddle of stomach contents.
By then, it had been 3 hours since she had eaten her 3.5 oz serving of "pudding" (chocolate Neocate + thickener), and it was hard to say how much came back out of her stomach since it was spread all over the couch, but it was more than there should have been in her stomach after 3 hours. Usually, what comes out smells pretty much the same as it did when it went in but this time it smelled like chocolate Neocate and vomit. It was pretty disgusting. Chocolate Neocate has such a strong, permeating smell that if we so much as forget to rinse out a bottle or bowl right away, the whole house smells like it. So yeah, the couch was permeated with chocolate Neocate and vomit smells. The worst part was having to move her to clean up the mess. We've noticed that when she gets woken up after she's had her sleep medicine, she is beyond crabby. It's not a good thing to have her wake up after she's had it, and especially when she was so upset & had such a hard time going to sleep anyway. We got her cleaned up and changed her clothes and then I attempted to scrub the yuck out of the couch. I scrubbed the cushions over the kitchen sink with soapy water that had a splash of cider vinegar added. That got the vomit smell out but didn't touch the chocolate smell. It had gotten in between the cushions, run down the crack, and pooled under the cushions, so there was a lot to clean up. I did what I could and then had to lay on the other couch with her because she was still crying. Thankfully, I didn't ruin the cushions when I got brave and took the covers off & washed them. I ended up doing the cushions on the other couch too and the couches haven't looked this good in years. :) I also found the Lego guy's hair that's been missing, along with a whole lot of other stuff under the couch cushions.

*deep breath* So that was Sunday night. Then there was yesterday. We managed to get her to school somewhat on time in spite of the big kids moving slow as molasses all morning. While she was at school, Kaida and I went to the post office to pick up a very exciting package. It was a copy of a book called SENSE-ational Mealtimes! that was written by an OT and dietitian in Australia. They emailed me a few months ago to ask permission to use a couple of pictures of Raya in the book. I was excited to get it because she's in it, but I was even more excited once I started reading the book because it is going to be a phenomenal resource for parents whose children struggle with mealtimes due to sensory processing difficulties. (full review will be forthcoming when I've read the whole thing)

When we got home from picking her up at school, I was in the laundry room spraying stain remover on the couch cushion covers and I looked over at her and realized she was holding her G tube in her hand and playing with it. I don't know how it came out but it was out. I love how her balloon is always super lopsided. I think it's because of the shape of her stomach where the tube is located or something but I don't know.
We'll be watching this one closely in the next few days because there was less water in the balloon than there was supposed to be. Her stoma still looks better than it did before the scar tissue was removed but I can tell that we will probably have to have that procedure done again sometime in the future.
Putting the tube back in less than a week after her traumatic experience at the hospital was not a pleasant experience. She didn't want me to put it in and made it difficult. I told her if she didn't let me put it in, we'd have to go to the hospital and let the nurses put it in. She didn't like that idea but still didn't want to hold still. I got Kaida to come hold her hands and that distracted her for the half a second that I needed in order to pop the tube back in. She cried for a couple minutes but I think it was out of fear, not pain. She got over it pretty quickly though.

About 10 minutes after I put her tube back in, I heard Kaida say, "Raya, what are you doing?!" in her tone of voice that means she doesn't want to get in trouble for tattling but she really wants to tattle. I walked into the kitchen and Raya was on her belly on the floor licking the powder from the bottom of a box of cereal that she had dumped out onto the floor. Aside from being totally disgusting, the cereal had wheat and oats in it, both of which she's allergic to. As I was pulling her out of the mess so I could clean it up, she was reaching with her other hand to keep picking crumbs up off of the floor. When I had her stand up, she started licking crumbs off of her pants. I went to get the broom & dustpan and had to pull her out of the mess again when I got back 10 seconds later. She would NOT stop going after the crumbs, even as I was sweeping them onto the dustpan.

When the big kids got home from school, they ate crackers for a snack. Of course that led to crumbs all over the table & floor, which Raya immediately located and started eating. This morning she was stealing cereal out of Kaida's bowl when she stepped away to get the milk out of the fridge. I don't know what to do with her lately! She's been really aggressive and stubborn the last few days too. I'm hoping that having her OT back in town will help. I also have to say that I really REALLY miss her respite provider already. So does she. I'm crossing my fingers that we'll have our new one very soon.


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 …