Skip to main content

Protesting everything

My girl had kind of a rough weekend. We now know what happens when she goes off of her Prilosec cold turkey. It was an unfortunate result of me forgetting to get prescription refills fromm the doctor at our appointment last week, the medical assistant I talked to at the doctor's office telling me to call the pharmacy and ask them to fax over a refill request, and the pharmacy not faxing it like they said they would. (side note, what's the point of having a refill line at the dr's office if someone's just going to answer it and tell you to call the pharmacy??)

I called the pharmacy yesterday and they said they had faxed the request but never heard back, so I called the doctor's office. They had never gotten anything from the pharmacy, which did not surprise me in the least, which was why I had called the doctor's office instead of the pharmacy to begin with. I know who I can and can't count on to get things done! Fortunately when I called the doctor's office yesterday morning the person I talked to was very helpful and the pharmacy had both of her prescriptions ready in an hour, which has never happened before. I don't know what she said to them but it worked. :)

Anyway, we ran completely out on Friday and ended up going all weekend without it. She didn't seem outwardly miserable or anything but if you listened & paid attention, you could hear her refluxing and swallowing. I lost track of how many times she said, "Mommy, few-mahmow," which translates to, "Mommy, there's puke in my mouth." She also had a major decrease in her desire to eat, which I'm sure was fueled by me making her eat 2 bites of horribly disgusting soy yogurt. Not only did we see those changes that were obvious direct results of no reflux meds, but we also have seen behavioral and emotional changes. She's wearing me out. We had a very rough day today.

This morning we went to the last of the summer movies. She's always squirmy but today she was out of control. She climbed all over Donny and me and a couple of other chairs and the stairs and the arm of my chair. He ended up taking her out for a walk for about 15 minutes and when they came back in, she asked me to take her to see her therapist. You know a kid is having issues when she's asking to go to therapy. We left the movie early to go to OT and even walking out to the car was an ordeal. She was having a problem with wanting to hold my hand but not being able to tolerate having me touch her hand. It sounds contradictory, I know. She held her hand up to me but kept it straight & stiff and wouldn't hold onto my hand.

The 30 foot walk from the car into the clinic took us 5 minutes because she had to talk to the flowers on her way in. When she got in the door, she kicked off her shoes and started looking at books. Her therapist came to get her and Raya got upset because I only let her bring one book with her. That one little thing set the tone for the while therapy session. She refuses to talk when other people ask her questions, completely ignores any instructions she's given, gets upset if you try to impose your will on her, and can't get over it when something upsets her. She's having a very hard time regulating her emotions. It's ben an ongoing thing but this week it's definitely worse.

I usually stay in with her during therapy. I like to see what she's doing and have her therapist explain things to me, and I like to be a part of her therapy. I think that's important because I need to be able to keep things consistent at home. Today I had to leave though. She wouldn't do anything and wouldn't stop clinging to me, so I left. Heer therapist was trying to get heer to say "please" to another therapist and Raya wouldn't do it. Instead, she kept cocking her head to the left (the torticollis side) and rubbing her eye. She got upset when I left (hello separation anxiety) and one side of her face got really flushed and she kept torquing her neck to the left. They did get her settled down after a few minutes. I came back in about half an hour later and she was doing better. She got to jump in the air mattress and chase bubbles for a few minutes and that made her happy.


That cute little boy in the picture was rather smitten with Raya. He kept watching her instead of doing what his therapist was trying to get him to do. :)

This appointment was all about getting her to respond when someone is talking to her, getting her to use words, and getting her to follow instructions. It can be a tall order for any 2 1/2 year old but with her (at least today) it was pretty much a lost cause compounded by the increase in reflux and crummy sleep. When the appointment was over, she had to hold my hand on the way out (her therapist made her) and she did pretty good until we got to the door to the waiting room. Then she had to sit on the little chair next to the door. Then we had to put the book away in the waiting room without taking more books off the shelf. Then we walked outside and she had to stop and play with the flowers again.

I started the car and she casually turned around and sauntered to the door to get in. She ate a Nutrigrain bar in the car on the way home (one thing she does like) and fell asleep as soon as she'd swallowed the last little bit of it. I don't mind when she falls asleep in the car on the way home from Thursday's OT appointment but on Tuesdays that means she gets a short cat-nap and then has to wake up for feeding therapy. I laid her on our bed when we got home and she must have really been tired because it was the first time I've ever been able to connect an extension tube, give meds, and disconnect the extension tube without waking her up. When her feeding therapist came, she didn't want to wake Raya up, especially after I told her about our weekend, and I was completely on board with that. We just talked about what's been going on and what to do to get her back to where she was before we ran out of Prilosec and we called it good for the day. Sometimes you just don't mess with a sleeping 2 year old!

Evening wasn't too pretty either. I hooked up her feed and wrestled the backpack onto her. It had an ice pack in it that I thought she'd like having against her back but she didn't care. A couple minutes later I turned around and saw her like this:

She also grabbed her G tube and almost ripped it out of her stomach on purpose, which she's never done before. She usually leaves it alone.

Then it was dinner time so I got out a jar of pears & blueberries since I know she likes it. It was still a really big struggle to get her to eat any though. It's hard to feed a kid that's doing this:
She flat out refused to take bites even though I had let her choose her motivator food (this time it was ice cubes & water) so we had to come down the hierarchy and instead of having a bite, I let her kiss the spoonful of food. After she kissed it 3 times, I gave her a bite of ice. Then she decided she wanted some of my chicken. (It was shredded chicken cooked in a crockpot with half a bottle of Tangy Bacon Catalina salad dressing. SOOO yummy!) I told her she could have a piece of chicken if she licked the spoon of baby food, so she did. To my surprise, she did actually chew & swallow the tiny piece of chicken. It took her several minutes to swallow the chicken but she did it. After a few more licks, I got her to take a bite of food and by the time she was done, she had eaten about 2 ounces of baby food and a miniscule amount of shredded chicken. Sometimes the exhaustion of the process makes it hard to appreciate what we've accomplished but I was happy to see her take tiny bites of chicken.

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 …