Skip to main content

Mommy needs a padded room. Make it soundproof.

AAAAHHHH!!! This sweet, darling child:
has been an absolute WRECK today. She had a good OT session this morning. She tried another swing that she's never been on before. It's shaped like an upside down T so she sits on it and has to hug it with her arms & legs. It's a lot of work for her weak core muscles. After she'd had enough of that swing, she got in the baby swing and tolerated a surprising amount of motion. Her therapist did forward & backward, side to side, and spun her in a circle. That is a LOT of very strong sensory input, which is why I don't give her a bolus feed of formula before OT on Thursdays. :)
When she'd had enough swinging, she got to ride the scooterboard. She scooted back and forth across the floor about 10 times picking up one puzzle piece at a time and putting them on the puzzle board on the other side of the room. She tolerated the whole oral motor program today so that was an improvement over Tuesday too, but that's pretty much where the positives ended.
She fell asleep in the car on the way home and when we got home it was time to leave to pick the big kids up from their last day of school, so we switched cars and left again. She was crabby. To celebrate the end of a wonderful school year, we went out to lunch. She was still asleep until we sat down in the restaurant and then she just wanted to sit on my lap, which isn't really normal for her. She doesn't just sit. She was very quiet and still but perked up a little when the waitress brought her a high chair.
Big brother was sweet enough to share his fries with her. She likes fries but never swallows them. Normally we don't just let her cram her mouth full of food but today we were at a restaurant and she was extra cranky so most of the time she looked like this:
After she had chewed and pocketed about 4 or 5 french fries, Donny tried to get her to spit it out into a napkin and she had a fit. The more worked up she got, the more afraid I was that she was either going to puke or choke, so Donny and I traded seats and I got her to spit it out. She had a little sip of water and then started stuffing fries in her mouth again. And since the rest of us wanted to enjoy our lunch, we let her. A couple minutes later the whole thing repeated itself:
I helped her squeeze her cheeks to empty her mouth again. It was gross. Even more gross was that when the waitress came and took our dishes, she also picked up the napkins full of chewed up french fry goo while I wasn't looking. Bless her. I hope she washed her hands.
Oh, and speaking of gross and washing things, if there were any germs on the buckle of Raya's high chair (which I normally clean with sanitizing wipes but didn't have any in my purse today), she ingested them. I looked up at her just in time to see her rub the bitten end of her french fry on the buckle as if she was dipping it in sauce and then shove it in her mouth. Twice.
The rest of the afternoon/evening is a blur of screaming and crying. 4 hours' worth of it. I'm not exaggerating even a little bit. She cried off & on for the last 15 minutes of lunch and then really started crying when we left the restaurant because I wouldn't let her climb out of the high chair by herself. (meanest mom ever!) She cried and screamed all the way home and kept on crying and screaming for the next 4 hours. I'm not exaggerating in the least bit. It was unbelievable.
A couple of times I got her to stop for a few minutes but then she'd find something else to cry about. Finally the blessed hour of bedtime arrived and by then she was tired enough to get in bed without much protest. I love her dearly but walking out of the bedroom and leaving a quiet girl in her crib was the best moment of my evening. That was at 7:00 and she slept soundly until 8:45 when she started coughing and then crying again. I waited to see if she'd stop and after about 5 minutes she went back to sleep. Goodness knows what the rest of the night will be like. On the bright side, she hasn't had diarrhea today (probably because her GI had us stop all dairy products as of yesterday) but obviously she's not feeling good still.


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 …