Skip to main content

Raya's Thanksgiving Feast (and other festivities)

This Thanksgiving beat the heck out of last year when I was stuck at home by myself with one sick 3 year old and a 1 year old with a fairly new GJ tube who was still vomiting a lot of bile, battling c. diff, and on a crazy around-the-clock feeding/med/G tube drainage schedule. It was quiet but pitiful. :) This year was much more eventful.
For starters, Raya enjoyed a lovely Thanksgiving meal that consisted of...drumroll please...
sour cream and wheat thins, just as I had predicted. :) She was offered a lot of other things by various people which she sometimes took little courtesy nibbles of, but when it comes down to it, she doesn't eat what she doesn't want to eat and it's just good that she's over her super duper gag reflex and knows how to spit things out now. :)

After her sour cream & wheat thins, she decided to play on all the fun things in Aunt Debbie's back yard:
I went in the house for a couple minutes and when I looked outside, my sister-in-law was holding Raya, who was laying her head down on her shoulder and crying a little. I went to see what happened & they said Raya had fallen off of the bouncy horse but nobody really saw it happen. She had a scrape on her forehead:
(don't mind the crusty sour cream face) and she said her arm hurt. It didn't look like anything was wrong with it at the time so we didn't really worry too much about it. She was acting extremely subdued compared to her usual supercharged self, but she was also really tired since dinner was during naptime. I sat down with her and then she let one of our cousins hold her and fell asleep. She slept on my lap for quite a while and aside from the fact that I knew she was only doing it because she was tired & had hurt herself, I enjoyed the snuggle.
After she woke up she was still acting funny. She didn't really want to get down and play like she had been before but she wanted to eat more sour cream so I put her in the high chair & gave her some.
I handed her the spoon and she took it with her right hand but she couldn't hold onto it tightly enough to eat her sour cream with it so she used her left one instead. We also noticed that she couldn't supinate (rotate her palm up) and that was when I started to suspect that she had possibly broken it. Since it was Thanksgiving and nothing but emergency rooms were open and she didn't seem to be in much pain, we decided to wait and see how she did with it on Friday.
I got up and went shopping around 7:30 on Friday (because, seriously, NOTHING is worth waiting in line all night for :) and when I got back around noon, her arm was definitely more swollen than it had been when I left. She couldn't grip hardly anything with it and didn't even try to use it. Most of the time, it was just dangling at her side which is not normal for her either.
I knew the pediatrician's office would be closed but I called to see if their after hours clinics were open. They were, but none of them have x-ray machines (SO ready to find a new peds office!!) and the urgent care we like wasn't open until 5 so we waited. I kind of laughed at the fact that instead of waiting in line for a store to open on black Friday, I was waiting in line on a sidewalk outside an urgent care waiting for it to open. :) These are the pictures I took just before we left to go to the urgent care:
We are really lucky that the clinic Raya goes to for a couple of her specialists is also an after-hours urgent care so they already have her very extensive medical history in their system and I don't have to fill out any intake paperwork (which is a HUGE pain with a complex kid) or explain everything from the beginning. We only sat in the waiting room for about 30 seconds before they took us back to a room. Raya marched right in like she owned the place, as usual. :) The doctor came in and looked at it and when he saw that she couldn't rotate palm up, he said that he would just about bet that it was broken. The x-ray tech got us all set up for the x-ray and when she turned Raya's arm for the side view of the radius, she said, "Well I can't tell you anything but I can already see what's going on here!"
While we waited for the doctor to come back in and tell us about the x-rays, Raya kept telling me where her arm hurt:
The doctor came back in and said that she had buckle fractures in both the radius and the ulna just above the wrist. The one in the radius is worse but they're both broken.
So they put a big fat splint on her arm, put a little bitty sling on her (which we now know it's a ridiculous task to keep a sling on a 2 year old who still holds her arms up and out when she walks) and after that we were on our way. The whole thing took just barely over an hour, which COMPLETELY justifies me not taking her to a germy emergency room earlier in the day.
Fortunately, we happen to already have an appointment scheduled for Tuesday with an orthopedic specialist at the CRS clinic (where she sees her CP doctors) so they should be able to look at the x-rays and her arm and decide what needs to be done next with it. This also means we'll be cancelling our weight check for Monday since we can't take the splint off to get an accurate clothing-less weight on her now. I'm slightly relieved about that because I'm a little nervous about how we've been doing calorie-wise since we changed her feeding schedule & added some real food.
Today, we went back to Aunt Debbie's for a baby shower and Raya got the door open and went outside, so while we were out there...
For the record, I tried to take the bracelet off but she insists on wearing it.
Whatever makes you happy, kid. :)
She got back in the saddle, splint/sling/feeding pump and all, and showed that wonder horse who's boss! :)


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 …