Skip to main content

Our week in pictures (and words)

It's been a busy week. Every week is a busy week, right? I realized it must be pretty busy if I haven't updated in almost a week.

Saturday was a very long day for me. Donny had to work so it was me and the kids all day. If it wasn't for the amount of studying I needed to get done that day, it would have been fine but they make it a little tough to study. Some of my tests & quizzes are timed, and I usually lock the door of my office when I take them. I thought I had locked it but no sooner had I clicked the "start" button than the doors flew open and Raya ran in and started hanging on my arm. My grade was significantly lower on this test than I've gotten on all the others.

Aside from that, it was a pretty good day. The kids played nicely together most of the day and the older kids did a good job of entertaining the younger ones. Big brother is so sweet to Raya and even lets her play Skylanders with him on my iPad.

The big girls do their best to include her too. She has a LOT of energy and has very strong opinions about how things should be done (and she's 3), so it's hard to be patient with her sometimes when she messes up what they're playing with but they're good to her.

After I finished my test, I made spaghetti for dinner. I had gotten Raya some corn pasta a couple months ago and so far she hasn't been impressed with it but since she's actually been doing pretty well with eating recently, I thought we'd give it another try. The spaghetti sauce I used didn't have any of her no-no ingredients in it so we all got to eat the same spaghetti sauce. I shared her corn pasta because I didn't know how much she'd eat, so there was extra. I have to say it was good stuff. I've had 2 or 3 different brands of rice pasta before and was not impressed. It got mushy if you overcooked it by a second or two and had a funny taste to it. The texture is not like wheat pasta. The corn pasta smells like corn when you cook it but doesn't have a strong corn flavor to it. The texture is very much like wheat pasta, maybe a tiny bit softer but not mushy. Raya liked it too. She ate a surprising amount of spaghetti (maybe 1/4-1/2 C??) and seemed really happy to be eating what we were eating. She was ready to fall asleep by the end of dinner.

Sunday was a pretty quiet day. We like quiet days. Raya's respite provider tried to get her to eat her leftover spaghetti but she wasn't interested. We had beef & barley soup for dinner and she was all excited about it but then when I put it in her bowl, she chewed up and spit out a piece of carrot and then pointed at the barley and said, "I don't want those thingies in my bowl. Can you get them out?" So I got the "thingies" out of her bowl. She liked the broth but there were little floaties in it and she started to gag once because there was a little piece of something on her tongue. Dinner time is always an adventure. :)

Monday went pretty well too. I made more of the corn spaghetti for Raya and Kaida to share and they ate all of what I had made. Raya's OT is going to be gone this Friday so we saw her on Monday instead. Kaida hadn't been to OT with us in a while so she had fun.
Raya does a lot of activites that involve spinning at OT. It's always interesting to watch her do the activites her OT comes up with for her that involve using one side of her body or the other, and especially the ones that require her to cross the midline of her body. You can really tell where her strengths deficits are. On the sit & spin, she has a much harder time going one direction than she does going the other direction.
After they were done with everything, Raya's OT let the girls get in the ball pit for a couple minutes. She put a plastic cover over it (don't worry, it's not a tight cover and it has air holes) and put a little sound machine on top of it to help them relax. I NEED a ball pit like that at home only I might want a cover that locks. They LOVE the ball pit! (which is crazy considering how utterly terrified Raya was of the ball pit until a few months ago)

That evening after I had finished my homework, we had a handstand contest in the living room. Mommy won. :)
Biggest sister:
Big brother:
Big sister:
I love that she's doing a handstand (or being dangled by her ankles, whatever) with her backpack on. It makes me smile. :)

Tuesday started out great but didn't end that way. Raya's FINALLY over that cold she caught shortly after she started going to preschool. She's not stuffy at all anymore and is feeling good again. Except for reflux. Her reflux has been bad this week. I don't know why, but it is. I can hear her from across the room sometimes. She has this funny little squeaky swallow that she does when she's refluxing. Her voice gets a little scratchy by bedtime, and I think it's because of reflux. Sometimes when I hear what is clearly a reflux swallow, I'll ask her if she got puke in her mouth. Sometimes she says yes and sometimes she says, "No, there's just puke in my throat." She's waking up at 10:30 or 11:00 at night crying and not feeling well. Tuesday evening, she ate quinoa pancakes for dinner. I had made blueberry pancakes for the rest of us so she did well eating her pancakes since it was the same thing we were having. She ate about 1 1/2 of them and they're really thin so it wasn't much volume. About 90 minutes later, I connected her to her last feed for the evening and put her in bed. She woke up crying about 90 minutes after that but went back to sleep, and then at 10:30 or 11 she woke up and we could tell that she really didn't feel good. She was pretty much in meltdown mode. I connected a drain bag and expected to get a little bit of formula and some air but what came out was 125ml of formula and pancake and a lot of air. Normally when she has eaten solid food, I can tell if it's solid food or formula but the pancake was the same color as the formula so it blended in. I could SMELL that it wasn't just formula though. Formula smells the same when it comes out of her stomach as it does going in but this smelled like formula + vomit. I drained her stomach and gave her some Carafate & water and then she and I spent the night on the couch so I could keep her propped up. Not a very restful night's sleep but she felt better yesterday morning.

Last night I didn't let her eat solid food at dinner time. I wanted to see if she'd still wake up and have a full stomach. Instead, she had a huge meltdown when it was time to put her in bed. I had planned on having a nice quiet dinner with Donny and then doing homework but instead I tried to wolf down a few bites of my dinner without dropping any of it on the screaming 3 year old sitting on my lap and then sat on the couch with her until she went to sleep. When she did calm down out of meltdown mode and could communicate with me again, I asked her if her tummy hurt on the inside (that's how I have to word it in order to get a good answer from her) and she said yes, and when I asked her where it hurt, she pointed at her throat and her stomach. When she was crying, she had been laying on the couch flat on her back and refluxed up into her mouth and then started coughing. So yeah, reflux is kicking her butt this week. Well, I guess it's kicking her esophagus. Whatever. I did finally get her to take a nap yesterday afternoon. She threw a huge fit for a while and then pushed the pause button on the pump, laid down and fell asleep. She was out cold when I went to make the pump stop beeping.

Today she got to have a "snow" day at school. They brought in a pile of shaved ice for the preschoolers to play in. It's the closest she'll get to real snow for a long time, I think. Her teacher had sent me an email earlier in the week after I asked what the "snow day snack" would be and said that they'd be doing snow cones but that I should send in crackers or something for Raya just in case it was too cold to eat the snow cones. (it's been in the 20s at night and in the 40s-low 50s during the day, so yeah, not snow cone weather) Instead of that, I sent in bags of marshmallows for the class. Raya was really excited about sharing her "marsh-a-mallows" with her friends. :)

So that's pretty much our week. Mommy is tired this week. Sleepy Mommy has a hard time being patient with the incessant chattering, horse noises, bickering, chasing, and even the giggling but I do realize how lucky & blessed we are to have 4 healthy kids who are able to do all of that. I realized earlier this week that the week I have to take my finals, Raya has a GI appointment, surgery follow-up, sedated MRI, and 2 therapy appointments. Cole also has his Pinewood Derby for cub scouts, and he and Ashtyn both have places to go on Wednesday evening. It makes me tired just thinking about it. I might cancel the surgery follow-up because her stoma is looking better than it has EVER looked and is finally healed from her scar tissue removal in December. That was a huge relief for me because seeing it get so yucky after surgery made me question whether we had done the right thing or not. The week after my finals, I will be attending the ASPEN conference and then we'll be kicking off Feeding Tube Awareness Week, both of which I'm very excited about. :) We just have to make it through the next 3 weeks...


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 …