Skip to main content

Pictures from the week

I'm a little behind on things so I'll just catch up with some pictures. :)

Last Friday (8-22) after school, I decided to make a trip to Ikea with the two little girls. I've been doing some rearranging and organizing around the house and I needed some square bins to go in a shelving unit, so I loaded them up and we headed out. Since I actually planned on buying stuff, I knew I would need space in the cart for stuff and wouldn't be able to put a car seat in it, and I also knew that I wouldn't be able to push a stroller and get the things we needed, so I put Piper in the wrap and crossed my fingers that Raya would have the energy to walk the whole time.

I love Ikea. It's one of my favorite stores to just walk around in and look at everything. Raya seemed to enjoy it too. She didn't want to ride in the cart for most of the time we were there. She just wanted to walk around and touch EVERYTHING. It took us forEVER to walk through the store because every time I turned around, she had disappeared and was off touching something. I turned around at one point after realizing she wasn't next to me anymore, and found her snuggling with a rug that was on display. She said she liked it because it was soft.
This was actually the second rug she snuggled with. It's a far cry from the 1 year old who cried when soft things touched her hands. It was an exhausting Ikea trip. Between carrying Piper the whole time and keeping Raya out of things, and then convincing her to ride in the cart when she got too tired to walk, I was worn out by the time we left. We got what we needed though.

Saturday started off all nice & peachy until I tried to give Raya her meds through the J port of her GJ. It was clogged. Thankfully, it was not clogged in the same concrete-like manner that her G port had been clogged a couple weeks earlier, and I was able to get it functional again. Not completely cleared, but functional. I love how there are so many differing opinions about how to unclog a feeding tube. Do this, don't do this, blah blah blah. You ask one person and they'll tell you to use Coke and then you ask another person (or the warning in the manufacturer's literature that comes with the tube) and they say absolutely NOT to use Coke. Well guess what. Sometimes you just gotta do what you gotta do to stay out of the hospital. Having a jejunal feeding tube, whether GJ or NJ, means that if you have a problem with it on an evening or weekend, you have no choice but to get admitted because interventional radiology works normal business hours and that's it. They don't come in during their off time for feeding tube kids. When you know that hospitalization with a tube change is the alternative, using Coke doesn't seem like such a horrible thing. Anyway, I went out and bought a bottle of Coke to see if I could get the sluggish J port running better. Since there wasn't a bottle that said "Share a Coke with your kid's clogged feeding tube," I got this one:

To make a long story short, a week later, we're still limping along with a partially clogged tube and using seltzer water to flush it instead of regular water. Seltzer water has the bubbles without the sugar (which can make clogged tubes worse) or the acid (which can damage the material the tube is made out of) or the caffeine, and seems to be helping. The longer we can avoid putting her under anesthesia again, the better.

Monday, we had an appointment with the developmental pediatrician. I normally avoid scheduling appointments in conflict with Raya's school schedule, but this is one of those doctors that you just take whatever appointment they give you because if you don't, you won't get in for another 6 months. When I called them 2 weeks earlier, they had an opening for us and so I took it, even though it meant skipping school. It takes us an hour to get there, so we grabbed some of my old CDs from the cabinet we had been cleaning out a few days earlier and listened to some good ol' retro music from my freshman year of high school. Raya LOVED it. I am amazed by how quickly she learns song lyrics. I suppose if we ever want her to learn something and she's having a hard time with it, we could just make up a song and she'd learn it in no time.

We got there a few minutes early and Raya didn't waste any time finding toys to play with.
She has been really sensitive to sunlight lately and has been wearing her sunglasses a lot. It's rather adorable.

She has had really bad doctor/medical appointment anxiety lately. After her experience the week before with vomiting at OT just because she knew she was going to get blood drawn afterward, I dreaded having to tell her we were going to another appointment. I explained that this was a doctor she had seen before, and that she is a really fun doctor that wouldn't do anything that hurt her. I reassured her several times on the drive there that it would be a fun appointment and she'd get to play with toys and just talk with the doctor. I'm so thankful that she is getting to a point of being able to understand that dialogue and that for the most part, she believes me.

And thankfully, the doctor didn't make a liar out of me. :) Raya loves one-on-one attention from adults, and that's what she got. Because of the concerns we've had the past couple months about her attention span, constant motion, and ability to focus, she did some testing with Raya to determine whether or not she has ADHD. For part of that, she asked Raya to draw a picture of a girl, and then asked her a bunch of questions about her drawing.

After a nice visit and a lot of discussion, she concluded that Raya's problems with attention and being fidgety are more likely a combination of anxiety, lack of good quality sleep on a consistent basis, and GI discomfort and that she doesn't have ADHD. This is a good thing, and eliminating that as a possibility helps to narrow our focus moving forward.

When we were leaving, Raya told me that she loved that doctor and asked me if we could go back to see her again. Unfortunately for Raya, we probably won't need to go back to see her. Go figure. I got the report from our appointment in the mail and there was one line that made me laugh out loud. It said, "Raya is a slightly small-appearing girl who is quite chatty." Yes, yes she is. :)


I took this picture Monday evening when the kids were cleaning up after dinner. Sometimes I look at Raya and little moments like this just strike me. Even with her feeding pump and Farrell bag connected to her, and the tubes dangling and in the way, she still managed to sweep up the crumbs around the table. She is so used to the tubes being there that it didn't bother her that they were in her way, she just worked around them. I know it's hard for her sometimes and that she gets frustrated by having to be "plugged in" as much as she is, but she makes the best of it and rarely complains. I love that about her.

Tuesday wasn't a great day for Raya. We were still having trouble with her partially clogged J port and the extra flushing I was having to do made her feel yucky. Her OT was out of town so we just had feeding therapy, and she really wasn't in the mood. She had asked me for a potato and bacon, so I made her some bacon and a small, white potato, but when we sat down in the therapy room, she wanted nothing to do with her food.
We tried really hard to encourage her to eat. Then we tried really hard to encourage her to have a taste. Then we begged her to just kiss the bacon. It got us nowhere, and at one point, she got out of her chair and pouted by the door. (terrible picture but I didn't want her to see me taking it)
She wasn't feeling well. Her stomach was bothering her, and she just flat out didn't feel like eating, and who can argue with that. If you feel nauseated or your stomach hurts, the last thing you want to do is eat. She played games on her therapist's iPad while I ate her potato and bacon, and then we left.

We had to stop at Lowe's on the way home, and it was almost as exhausting as taking her to Ikea but for a different reason. As much as she liked Ikea, that's how much she didn't like Lowe's. She wasn't interested in lumber or plumbing supplies, although she did strike up a nice conversation with a gentleman in the garbage disposal aisle. And pretty much everybody else we passed. When we got to the checkstand, I had to laugh a little. Most kids are drawn in by the display of candy at the register. Raya could care less about the candy. She's allergic to most of it anyway. Those clever merchandisers still got her though. I looked over at her as the guy was ringing up our purchases and she was playing with the display of little flashlights, and begging me to buy her one. Flashlights are her new fascination lately so I'm glad her birthday is only a couple months away because now I know what to get her.

She didn't have school Wednesday because it was teacher development day, so we spent the whole day at home. I didn't so much as walk outside the entire day and it was fabulous. Thursday was pretty much the same. She got bored so she made Piper a picture with stickers. We hung it on the wall above Piper's bed and she loves to look at it while she's laying in her bed.

Saturday was Kaida's birthday, so after school on Friday, the little girls and I went to the store to get what we needed to make her cake. When I picked Raya up from school, she was chattering away and then she suddenly got sad and told me that one of the kids in her class was going to Idaho and SHE wanted to go to Idaho too {*cue sad pouty face and crocodile tears*}. She was sweating buckets, she was tired, and her stomach was bothering her, so it was a sad sight to behold. I asked her what would make her feel better and all she could come up with was going to Idaho.

We were walking down the baking aisle and all of a sudden, she yelled, "MOMMY! OVER THERE! BACK UP!" I asked her what she was talking about and she said, "MARSHMALLOWS! *hee hee hee* I love marshmallows!" I backed the cart up and we went across the aisle to look at the marshmallows. They had about 10 different kinds, but all she wanted was the bag of plain miniature marshmallows. We went back across the aisle to look at frosting and sprinkles, and found the PERFECT frosting for Kaida's cake. She had requested purple vanilla flavored frosting, and they actually had some. It had a package of sprinkles in the lid so she asked me if she could have frosting and sprinkles too. The frosting didn't have anything in it that she couldn't have but the sprinkles were made out of rice flour, so I let her pick out other sprinkles that were okay for her. Marshmallows and sprinkles made her happy.

We went home and I made her a special lunch of marshmallows, non-dairy whipped topping with sprinkles, and potato chips. She was really excited but only ate about 2 marshmallows and that was enough for her. She likes the crunch of the sprinkles.

Yesterday, Raya had her first chance to feed Piper. I suppose I could have let myself get all sappy and emotional about it but I really didn't feel like it. It was actually really cute to watch her, and amusing to hear her tell Piper how to eat. "No, Pipes, you have to open your mouth! Don't stick your tongue out, you silly angel bug sweetie pie! Mommy, she swallowed it! Good job, Pipes, my little angel sweetie cutie pie!"

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 …