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My funny girl

Oh, this girl makes me laugh. I am really really loving that she only has school on Monday, Wednesday, and Friday. Initially I was disappointed when I heard they were changing the preschool program and making it 3 days a week instead of 4, but I think I'm really going to like it how it is now, and I think Tuesdays and Thursdays are going to be my favorite days of the week. Those are the days when we don't have anywhere to go unless we want to, and we're home alone together all day long. I was a little nervous about that idea at first because she has always had at least one of the other kids here to entertain her, but she's been doing great so far. She's realizing that when they're not here, she can play with whatever she wants to, sing as loud as she wants without anybody telling her to be quiet, and (when I let her) watch whatever she wants to. Or eat tortilla chips for breakfast in a t-shirt and diaper on the floor by the front door.

This afternoon Raya walked up to me saying something about a project she was doing. When I looked down, she was holding up an extension tube that looked like it had formula in it. It took me a second to figure out what she had done, but she had connected one extension tube to the med port of the one that was connected to her button, and then she had unclamped both of them. And she was so proud of herself too! :)

At that point, she had clamped the second extension tube. She said, "Mommy, should I unclamp it?" Noooooo!! Please don't! :)

Oh, so it turns out I was not off base when I blamed preschool for Raya getting sick. To recap, she woke up with a slightly runny nose on Monday and has been acting kind of off for a few days. She spent most of the afternoon yesterday like this:

Yesterday, she also had a little of this going on:

I thought that maybe she was reacting to either egg or coconut, and that she had caught a cold or was having allergies or something. This morning when I dropped her off at school, I noticed that it looked like she had a little bit of a rash on the back of her neck. She always kind of has some little scratches there because she scratches at the tags on her shirts, so I thought maybe it was just that. Then I got a phone call from the school nurse saying that there was an outbreak of fifths disease in the class she was in all week last week. As soon as she said it everything made sense and I told her that explained a lot. She apologized and I told her not to feel bad because it's not like anybody could have done anything about it. With fifths disease, by the time the rash shows up they're not contagious anymore.

Oddly, I was relieved to find out that it was definitely a virus she picked up at school because that means it probably wasn't a reaction to the food. I started her on medicine for the gastric pain & bleeding and she seems to be feeling better. She's been running around and doing a lot of very loud singing & talking all day today and she ate about a cup of applesauce this afternoon (which will probably come back to haunt us tomorrow), so her appetite seems to be back. I'm sure this is just the first of many preschool germs she'll be picking up this year.


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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. :)
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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 …