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Last week of summer break

Our summer break is winding down. Wish I could say the same for summer but that will be hanging around until late October. :) Towards the end of the school year I saw an article online by a tired mom who talked about feeling like she was limping across the school year finish line. Sadly, that's how I feel about summer break. We have a short summer break here but we've been at home all summer and it's to got to play outside. We have the same kind of cabin fever that people in other climates have in the winter. We all love each other dearly but I think we're all ready for school to start. (except I've really enjoyed not having to get out of bed by any particular time in the morning...) We have a busy couple of days ahead of us. We have a meeting with Raya's teacher tomorrow to go over all of her medical needs. The theme of the meeting will lean heavily on emphasizing the importance of not having her do crafts or activities with food and not letting her eat anything I haven't sent in with her. I don't anticipate trouble with her G tube feeds at school because they won't have to touch her pump at all unless it beeps. (infinity pumps never beep at inconvenient times, right??) My biggest classroom concerns are Raya coming in contact with food she's allergic to and how they will handle an accidental g tube pull-out if it ever happens. As long as we see eye to eye on those two things, I think we'll have a good year. On Thursday, we're meeting with the new health aide from the new school, and some other members of the district health office. I'm not sure who all will be attending other than the district health supervisor and their respiratory tech. As a patent, you never know exactly what to expect from meetings like this and all you can do is be ridiculously, overly prepared. I will have handouts for everybody. I also picked up the stack of medical forms that they want filled out & signed by doctors and returned on Monday so we'll see if I can pull that off. There has to be a better way to get all this paperwork done than parents having to chase it down and scramble to get busy specialists to sign it by the first day of school but nobody has thought of one yet. We took what is probably our last swim of summer break today. The kids love swimming and we had the pool to ourselves.

This girl got worn out and had to try hard to stay awake long enough to eat her French fries. It was her first fries since January so she was really excited about them. She was so tired that she fell asleep with her backpack on while the kids watched Pink Panther cartons. (they think it's the funniest show ever. I don't get it.)


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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 …