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Professional Patient

Yesterday turned into a busy day for Miss Raya. She started the day off with an OT session that really didn't go too well. As we were walking back to the room, her therapist said, "Why is she walking funny?" She definitely was, and not just because her flip flops were in the wrong feet. She's used to that. :) Her base of support was wider than usual, her equilibrium seemed off, and she was toe walking, which has never been an issue for her. We agreed that it seemed like in her efforts to carry on activity as usual, she was having to work really hard to try and compensate for a sudden decrease in her perception of where her body was in space, which is a sensory processing issue. In addition, she looked very pale. She acted fine but just seemed a little off. Because of the vomiting on Tuesday, we didn't want to push her to the point of vomiting again just in case it wasn't a virus so we decided to have a calm therapy day. That includes massage, deep pressure, the cuddle swing, and some kind of heavy work if she doesn't fall asleep in the swing. Usually there's a complete relaxation that comes over her when she's being worked on but yesterday she kept squirming like she does when she's feeling queasy or overstimulated. It was right at naptime so it's always tricky to figure out how much that factors in but she was definitely having an off day. Then when it was time for the cuddle swing, it was totally obvious that she want feeling right. On Tuesday she tolerated a HUGE amount of activity. She spent 10 minutes in a swing, jumped on the inflatable mattress, crawled through the ball pit, and had massage and deep pressure. Yesterday she was in the cuddle swing for no more than 2 minutes with no swinging and she was DONE. Donny and I decided to take her to the pediatrician just to make sure there wasn't anything going on. Her regular ped was out for the day so we saw another one in her practice and I really liked him. It's always a little scary taking Raya to a new doctor because I never know how well they'll listen to me about her medical history and why we're there. He was really good though. He didn't talk down to me when he was explaining his opinions and I always appreciate that. He checked everything out and said she looked good but her stomach and bowel sounds were quieter than he thought they should be. He sent us to get an abdominal xray to make sure she didn't have an obstruction or any foreign objects. I'm still scratching my head as to when and how this happened but Raya has suddenly turned into the model patient. She kicked that xray's butt! It was the first time I haven't had to hold her still during an xray. They also did one where she was standing on a chair and I held her arms up for that one but she was SO good! It also helped immensely that Donny was with us all day. These appointments are so much harder by myself so I love when he's able to come too. The doctor called back later and said he didn't see anything on the xray. That means her puking on Tuesday was either a virus or not. If it was a virus, then that means Raya's body is so accustomed to the nausea and abdominal discomfort that comes with a stomach bug that it didn't even faze her. I had a little stomach bug 3 weeks ago and I felt HORRIBLE and didn't want to even move but Raya seemed completely normal other than the vomiting. I'm glad she can function so well when she doesn't feel good but I also think it's really sad that it feels normal to her. If it wasn't a virus, then it was just unexplained vomiting that has returned after a year with no explanation. Neither one is great but hopefully that's the end of it. She really is getting good at this professional patient thing. She walked out of the bedroom this afternoon with a thermometer in her armpit and said,"teh-ta-chuuh!" meaning "Look at me! I'm taking my own temperature!" :)


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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

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Feeding Tube Terminology: G tube words

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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 …