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We have an escape artist

The timing with eliminating Raya's night feed couldn't have been better. This week she learned how to climb out of the crib. Ugh.
She's pretty proud of herself. :) When she wakes up in the morning now, she climbs out of bed, runs over & crashes into my side of the bed and says, "Hi Mommy! Ah ou-ba bed!" (translation: I'm out of bed!)

She's been SO lively lately! As she was wrestling to try and shove a stool in front of me in the kitchen so she could "help" me cook dinner tonight, I asked Donny if he remembered Ashtyn being this energetic & lively at Raya's age. He kind of laughed because Ashtyn was nowhere NEAR Raya's level of energy. We agreed that NONE of the other kids were as busy as Raya. Maybe it's because her diet is nutritionally complete and she gets 100% of her caloric needs every day. (thank you, feeding tube. :) Or maybe it's just Raya. :)
It turns out that peer pressure isn't entirely a bad thing. Tonight at dinner, the other 3 kids all wanted sour cream on their beans & cornbread. As soon as she heard me ask who wanted sour cream, she started yelling, "Ah-sa-sa-teem!!" (she yells ALL the time now) So just for kicks, I plopped some on her plate. She smeared it around with her spoon and stuck the spoon in her mouth and then shouted to me that she wanted more. I figured what the heck, if she wants it she can have it. I would guess she ended up eating about 1 tablespoon, which is about 23 calories. Darn reduced fat sour cream! :)


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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. :)
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 …