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My girl is 17 months old today, so just for fun, here are 17 things about Raya at 17 months. (besides the obvious one, being that she'll be old enough to go to nursery at church in 1 month. Yay! :)
1. She has a lot of nicknames, as do all of the kids. The most common ones are Ray-ray and Pete/Petey.
2. Even though they're not very clear or intelligible, she does have a few words. She can say Raya, Bubba (Cole's nickname), Kaida, Daddy, backpack (her first real word), go, whip (because we pat her on the bum and say "whip, whip, whip"), Mommy (but it sounds like grandma), and no but she doesn't know what that means yet.
3. She LOVES music and loves to dance, which of course is fun to watch. :)
4. Her favorite activity when she's supposed to be sleeping but isn't is to pull everything out of her backpack, tear off little pieces of lining, and stuff them into her G tube extension tube.
5. She also loves to find things she can plug into her G tube extension tube. Mostly syringes and the feeding pump after it's been turned off & unplugged but tonight she got a plastic toddler fork in there too.
6. She's quickly learning that if she really wants to, she get the big kids to do pretty much whatever she wants them to.
7. She says "mmmmm!" a lot which is funny considering that she doesn't like the taste of ANYTHING.
8. She still only has 4 teeth all the way in and 1 more that's still just barely through.
9. She knows the sounds that a dog, cat and cow make, although according to her cows say "Boo!"
10. She resents the fact that she never gets to go upstairs unless her PT is trying to get her to practice coming down the stairs.
11. Her most recent sensory-induced panic was because she was walking down the sidewalk and then started walking across the slope of a driveway so that one foot was higher than the other.
12. She has an uncanny ability to discern crumbs from rocks or other non-food objects, and will only put the non-food items in her mouth.
13. She has recently developed a fascination with taking things from the kitchen or pantry and putting them in the bathtub in the master bathroom. Today it was 3 cheerios and a box of oatmeal.
14. She likes to take my hairbrush and walk around the house "brushing" her hair (what little she has), which equates to whacking herself on the head with the brush. It makes her feel grown-up though.
15. She LOVES cold and does not love hot. Especially water that's really warm.
16. Since starting weekly OT and PT, she has started to lower her defenses and give us a few more moments of snuggle time.
17. She is perfectly content with her little life just the way it is right now. Including the part where she doesn't have any desire to eat. And you know what? So am I. :)
Watching Kaida eat a treat
Sort of snuggling :)
Relaxing on the couch
She won't let us put a blanket on her but she'll cuddle the blanket and her puppy :)


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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…

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.
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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 …