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My 16 month old vanilla-scented child :)

Miss Raya is 16 months old now. She's getting to be such a big girl, literally and figuratively. :) I don't know how much she weighs now but 3 weeks ago, she was 23 lbs 6 oz (down 8 oz from the week before). Carrying her feels just like carrying her 3 year old sister, and I just pulled a bunch of dresses out of Kaida's closet and put them straight into Raya's. I've never done that before. :)
Here's a few more things about Raya at 16 months:
  • She can say backpack (her first real word, uh-oh and mama/dada don't count), and she mimics a lot of other sounds/words
  • She can say her name
  • She barks at dogs and birds
  • She loves dogs and calls them "wa-wa"
  • She sometimes yells "GO!" when we're in the car. No idea where she learned that.
  • She LOVES when the big kids play with her
  • She has learned that she's big enough to push Kaida around and take toys away from her if she wants to.
  • Sometimes we lovingly refer to her as our little bull in the china shop. Or tornado in a trailer park. Either way, you get the point.
  • She likes to push chairs all the way across the kitchen because she likes the noise it makes. (pushing heavy things is also a sensory-seeking behavior, just FYI)
  • She's also learned that if the pushing around and taking toys away fails, she can make Kaida cry by screaming at her.
  • She still hates/fears food and has no interest in it. Although we did get her to bite and spit out cheetos once.
  • She enjoys having water put into her mouth but doesn't know how to swallow it yet.
  • She can't quite climb up onto the couch by herself yet (knock on wood) but she loves to get on the couch, lay on the pillow, and cover up her lap with a blanket. It's adorable, even if it does only last for 2.3 seconds at a time.
  • Now that she changed to a new formula, she is vanilla-scented. I'm not kidding. Her head smells like vanilla. So does her pee. (but let's not talk about #2. Nothing even remotely vanilla about that.)
  • She likes to brush her own hair and she likes when the big kids brush/comb her hair (what little there is of it).
  • She's learning to pretend to eat. We put her in the high chair at meal time and give her utensils & a cup and she pretends to take bites/drinks and says "mmmmmm".
  • She likes to find things that are at the right height for her to sit on (boxes, toys, stools, etc) and then she'll turn around and back up and sit down. Sometimes she hits her target and sometimes she doesn't. :)
  • She has a fascination with belly buttons. She scares me a little bit because sometimes she goes to poke at her belly button and gets distracted by the big ol' feeding tube and plays with that instead.
  • Since she changed formulas, she hasn't had that horrible, blistering diaper rash. Hopefully it will stay that way.
  • She loves all of her therapies/therapists and I'm SOOO glad.
  • She LOVES music and LOVES to dance but still isn't interested in tv/movies at all unless there's a catchy song to dance to.
  • She still has 4 teeth, and the dentist said they look surprisingly good considering all the vomiting and tooth-grinding she's done in her little lifetime.
  • She makes church a very long 3 hours.
  • Her favorite toy is a syringe with a cap on it. She'll practice putting the cap on & taking it off for 15 minutes and not get bored.
  • She loves to put her fingers in the end of her extension tubes.


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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 …