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My baby is a big girl

Raya is turning into such a big girl. I've realized lately that by the time the other kids were her age, there was already another baby or almost another baby. As soon as you bring home a new baby, the older sibling all of a sudden looks huge. This time around there is neither but Raya suddenly looks and acts like a big kid anyway. She tries to copy everything the big kids do and say. She's bigger than all 3 of the other kids were at her age and it hurts when she plops down on top of you or steps on your feet. I want kidding when I said before that she's closing in on Kaida. They're only about 3 pounds apart now. I laughed when I saw them next to each other a few days ago because I realized that they were both wearing Kaida's 3T shirts and Raya's 24 month pants. She doesn't want help with anything anymore and protests when you try to help her. It adds on a lot of prep time when we're getting ready to go anywhere because she's not capable yet of doing some if the things that she doesn't want me to help her do. She screams in the car a lot lately because I won't let get buckle her own seatbelt despite the fact that she can't do it by herself yet. She also has decided that she needs to give herself meds now. It's resulted in Prilosec spraying in my face more than once because she starts pushing it before I've unclamped the tube. Last week I had gotten her meds ready and she wanted me to put the neurontin in her mouth. (she had just seen me give somebody else zyrtec from a syringe) I figured, what the heck, so I put a little of it in her mouth. She made the biggest yuck face I've ever seen her make and spent the next 10 minutes trying to wipe it out of her mouth with a wet wash cloth. :) She hasn't asked for meds in her mouth since then. :) In other news, she broke her record for the longest amount of time she's ever had a piece of food in her mouth. It was an oat from a multigrain Wheat Thin and she had it hidden in there for 4-5 hours. It appeared on the end of her tongue when I laid her down to change her diaper after her nap. Tonight I was talking to my grandparents on the phone and Raya kept climbing all over me. And jumping on the bed. In hindsight, letting her do that once was a bad idea even if it was as part of her OT protocol. :) She didn't have a nap today so she kept moving all afternoon and evening just to keep from falling asleep. Finally she sat down with me, and the next thing I knew she was passed out on the bed next to me. She's so cute when she's sleeping. :)


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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 …