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Just a few pictures

Words I never thought I'd hear myself say: "Raya, stop trying to drink out of your extension tube!" I've been saying that a lot lately. Or, "Raya, get that tube out of your mouth!" Gross. It amuses me to hear her rapidly expanding medical vocabulary. She's starting to refer to some of her medical supplies by their correct names. It's cute, funny and sad all at the same time to hear her say, "Mommy, where's my extension tube?"

Raya's hair styling product of choice: sour cream!

Who needs grapes when you can just eat the stems? (we're still working on discerning between what's edible & what's not)

Locking the water dispenser on the fridge is futile now that she can climb up to the bathroom sink by herself. She is getting SO independent!

Baby Blues is one of our favorite comics in the Sunday paper. This week, Donny and I couldn't help but laugh when we saw it because the boy fell off his bed and broke his arm and then went right back to bouncing on the bed. Kind of like a little girl I know who broke her arm and then went right back to swinging from the edge of the kitchen table. :)

Raya had occupational therapy today and was feeling a little adventurous with her food choices when we got home. She heard someone say "strawberry" while I was getting dinner ready and decided she wanted one. She's tried them before and didn't like them but this time she surprised me and ate one whole strawberry.

She ate one and asked for another one so I obliged her. She started out strong but quickly reached her limit and spit it all out. Then she said, "I wah tate a shower, Mommy!"

We ended up having to tie the fridge shut today because Raya has decided that she likes the slices of cheese that the kids put on their sandwiches and she will not stay out of the cheese drawer now! She ate most of 2 slices this morning and then demolished a couple more and scattered small pieces of cheese throughout the whole downstairs. Then she quietly pushed a chair across the kitchen and stole a piece of spearmint gum out of my purse. She's been putting non-food items in her mouth a LOT lately too and she won't stay off the kitchen counters. I haven't been getting much of anything done (including showering) because I can't leave the room for more than a couple minutes without her getting into some kind of trouble. I've also been reminded of the reality that right now, she's still sleeping in a crib but that it can't last forever and the thought of Raya not being contained is rather overwhelming. But we'll cross that bridge when we get there. Same with potty training, which gives me anxiety just thinking about it. So I don't. :)

I've been thinking a lot lately about how blessed we have been to have Raya make so much progress. Thinking back on where we were a year ago compared to where we are now is just amazing. So many of our little feeding tube friends we've "met" in the past few months are constantly in & out of the hospital struggling with serious ongoing health challenges. Sometimes I feel guilty that Raya is doing so well when our friends are having such a hard time. Knowing that makes me even more grateful for Raya's health. She may have a tube sticking out of her stomach but she has been able to stay relatively healthy this winter (aside from that 6 week long stuffy nose & sinus infection...) and has miraculously avoided most of the common complications of having a G tube. It's definitely something we don't take for granted. The farther we get from her miserable infancy and the more progress she makes with therapies, the more we are able to see the real Raya come through. She is a little ball of fire and I just love her!


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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 …