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Never ask what's next

There are certain questions you just don't ask, like "What's next?" I never ask what's next. It's like saying, "I don't see how this could possibly get worse" which inevitably precedes finding out how it could get worse. I learned a long time ago that praying for patience always leads to opportunities to develop patience, so I don't do that anymore. :) I also never ask what Raya will do next, in part because I don't want to know, and mostly out of fear that she will continue to outdo herself.
She seems to be on a mission to outdo herself this week. Hopefully she won't because I'm already tired. :) We always say that she's lucky she's cute because it's hard to get upset with her when she smiles at me and says, "Hi Mommy!" as I'm plucking her off the kitchen counter. Here she is chewing a piece of gum she found in the cupboard:

Last time I took a shower, I didn't dare leave her running amok in the house while I couldn't do anything about it so I bagged her casted arm and let her join me so she couldn't get into trouble. That resulted in the cast getting wet so today, I decided to chance it and leave her in the living room with Kaida. When I got out of the shower, Raya was emptying the contents of the bathroom linen closet (which ironically contains no linens) and had just finished dumping out a baggie of Q-tips, two of which were sticking out of her ears. She excitedly exclaimed, "See, Mommy! See! Ah-EARS!"

Yesterday she surprised me by taking a nice long nap/rest in her crib for about 2 1/2 hours. It was heavenly. :) Then I heard her screaming my name in a panicky sort of way and when I went to get her, she was rubbing at her nose. It was kind of dark in the room so it looked to me like one nostril had crusted over & was a little bit bloody so I got her out so I could see it better. Upon further examination, I realized that it was not, in fact, crusty or bloody. Nope, she had stuck something up her nose. I don't know where she got it or how she smuggled it into her bed, but she had one of these up her nose:
At least it was something easy to remove. :)

Speaking of removal, I decided that I REALLY didn't want to go back to the clinic that casted her arm when it's time to take it off next week so I called the clinic we like and had the appointment moved to their clinic instead. Whew. 6 more days and we'll be done!

And last but not least, I realized this morning that it was one year ago today that Raya and I flew to Ohio to have motility testing done. That was her last hospitalization and I can't believe we've gone a whole year without her having to be admitted. I'm not naive enough to believe that my child, who is still 90% tube fed, will never have to be admitted again (not cynical, just realistic) but I am SO grateful to have closed the door on that chapter of our lives and moved on to a much less stressful, frustrating, and confusing chapter. (well, not to say that trying to teach a 2 year old to eat isn't frustrating, but I digress) Anyway, SO grateful to be where we are now instead of where we were a year ago, literally and figuratively!


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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 …