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One extreme to the other and Happy Tubiversary!

If you're looking for Raya, she's probably in the high chair stuffing Cheerios in her mouth. Or under the kitchen table grazing for whatever the big kids might have dropped. Or on top of the kitchen table looking for abandoned food. We have most definitely gone from one extreme to the other. We are no longer in the stage of gagging & puking just because somebody looked at her with food in their hand or because she picked up a tiny crumb off the floor and put it in her mouth. Now we have moved into the phase of if it even remotely resembles food, she wants to put it in her mouth, even if she's not coordinated enough to actually eat it.
The funny thing is that I'm 99% sure that Raya's eating has NOTHING to do with being hungry. She's gone for as much as 48 hours with nothing but IV fluids and didn't care at all as long as Child Life kept bringing her new toys to play with. I'm pretty sure that the entire reason she eats is because it's a novel thing for her. It's new and interesting and it's another way she can try to be like the big kids, so she does it. I'm not complaining about that by any means, I'm thrilled that she's at least experimenting with food.
So far, the switch back to a G tube from the GJ tube has gone off pretty much without a hitch. Except for one thing. We seem to be having leakage problems again. Back when she got her very first G tube, she leaked profusely pretty much the whole time she had it. (see here) That was not pleasant. :) This is nowhere near the way that was, but I have noticed that she's leaking a little formula from around her G tube. This morning, the gauze that I took off was dry but it had been soaked about halfway across by formula. The kicker was that it also had some little flecks of the mashed pinto beans I gave her last night on it. It's kind of gross, to say the least. I can clean the outside of the stoma, but it's not like I can clean out what's on the inside of the hole around the tube. Hopefully it won't cause a problem for her.
Last but certainly not least, yesterday was Raya's 1 year tubiversary. Her G tube surgery was August 3rd, 2010. We are light years ahead of where we were a year ago and very grateful to have so many unpleasant experiences behind us. Having her G tube put in was definitely one of the best decisions we've made for her, and probably THE best decision we've made for our own sanity. It's funny, the more time that passes, the more negative my feelings towards the NG tube become. :) We held out as long as we could on getting the G tube because we had hoped that the feeding tube would be temporary. I still don't regret having waited as long as we did because I feel like we gave her as much time as we could to see if things would get better. Having said that, I would not wish the NG tube experience on anyone. Heaven forbid, but if we ever were to have another kid who needed a feeding tube, you can bet your booties we would opt for the G tube a lot sooner than 6 1/2 months!
Anyway, I just want to say once again how grateful we are for the technology of feeding tubes that has literally saved Raya's life.

Raya with her brand spankin' new belly piercing
On day 3 or 4 of her 5 day hospital stay

My poor baby all drugged on morphine
And here we are one year later:


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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

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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 …