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Better day

I'm happy/relieved/grateful to report that Raya had a much better day today. Today her crabbiness only reached what would be expected from a child her age, which is nowhere near what she's been like the last several days. I'm nit completely sure why she did better today but it may have had something to do with dropping her feed rate a little more and spacing her out 4-5 hours in between feeds. Today when I checked for residuals (leftover formula in her stomach from the last feed) there was only an ounce or less and what was there was definitely more digested than what I've gotten out of her the last few days. This means that the slower feeds and longer time between feeds is allowing her stomach to empty. She wanted a hug after her evening feed and when I knelt down to hug her, she almost spit up on me. Lucky for me, she swallowed it. I asked her if her tummy hurt and she said it did so I asked her where and she pointed to where her stomach really is. Obviously she's having a big reflux flare and goodness knows what's behind it. I finally talked to the GI nurse today. We've never met her so I explained some of Raya's background and what the recent developments with motility and allergies are. Honestly I'm not sure what else can be done other than what we're already doing, I just wanted her doctor to know what's going on because we're moving in the wrong direction right now. Hopefully she won't need her feeds slowed down any more than we've already done and we can figure out what's causing this flare up of slow motility.


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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…

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

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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 …