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Not exciting but still noteworthy

Raya has not really ever slept through the night. If it ever happens, it's a rare thing. When she was younger, she woke up like clockwork every night between 10 and 11 to vomit. When she outgrew the vomiting, she still woke up every night sometime between 10 and midnight. I suppose this is one area where being a night owl pays off for me because I'm not usually asleep by then anyway so she's usually not waking me up when she wakes up because I'm already awake. Staying up a little later than I want to doesn't feel as bad as sleeping for an hour or two and then waking up with a crying kid. (that will be resuming soon enough)

She didn't sleep through the night last night either but she did sleep in her own bed all night long. She went to sleep in her bed at the usual time (as opposed to falling asleep on the couch) and even slept through me giving her meds at about 10:30 or 11. At that point I debated whether to A. go to bed and sleep for 45 minutes until the pump beeped, B. turn off the pump and short her the last ounce or two of formula, or C. stay up for another 45 minutes. I opted to go to bed and then it ended up not being the pump that woke me up, it was Raya. Oddly enough, I thought for sure it had to be 1 or 2 in the morning judging by how I felt (i.e. like I had been sleeping for a long time) but according to the clock, I had been asleep for no more than 30 minutes. :) Raya was standing next to her bed crying as opposed to dragging all of her belongings down the hall to the floor next to my side of the bed like she normally does. Probably because the pump was plugged into the wall and the backpack was hanging on the IV pole, and her tube was all tangled up in her blanket. I thought for sure she'd throw a fit and want to sleep on the floor in our room but I changed her diaper and told her it was time to lay back down and she just got back in bed and went to sleep. I think both of us got a MUCH better night's sleep last night because I felt a lot more rested this morning than I have lately and she was in a great mood this morning and full of energy.

She was full of all kinds of fun things to say all day today. I kept thinking to myself what a shame it was that I was the only one around to hear her talk. Her toys had some pretty awesome conversations with each other today. She helped me make a car seat cover for her baby sister (whom she refuses to refer to as "the baby sister" like everybody else and insists on calling her "my baby GIRRRRRR-LLL"). She probably really missed the big kids today too because since they weren't home, she had to pick up everything in the living room so I could vacuum. It would have been MUCH faster and easier if I had done it myself but where's the lesson in that, right? Eventually she got all the toys out of the way and I vacuumed and then we plopped on the couch for the rest of the afternoon so I could take a nap and she could watch as many episodes of Jake and the Neverland Pirates as she wanted while I slept. Thursdays are my favorite because we don't have to go anywhere or do anything, but sometimes after an entire day of listening to her talk nonstop and just being in the presence of her boundless energy, I am SO worn out and ready for bedtime! Today was a good day though. There were several moments today where I just sat and listened to her playing with toys and making them talk to each other and felt so blessed to have her, that she is doing so well developmentally compared to where she could be, and that she and I are finally getting to spend time alone together that does not involve anything medical.


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Sensory Processing Disorder: How to Make a Weighted Blanket

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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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Feeding Tube Terminology: G tube words

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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 …