Skip to main content


Tomorrow is big brother's birthday, so tonight we went out to dinner to celebrate. He chose Mexican food, so we went to our favorite Mexican restaurant. They always bring out bowls of chips, bean dip, and salsa while you wait for your food. Corn tortilla chips are one of Raya's favorites, so she was excited when they brought everything to the table. I gave her a plate and she said, ”I want fwee chee-YIPS!” while holding up 8 fingers. Then she grabbed herself a bowl of salsa to dip her chee-YIPS in. This is her saying, ”I LIKE chee-YIPS!” For as incoherent and off in la la land as she was yesterday, she was absolutely delightful at the restaurant. She and I have had some fun and funny conversations today. She hasn't been quite as moody today either and got to spend some time outside this afternoon. She seems to be past the worst of her cold. I'm sure she'll get healthy just in time to go back to school and catch something else. This evening when the movie they all watched after dinner was over, she came and found me and said, ”Mommy, I jee-yust want YOU to put me in my bed.” So I picked her up and snuggled her like a baby and we talked mushy talk to each other all the way to her room. I put her in bed and connected her formula & Farrell bag. Then she wanted to tell me about the movie they watched. None of what she said made any sense to me (I guess you had to be there) and her speech was getting softer because she was tired, but I knelt by her bed and pretended I knew what she was talking about. She was so happy, and that made me happy too.


  1. You are a saint. You are so blessed to have each other. I love reading your blog.


Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

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 …