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Nothing much to report at the moment. Raya had great sessions at OTand FT yesterday. For the first time since December, her therapist was able to incorporate some of the work she had been doing last summer with Raya to reduce the primitive reflexes that are still intact that shouldn't be. Hopefully things will continue to move in the right direction and she'll keep tolerating therapy sessions as well as she did yesterday.

Since it only took her half an hour to eat her Neocate pudding, she had some extra time during FT. Her therapist got out some speech flash cards and spent some time working on articulation, so that was a nice break from the norm. When we got done at therapy, Raya was still in a great mood so we went to the produce market to get some fruits & veggies. It was a madhouse, as usual, but we got some great deals and she had fun. The we got home and the big kids wanted to eat strawberries and she got upset. It was the first time in a week or two that she's gotten that upset over food so I just hugged her and told her that I was sorry she wouldn't be eating any strawberries and redirected her attention to something else.

She's telling me several times a day that there's puke in her throat. One of the times that she was complaining about it hurting, I offered her mint flavored Mylanta and she actually swallowed it. It must have really hurt! She has a little it of blood seeping out of her stoma again so hopefully the Carafate she's getting for that will somehow help her throat feel better too. I guess if  stomach contents can reflux into her esophagus, so can medicine.

Today I had to finish 2 essays and finish studying for & take a 400 point lab practical for my anatomy      class so I ended up having to miss out on the family get-together this evening so I could get my homework done. As much as I would like to have been there, it was AWESOME to have a quiet house all to myself. While I was slaving away at the computer all day, the kids were having a blast playing with cousins at Grandma&Grandpa's house. They got to color eggs, have an Easter egg hunt, and ride horses. Raya even got to ride and LOVED it. (Unfortunately since i wasn't there, there are probably no pictures unless someone happened to take some.) Raya told me all about her adventures as soon as she walked in the door. Actually, she hasn't stopped chattering since then. It's now after 11:00 and little miss fidget is still WIIIIIIIIIIIIDE awake talking and singing made-up songs about being allergic to various foods, and I'm exhausted just from being in her presence. This is why we shouldn't get off of her normal schedule. It will make for an interesting day tomorrow since she'll be going to church with us for the first time since October or November. GO TO SLEEP, KID!!


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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 …