Skip to main content

Surviving the weekend & bumps in the gov't road

Well, everyone survived Mommy's weekend away. Not that there were any doubts about that since SuperDaddy was on duty. :) When we got home, the kitchen was clean and everyone was happy. As far as I heard, there was only one minor incident of Raya taking apart her feeding tube when she was supposed to be taking a nap but she didn't break anything so no real harm done. Perhaps I should leave more often. :)
Speaking of leaving, we have hit an inevitable bump in the road to getting respite care. I really try not to complain about Raya's state-provided long term care insurance since it really is a huge blessing to us and we feel lucky that she was able to get it, but the fact of the matter is that it's still insurance and there are still road blocks and red tape involved. Evidently, because there were changes made to the allowances for respite care that went into effect on Oct. 1st of this year, everyone is now waiting for approval for their respite care services.
I'm a little unclear as to why we have to wait for approval for something that we've already been approved for. At the last meeting I had with our support coordinator, she told me that changes were coming and she approved us for the maximum allowable hours for the NEW regulations, which I thought she was doing to avoid this exact issue. Apparently that did nothing except let us know what the new regulations would be. I don't know how it would have affected us if we had started using the respite care before October 1st either. Well, whatever the reason, it's looking like we will not be starting with respite care this Sunday like we had thought. Bummer, but oh well. We've waited this long so what's another week or two (or 4), right? :)


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 …