Skip to main content

What's up with Raya? (Wed 1-20-10)

Just thought I'd post a little info about Raya. After her check-up last week, there was concern about her slow SLOW weight gain & frequent vomiting, so we saw a GI specialist. She was also very concerned about the lack (well, more like absence) of baby fat on her & made some changes to our feeding procedures & her medication dosing & had me bring her back Monday for a weight check. She had a really rough weekend & didn't keep much down at all, so it was no surprise that she hadn't gained anything by Monday. That evening the specialist called me back & asked me to take Raya in to Phoenix Children's Hospital for some tests & so that she could get some fluids since she was a little dehydrated, and so we could get her some quick nutrition. So that's where we're at now, she's had several tests done & so far the results have been good, meaning nothing requiring surgery. Her stomach isn't emptying like it's supposed to, which is why she can spit up her medicine 5 hours after taking it and stain her clothes. :) For the time being, she is on high-calorie formula through a tube in her nose. She's had one feed like that & seemed to tolerate it pretty well, so hopefully she'll start to turn the corner & we can get out of here. We're going through roommates faster than we can change our underwear. So far they've all been sweet but I won't lie, I was NOT sad to see Pablo, the appendectomy-with-headlice boy go home. :)
Anyway, I REALLY appreciate all of the help and offers for help and especially the prayers that have been offered on our behalf. It means a lot to us and we feel very loved. :) I'll update when there's more to update and hopefully it will be from home, not from the computer that I had to stand in line & give a few people the evil eye in order to use. :)

Comments

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 …