Skip to main content

Ugh, another one of those downer days

Maybe it's because Donny went out of town for the weekend. Maybe it's because I feel like the process of getting us to Ohio is going in slow motion in spite of our WONDERFUL nurse & doctor. Maybe it's because there's more brown stuff coming out of Raya's stomach even though we've used almost the entire giant bottle of carafate. Maybe it's because I've googled things that have been mentioned about her last lab results and no good can ever come of googling things. Maybe it's just because it's sinking in more and more that some of her issues ARE going to be longer-term than others. Or I suppose it could be that I counted how many times that I've written down in my little Raya logbooks that she vomited since I started writing it down back in January. Give or take a couple, Raya has forcefully vomited 463 times in 8 1/2 months.
463
Can you even imagine? Whatever it is, I've had a harder time keeping my chin up today. Most days I'm so caught up in the day-to-day activities of keeping up with 4 cute but busy kids and a wonderful husband that I don't have time to dwell on the negative possibilities. It doesn't do any good anyway. I'm really good at ignoring the bad "what-ifs" because I really don't think that her bad "what-ifs" are all that bad. I know that in time, someone will find that missing puzzle piece that tells us what causes her body to have such a hard time handling food and that we'll be able to figure out what to do about it. She's doing phenomenally well in most aspects of her development but I guess this week I've become aware of things that I had previously been in sweet oblivion to and that's been hard to swallow.

*Sigh* such is life, I guess. There are good days and there are bad days. There are days when you're feeling upbeat and days when you're not. On the days you feel upbeat, you just enjoy it and on the days you don't, you sit on the couch and watch Everybody Loves Raymond reruns and eat a big fat bowl of ice cream and hope decide that tomorrow will be better. Or at least that's what I do. :)

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 …