Skip to main content

Another farewell

Life has been busy the last couple of weeks and I've missed some things so here they are. :)
We had our last visit with our long-time feeding therapist Miss Wendy last week. It was another bittersweet farewell. It makes me sad when we have to say goodbye to people that have been taking care of Raya since we started all this craziness. Raya has been seeing Miss Wendy since June of 2010 when Raya was almost 7 months old. She was with us back when Raya would gag and vomit just from sitting in the high chair or seeing a spoon come towards her face.
I often wondered why we even bothered with feeding therapy for a long time. Raya just plain didn't want to eat. She didn't care if she had anything to do with food, water, formula, or any type of eating utensil, mouth cleaning utensil, or drinking vessel. A lot of our visits consisted mostly of Wendy and I talking about things I could try with Raya and me updating her on Raya's latest vomiting adventures. She always let me unload my worries and frustrations on her and gave me suggestions of what to do, and sometimes just threw her hands up in frustration right along with me. Raya and Kaida love Miss Wendy!
For the past few months we've been seeing 2 feeding therapists. Neither of them had weekly availability so they alternated weeks so that Raya could still get weekly therapy. Last week I got a phone call that our second therapist just had a weekly opening, so it was time to say a bittersweet farewell to Miss Wendy. We had our last visit with her Thursday. Raya decided to send her off the same way she came by having no interest in food that day, so instead of food she just played with the cute magnetic dolls that Wendy brought her. :)
We will miss her but we agree that having the same therapist coming every week will be better for Raya and we appreciate everything Wendy has done for us!

I made an exciting discovery last week. Raya's hair is sort of long enough for pigtails!
There's just something irresistable about a toddler with little wispy pigtails. :) It's taken us WAY too long to get to that point but I'm glad we're finally there. Now if she would just leave them in!
Even her sour cream face is cuter with pigtails. :)

I also made a not-so-exciting discovery this week. More blood coming out of Raya's stoma, puffy scar tissue around the stoma, more goopy discharge, a little bit of redness around the tube off & on, and she tells me sometimes that it hurts when I'm touching the tube. This saga is still unfolding so I'll save it for another day. We're definitely going to be switching to an AMT Mini One button as soon as it can be ordered though, and possibly going to a different size that's a little bit bigger just in case the current tube is too short & causing some of the problems.


  1. Such adorable piggy tales! My GI told me that it is "normal" for my stoma to be goopy. However, after work with a wound specialist, I now have a stoma that doesn't hurt all the time! I hope Raya's stoma feels better soon!

    Hope y'all are having a good week!

    Katie :)


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 …