Skip to main content

I've been waiting her whole life for this...

This girl is amazing. I can hardly believe the progress she has made in the last 2 months with eating!! I've been spending a LOT of time in the kitchen and grocery shopping to come up with things she can (and WILL) eat. I cook for her, and then she eats what I cook. {most of it} I can hardly believe how much she's eating lately and what she's eating!

This morning, we had our first appointment with her new GI doctor since our beloved GI that we've been seeing since Raya was a newborn has retired. Changing doctors is NOT my favorite thing, but we don't have a choice this time. Thankfully the new one came highly recommended and I think it will be a good fit. I was a little nervous about what her weight would be since so much has changed with her oral intake since our last appointment, but she actually gained a whole kilo between July and today. That is HUGE! In the past, she has not gained as well on food as she has on formula so it is a huge relief to see her maintain her growth in spite of having about a quarter of her calories be from food now. She also grew almost 2 cm. The doctor was very pleased with her growth and wants to keep everything the same and monitor over the next few weeks until our next appointment, and then at that point, we'll go over her food log with the dietitian and fine tune everything.

I had to pinch myself on the way out. I cannot put into words how happy I am with how well she's doing! While we were driving to school after the appointment, we made plans for dinner tonight. I told her I had an idea for how to make chicken nuggets that she could eat. She's never had chicken nuggets and thought that sounded exciting. I went to a couple different grocery stores yesterday to find some things she's been eating lately and got some quinoa pasta in a different shape than she's had before, so I told her I could make her non-dairy/GF mac and cheese to go with her chicken nuggets. I found recipes I could tweak to accommodate what she's able to have, and I was pretty pleased with how it all turned out! (recipes forthcoming...)

She was so happy! She ate 2 of the chicken nuggets and almost all of the mac and cheese! I asked her if she liked the mac and cheese and she said, "Yeah. It kind of tastes like noodles." So I had to explain that mac and cheese IS noodles with cheese sauce. Sometimes I forget that she doesn't know some of those things. I just love her so much!! After so many years of struggling just to keep her digestive tract functioning, it feels incredible to be actually working on transitioning to oral intake and less tube intake. It is so fulfilling for me as her mom to come up with foods that her body can tolerate and she actually likes!

Tonight after bedtime, she came back downstairs and asked me if she could have 5 minutes of snuggle time. (yay for verbally expressing her feelings and asking for something!) We snuggled and I asked her what her favorite part of her day was. She said dinner.

I've been waiting her whole life for that.


  1. Way to go, Raya!! The first time each of my sons (oldest had feeding issues, but no tube, youngest had a G tube) said they were hungry, I cried :)

  2. Wooohooo!! Way to go Raya, and WAY TO GO MAMA! :)


Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

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…

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…

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 …