Skip to main content

Thriving


If I had to choose one word to describe Raya at this stage of her life, it would be THRIVING. In nearly every way, she is in the best condition of her entire life right now. Medically, she is more stable than ever. She is tolerating larger bolus feeds than ever over a shorter time period than ever. She is eating a wider variety of food than at any other point in her life in spite of her food allergies, and she's able to eat more food at a time than at any other point in her life. And more willing.

A few weeks ago, she told me one morning that her tummy had been hurting when the school nurse or her aide connect her for her second feed of the day and that she hadn't said anything to the nurse about it because the way her tummy felt confused her. We were confused too. She had a hard time describing it because it wasn't like any pain she's used to feeling, and the pain got better after the feed started, not worse, unlike when she's had trouble tolerating her first feed of the day. After a lot of discussion between myself, the school, and her feeding therapist, we realized what she was feeling wasn't pain, it was HUNGER! She had started taking sandwiches to school for lunch when we started trialing gluten free oats again, and was eating a larger amount of food at lunchtime than she normally does. I'm not exactly sure how that made a difference but for whatever reason, when she was taking those sandwiches and eating more food at lunch, she started feeling a more intense hunger sensation by late afternoon when it was time for the next tube feed. This was a huge milestone for her and we are so excited to see her making more of those connections about the sensations she's feeling. It is so awesome as a parent to see all of the years of hard work we have all done paying off this way. We know there's always a chance that her dysmotility and chronic pain can flare up and set her back, but as she gets older, she's learning to cope and her body seems to recover faster from those flare-ups. It gives us hope that there will be an end to tube feeding for her. She has a long way to go before the tube can come out but she gets closer with every bite she takes and we know that when she's ready, she will do it.

Aside from being in the best physical condition of her life, she's really blossoming academically and socially. After school one day this week, she handed me a paper with some standardized test results on it. After reading it 3 times to make sure I understood it correctly, I realized the paper was telling me that she scored in the 97th percentile for reading, and that she's reading 2 grade levels ahead. I knew she was a good reader but didn't realize she was doing THAT well! She is so smart and cheerful and witty and sweet and thoughtful and energetic and just plain awesome. To see how far she has come in all aspects of her life. She's getting better at articulating her needs and how she's feeling because she understands that people are better able to meet her needs when she uses her words. It is so exciting to see that emerging. She is such a joy to us. She's turning a corner in her life where she is starting to speak for herself, advocate for herself, and take ownership of her story, and we are so proud of her. I was in the health office at the school today and heard the school nurse and Raya's aide talking about a student named Sunshine. After they talked for a minute, the nurse looked at me and said, "Does that work for you?" I must have had a confused look on my face because she said, "We're talking about Raya. We call her Sunshine." And that sums her up perfectly. She is Raya Sunshine.

Comments

  1. I am SO GLAD you posted today. Raya has been on my mind a lot. Since I know you are busy and don't post much I get to thinking about her and wondering how she's doing. This made me so happy!

    ReplyDelete
  2. I am so happy to read this post. I have a 20 month old son who has pretty much followed in Raya's foot steps medically. We are at the point of being exhausted from having to travel 1,000s of miles to Boston Children's hospital for extensive motility testing which has only led to more confusion. Anyway, my rambling was meant to say how thankful I am to come across your blog and I love to see success stories because it gives me hope!

    ReplyDelete
  3. So good to get an update!! Love love love that she is doing well these days. Happy for you all!

    ReplyDelete
  4. Glad to hear good news! My baby girl is 9 months old and reading your blog helps me deal with the frustration of her Gtube and hear condition.

    ReplyDelete

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 …