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Sunday, April 2, 2017

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.

4 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!

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  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!

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

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  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.

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