For the past week we have not used the feeding tube at all! I still can't believe how far Eden has come with her eating so quickly. I'm so shocked and incredibly grateful for how things have changed in the last five months.
Last September we spent three weeks at Denver Children's Hospital doing the intensive feeding therapy program. We had our meals at the hospital where they worked with Eden on her eating issues. It was an incredibly stressful and intense time. When we came home from Denver after she was finished, I was extremely disappointed and felt so defeated. Not only had she not made any progress while we were there, but I felt like she came home feeling more negative about eating than before we ever started. I had high hopes we would leave there with her eating and using the feeding tube less, but it was just the opposite.
One day in December things just changed... she started eating and hasn't gone back. It's been amazing to see the progress. As she began to eat a little more, I would reduce the formula in her feeding tube a little less. She began to try new foods and eat throughout the day, but her quantity just wasn't high at all. In having never really used the muscles in her mouth much, I could see she would quickly start to get tired of chewing and the meal would be done. I wanted her to start recognizing that hunger feeling though so she would eat more frequently, even if it wasn't much each time. It was hard for a while, and she started to lose weight which had me worried, but one of the best things that worked with her was telling her she could eat, or we would have to do milk in her tube and that was actually motivating to her. She needed the extra calories, but I resisted getting back to too much formula in the tube because she was learning to rely on her body and not that tube.
For a couple months now we have just been using the feeding tube at night for extra calories, but within the last week we have stopped that altogether and she is getting 100% of her nutrition orally! She is also very slowly starting to gain weight. I'm blown away.
It took a long time before I could see that she could understand her body and what it was telling her in regards to hunger and thirst. She didn't really know if she was hungry or not, and didn't know if she was full. But over time I have seen her begin to recognize those feelings and what it means, and she knows now what she needs to do to take care of it. She lets me know when she needs a snack and is eating quantities that are pretty consistent with the kids her age that we spend time with. I still don't think she is really great at regulating the fluid intake though. She doesn't drink very much so that's something we still have to remind her of often, but she has the food thing down! It's amazing.
Despite the major texture aversions she had only a few short months ago, she is pretty good at trying everything at least once. She definitely has a love of anything sweet, especially chocolate. She always wants to have some sort of treat after her lunch and dinner.... I don't know where she gets that from. :)
I'm just so very grateful. It's been amazing to see the progress Eden has made this year in so many different things. I'm grateful for the intensive feeding therapy we went to in Denver. I was so discouraged because it didn't work immediately, but I know that it is exactly what Eden needed to get a good foundation on eating so we could get to where we are today. I also have no doubt that we have had a lot of help from Heavenly Father as I've prayed fervently for Eden in regards to eating. I'm grateful for answers to my prayers. I'm grateful for Eden and all her hard work. She is truly amazing.
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