It has been 35 days of no tube feedings. Sara eats and drinks very little still: maybe she does not need much food!? she is so little!
She will usually have breakfast, then maybe a snack in the morning (then maybe not), then usually for lunch she just has a little milk, then maybe a snack after her nap (then maybe not), and then a few bites for dinner (then maybe not)... I guess you get the picture: I never know if she is going to eat or not. She always has her straw cup available and snacks in the area where she is playing. She knows where her snacks are and she goes there and munches on them if she feels like it.
Yesterday I was heating up dinner and she saw the noodles that I was preparing and she kept saying "more, more" to tell me that she wanted some. So we actually had dinner 30 minutes earlier because she was ready to eat... But she is not always hungry and she does not follow a schedule... So I never know... We just eat in front of her every meal and if she wants food she says "more" and if she is not interested she says "na na". She does not like to be spoon fed but will self feed with her hands directly from her tray.
Two weeks ago we all had a gastro bug and we all lost weight including Sara. But we did not have to give her any tube feeds because she managed to stay hydrated by drinking water, diluted formula, and soup. But it was a terrible week and I am glad that Grandma Linda was here with us.
Here is a list of foods that Sara has eaten (but of course not consistently, I never know what she is in the mood for): alfredo noodles with chicken, rice, chef boyardee noddles, raviolis, and meat balls, carrots, green beans, sweet peas, bananas, avocado, refried beans, black beans, mash potatoes, mayonaise, potato chips, cereal, muffins, sugar cookies, oreo cookies, tuna, tilapia, french fries, meringues, gerber puffs, whip cream, strawberries, blue berries, ice cream, cheetos, snap pea crisps, oatmeal cookies, granola bar, scramble eggs, apples, shreeded cheese, cheese slices, cheese in a can, pickles, french onion soup from panera, white and dark chocolate.
Every day I let her play with new foods so at least she gets used to the look, texture, smell, etc... and one day on her own maybe she'll decide to touch, then lick, and eventually bite, and swallow a new food.
I do not have evidence yet that her weight has stabilized but I can say for a fact that Sara's behavior towards food has changed since we stopped using the tube. Tube feedings mess up your appetite; who would want to eat if you are getting formula pumped in your stomach every couple of hours!? At this point I believe we should have never started her on tube feeds, I believe the doctors back in December where wrong wanting her to eat more when she was just probably eating enough for her size and needs... But things happen for a reason and I believe God has always been taking care of us all along.
Sara is an autonomous eater. (She controls what, when, how much to eat; and unlike most kids her parents have no say about this). Hopefully some day soon her autonomy towards food will be reflected on the scale with a weight gain! I believe in God, I believe in Miracles.
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