KayTar isn't eating. It doesn't really matter since we have the ability to give her enteral feedings and she gets all of her necessary nutrition that way, but we still do notice and it--ahem--eats at us.
She has never eaten many carbohydrates, but that list is quickly shrinking. She eats no fruits, no pastas, no cereals, no cookies, no breads...well, on rare ocassions she will eat a couple of bites of garlic bread. Up until recently, she would eat chips, soda, icing, french fries, ice cream, croutons (with all of the brown removed)...not exactly HEALTHY, but still food that she was willingly eating. Most of those are out now. Here's the BIG one, she won't drink her Pediasure by mouth anymore. She is frequently complaining that foods are too sweet.
She favors proteins almost exclusively, most of the foods she will eat are greasy meats...bacon, breakfast sausage (that has been cooked and put back in the freezer to cool), chicken nuggets (straight from the freezer), tuna with mayo, pepperoni. She'll also eat powdered parmesan cheese and stage 2 baby food peas and corn and sweet potatoes. That's about it. But in the last week or two, she isn't eating any of that on a regular basis. Today, she ate a snack size bag of chips. Yesterday, she ate a few bites off of croutons at Olive Garden along with a bit of parmesan cheese. The day before that, she ate 1 frozen chicken nugget. The only thing she is taking with consistency is her glass of Miralax water each day.
I'm not sure WHY she isn't eating many of her "safe" foods anymore or why she is complaining about the sweetness of things. I don't know why she won't drink Pediasure anymore. It seems like she's having a bit of a flare up of her GI symptoms right now...her constipation is suddenly causing intermittent problems and her feeding issues have greatly intensified. She's been surprisingly healthy recently, no fevers or URIs (knock on wood), no issues with severe ketosis or hypoglycemia. There doesn't seem to be a cause for this little flare up, but there it is nonetheless.
When we started all this, years ago, at our first GI/feeding disorders specialist visit the doctor told us, "The goal will be to have her eating normally by Kindergarten." At the time, it seemed reasonable...actually, it seemed a little ridiculous. "OF COURSE, she'd be eating normally by Kindergarten, that is years from now!", we thought smugly. Except that Kinder starts in 3 weeks and she's about 98% g-tube fed, and her food list is shrinking, not growing.
Josh and I were discussing this in the car a couple of days ago and he said, "Well, has anyone ever been able to predict the way KayTar would behave?" And she pipes up from the back seat, "Hey! What do you mean? I ALWAYS behave myself!" That sums it up pretty well, I think. Life with KayTar is often fraught with medical issues and unpredictable outcomes, but there are plenty of smiles and laughter along the way.