There are weeks when this KayTar gig isn't easy. Things with her are not dire or incredibly serious. We aren't in the toughest spot possible, not by a long shot. But once in a while, things are just tough.
Tuesday I posted about the [not]eating situation. When I got home from class that night, Josh said, as soon as I came in the door, "Kyla. We have to talk about her eating situation. It is ridiculous." He doesn't even read my blog. Evidently we both just hit the wall that day. It was a combination of things, we typically expect regression after an episode, so we've been hoping that was all it was. We've been expectantly waiting for things to work themselves out. Every day we've subconsciously been thinking, "This is the day she'll eat. This is the day things will get better." and it hasn't, for 24 days. And on day 22, we both just realized we'd been waiting for things to improve and they haven't, at all. In fact, I pulled up our original spreadsheet, from July '06 when we started seeing the new pediatrician and KayTar is in WORSE SHAPE than she was even then. A month ago, she was nearly on table food, and now we're so far back we can't barely make out the starting line in the distance.
And so, we made a tough decision. A decision that seems ridiculous when I put it in writing. We aren't feeding her anymore. It makes me feel a little queasy when I write it, like it is against my internal parenting DNA. KayTar made this decision herself, 24 days ago, we are just finally at the point of accepting it. With all our hard work, all our coercion, all of our effort, she still IS.NOT.EATING. Maybe we get her to eat a jar, through the screaming. Maybe not. But we both think that by pushing her, it are creating a larger problem. It will just be one more negative food association, one more reason not to eat...and does she really need another reason? She already doesn't feel hunger. She is already repulsed by and fearful of food. She already struggles to eat it because of her low tone. Do we really want to heap "Great Big Battle of Wills" on to that already laundry list of deterrents? The answer, ultimately, is no. And so we will stop.
Instead of struggling to convince her to eat, we will up her Pediasure. She will, essentially, be formula fed again. Like a newborn. My three year old newborn. It isn't such a stretch, because she isn't eating enough now to keep up with a typical infant. A single jar of food? Or a couple french fries? Most babies eat more than that on a regular basis. She has the verbal skills now to ask for food if she wants it. But by upping her Pediasure, we will be ensuring adequate nutrition whether she decides to eat or not. Last night at dinner, she ate 2 potato smiles. 55 calories. Something small. She asked for them and ate them. I know some of you might say, "My kid has nights like that!" which is true. The key difference is that for your child, it is likely a poor eating night, but for KayTar it is a successful eating night. She asked for food! She ate it! It isn't enough to assist in her nutrition, but it was a positive food experience, which is important in its own way. We won't be denying her food, but we won't be initiating it, we won't be mentioning it at all. The struggle of food will be out of the equation. If she wants something, she can have it. If she doesn't, she'll still be healthy. It was the only decision to be made. It sounds ridiculous, doesn't it? How can not feeding your child be the best solution? But right now, it is what we have to do. Yesterday, between milk, Pediasure, and two smiles, she hit 979 calories. And that's good.
I've spoken with the pediatrician. We are going to go back to the feeding disorders specialist. We talked about starting her back on an appetite stimulant. It sounded promising. And then last night in bed I realized, we can't start her on an appetite stimulant. It is an oral medication. She was on it a little over a year ago, but at that point, we could still give her oral meds. She's lost that ability over this year. We can't even give her oral ABs when we have to. She gags and vomits it all up, then she stops drinking for a bit, until she decides we are no longer attempting to poison her. We can crush pills and hide them in her baby food...but the trick to that is SHE HAS TO BE EATING. And she's not. And that's what the medication is for. So how do you fix that?
And so some weeks are hard. Not incredibly so. But hard still. And it makes me feel a little crazy. Look at her. Doesn't she look normal? Like any other nearly three year old kid? I get lulled into thinking this life is normal. That she is normal. She LOOKS normal. If a stranger met her, they probably wouldn't notice anything at all other than maybe her little purple hearing aid, maybe that something was a little off with her speech. Maybe if her hair was down, they might not even notice her aid. Maybe her speech quirks wouldn't stand out at all. How can things seem so normal and still be this hard? But then I remember things aren't normal for KayTar, and sometimes things are difficult because of that. It is just so easy to forget when I'm watching her laugh and play, just like any other kid any other place in the world.
And once in a while when I have a week like this, I check the mail and find a surprising and wonderful package from a far away friend, and things suddenly seem easier. The sight of two joyful, bobbing, Chef-hatted heads dancing past me is enough to warm my insides each and every time. It makes me stop and smile and remember how lucky I am, no matter what happens to be going on this week.