Thursday, January 24, 2008

And on we blindly stumble

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.





43 comments:

Mimi said...

Oh, Kyla. I'm so sorry it's so hard, again. I think you and Josh are making exactly the right decision. I'm so impressed by the way that you are parenting the *kid you have* rather than *a kid*, you know? It's the right thing. I wish you strength.

And the hats are adorable!

Aliki2006 said...

I think it sounds like you've at least got a plan, even if it's Plan #468 and less-than-perfect.

And those hats? Perfect!

Becca said...

They are adorable!

And I'm so sorry that it is so tough right now. Your plan sounds like a good one though.

dawn224 said...

thumbs up on your plan. I think it's a good one.

Kristin said...

Those hats are too too cute! They make me smile too.

And I support your decision 100%. I love that she ate the smiles last night.

Keep up the good work, Mama!

bubandpie said...

It sounds like you're doing the right thing. I spent two weeks over Christmas putting off taking Bub to the doctor for his evident ear infection because I knew I could not get a full dose of antibiotics down his throat. The battle of the food is one you can't win, so stepping down is very wise.

~aj~ said...

You have my full support as well. You and Josh know what is best for KayTar and I'll be praying that this new approach will do some good.

The hats are the cutest!

Anonymous said...

Very cute hats! That was so sweet of your friend.

The battle of food is one I experience with Julia too. Obviously not to the same degree as Kaytar, but the frustration all the same. I think your plan is a good one!

Amy

To Think is to Create said...

I don't think it sounds ridiculous at all...you ARE feeding her, just feeding the pediasure instead of other stuff. I think you can have hope that going a while (probably a long while) with her getting rid of the negative associations with food will have you all in a lot better place sooner than you think.

We have food issues with my oldest son (who has autism) and he has about 5 things in the world he'll eat (I know, you only wish, right?!). They are not remotely healthy, so I worry about his health all the time. I stopped forcing things, because he'd rather go without food.

All the best to you, it will get better!

Oh, The Joys said...

Thank goodness for Jill, eh?

It sounds impossibly hard, but I think you're doing the right thing.

xo,
J

Christine said...

I think your plan is perfect. I am sorry that it has to be, nonetheless.

On the pills, if they don't taste bad, maybe you could crush one up and add it to some milk? Maybe chocolate milk or something flavored for extra taste hiding powers?

Best of luck, and either way, you're doing a really good job.

Christine said...
This comment has been removed by the author.
Summer said...

Katie won't take liquid drops?

That's brutal! If Anika wouldn't take her drops I don't know what I would do.

I think you are wise to pull up stakes in the food battle. It can't be won as a battle...it's so hard not to engage. You get so worried...I mean you are talking about food afterall.

After saying we weren't going to coddle Anika anymore. She was in Daddy's lap being spoon fed whatever she would take. We are lucky that it's enough for us to do to coax her to eat now. Still with turning 4 around the corner we'd like to she her feed herself and eat table food. But calories and nutrition come first so Daddy's lap it is.

Sending hungry vibes your way.

Mama Drama Jenny, the Bloggess said...

I think it's a good plan. I don't know if it'll work but for what it's worth, that's what I'd be trying right now. Crap. I wish there was just some magic thing I could say like "Well, have you tried steamed dumplings?" and you'd try them and she'd eat them and then everything would be perfect. Maybe we should have another playdate? She ate last time she was at our house. Granted, it was just a saltine, but still...

PS. Those hats are awesome!

Family Adventure said...

I say it's worth a go. If she was at almost 1000 calories yesterday, then that is a huge improvement from what she was eating when you wrote your post on Wednesday. I realize it is all coming from a bottle, but that's just the way it has to be for a while, then.

Try it out, and hopefully, once she senses noone is pushing her, she'll be back to being interested in food within a few days. I am crossing my fingers.

Fabulous chef's hats, btw!

Heidi

ewe are here said...

Actually, I think this might be the best way to go at this point. Let her come to you... and I hope, really really hope, that she does, and soon.

And the hats are adorable.

Ben & Bennie said...

I like the idea of the feeding specialist. I also know about the "celebration" of eating two green beans. Unfortunately we're pretty certain Ben will always get most of his nutrition from Pediasure.

BTW, don't ya just love those parenting epiphanies?

amanda said...

I am so sorry you all are going through this.

Katie said...

"How can not feeding your child be the best solution?"

Because sometimes it just is. Hang in there Kyla.

Chaotic Joy said...

Oh Kyla. I am so sorry. I know I have never been where you are, not to this extent, but I have found that the more we push Ben to eat the more he shuts down. In fact, when we were pushing the hardest is when he stopped eating altogether. And when we stopped pressuring him and just let him do what he would, and occasionally, casually, offered him things, he started eating again. Just babyfood at first, but at that point even that was a relief.

I think you are doing the right thing. I think, I hope, the no pressure approach will work with her too. And when she stops being afraid of food, she will try it again. Love to you and your two little cuties, with their cute hats.

flutter said...

((you))

Beck said...

You know I understand - to some extent - right? The Baby is still on Pediasure, two cans a day. I'm glad it's there and yet it still makes me feel right on the edge of despair.

Hetha said...

You guys always know what works with Kaytar and I'm sure this time is no different. I am very envious of people whose children eat. I can honestly say I hear you and I totally get it. We're also back in feeding therapy. Are Kaytar and Eboy comparing notes or something?

PJ said...

Love the hats. You're absolutely right to not fight with her over the food. You may be surprised how quickly she resumes food when there is not battle. It's a possibility.
You are a terrific mom. I can't imagine anyone doing more.

Don Mills Diva said...

She doesn't just look normal - she looks beautiful. I hope your new approach works for all of you...

NotSoSage said...

Argh. Just lost a long comment. Short summary:

It's so hard to read about the tough decisions you make, but even harder to imagine how touch it is to make them. BUT, I think mimi is right, and I have continually felt that some kind of providence stepped in to ensure that you and KayTar had each other.

And the hats are only as cute as their models. My first verification word was very nearly 'fromage', which is just so fitting what with the chef hats and all.

xox

Corinn said...

Yikes--I can't even imagine how hard it must have been to type that, let alone decide on it.

If you're up for a little assvice, will she only drink formula? I was on a liquid diet for a while at age 17, and learned that smoothies are good. You can put just about anything through a blender--being a picky eater (if not by KayTar's standards!), I stick to the recipe I found I liked best--blueberries, soy milk, protein powder, and orange juice. I still have smoothies now and again; quick, easy, and probably healthier than anything else I eat.

If it's PediaSure or nothin', uh, ignore me! Best of luck.

carrie said...

Those hats are the best!

And the kids wearing them aren't bad either.

nomotherearth said...

You're doing a great job, really. It's a hard decision, but it sounds like the right one.

Sage is a good friend indeed.

InTheFastLane said...

What a tough decision. It sounds like you know your daughter the best, though.

The Chef hats made me think that maybe she would like to help you cook or bake? Not as more pressure to eat, but maybe just making food something that is a fun project and giving it a different association.

Just an idea, I don't know if she has an aversion to everything about food or just eating it.

Maddy said...

We have feedings issues of our own but nothing of this magnitude. I can see how you would feel queasy but the pressure must be unimaginable.
Best wishes

Christina said...

Again- this is advice you can ignore if it doesn't make any sense for Kaytar...but do you think there is any way she'd go for food if it were available for her to serve herself? I know with kids who have food-control issues sometimes they recommend a kid level cabinet that they can open at will, filled with (non-perishable) food in baggies, jars and utensils etc that they can serve themselves. Like if you say "here's your food cabinet Kaytar and if you're hungry then I can help you get out what you want to eat" or whatever...Then she's allowed to do whatever she likes with the food, whenever she wants...
Again this may make no sense for her.
I hope so much that you can find a solution.

Redneck Mommy said...

Had no internet yesterday...but I will get back to you, promise!!

Love the hats!

Julie Pippert said...

(hug)

Adorable photo.

Christine said...

kyla.

love.

i had jsut made this crazy promise to myself to not comment for a while on blogs, only quietly read until my head gets back on straight.

but when i read this my heart crumbled for you.

you are doing the right thing. absolutely you are. i wish i could help, but since i can't i will send many good thoughts your way. . .

Chickenbells said...

I can't even imagine how hard it was for you guys to make this decision...but, I think you are right in trying to give her positive food experiences...you are her parents, and you know her the best...I hope that it works and she's able to work up to a better place again.

The hats are so fun! I have so many wonderful memories making things with my mother in the kitchen when I was little...I hope they're put to good use...those two are just adorable!!

motherbumper said...

We can all use a little Sage in our lives. And I know it's not much but I'm here to listen, I really am.

xoxo

jen said...

oh honey. how you do this day after day i do not know, but am so thankful you do. you are such an extraordinary mom under so much pressure.

i love you, sister.

slouching mom said...

oh, hon. yes, i think this is the right move. and yes, i think that you must be going through HELL.

painted maypole said...

oh, how hard.

deb said...

Eating and food are such big things. The formula sounds like a good idea. The main thing is to get the calories into her, doesn't really matter what form it takes. That will eventually get itself sorted out. She's still very young.

I kept my daughter on bottles until she was seven for the same reason, to get the calories and liquids into her.

It will be okay.

crazymumma said...

Did you know that I have had the pleasure of the Sage's company. In the flesh? She is a talented woman. A wonderful person.

Food issues aside (nothing with kids is really ever aside is it?), those chef hats are brilliant.

kittenpie said...

Oh, honey. How totally nerve-wracking.

But oh, the hats! Such cuteness.