Round and round.
We've done this all before.
Over and over.
I've said this all before.
You'd think I'd be out of things to say on the subject, worried all my worries away by now. But you'd be wrong.
I feel the worry build, buzzing inside me like an electric current.
KayTar's given up the Pediasure. Today is actually day 6 of the Pediasure strike. And she is largely refusing milk too, though on a good day we can get 8 ounces of milk in, but nothing is certain. And you know, there is the long standing on again off again food strike. What can I say? The girl is nothing if not committed.
On Day 1, I thought, this is odd.
On Day 2, I mentioned it casually to the pediatrician during BubTar's well check, hoping the mere mention of it would change things.
On Day 3, I started tracking her intake again.
On Day 4, I tried to figure out the caloric value of 7 french fries and one bite of lunch meat.
On Day 5, Josh and I discussed it over our anniversary dinner.
On Day 6, I wrote this post.
If you remember, Pediasure is the only thing that stands between her and something a bit more drastic. Pediasure is where she gets the majority of her calories and nutrients. Pediasure is where she gets most of her hydration. Pediasure is also where she gets her Miralax doses, without which her stool backs up in a very, very unpleasant manner.
Thankfully, she is not shunning water, although she isn't drinking it as heartily as she once drank her Pediasure. It might not be calories, but it is fluid. And we can put Miralax in it. Unfortunately, when she used to drink an entire bottle of Pediasure and get all of her Miralax in a timely fashion and exact dosage, now we never know how much she will be willing to drink and we have to put Miralax in everything, just hoping enough gets into her to keep things moving. Things came to a standstill on Day 3, but we seem to be getting things going again.
The delicate balance is just too delicate without Pediasure. With Pediasure, I trained myself not to care. To relax. Her weight was good. She was getting her calories. She was getting her fluids. She was getting her medication. Everything else was just gravy. Now everything counts. I want her to eat. I need her to eat. When she says no, I want to engage, convince her it is a good idea. This helps nothing, I know, so I don't. But my insides are screaming, JUST ONE JAR OF FOOD! PLEASE DRINK THE PEDIASURE! PLEASE! YOU HAVE TO DRINK! EAT IT! But I don't say it. If I turn it into a battle of wills, there is no question who will win. She's winning already.
I asked the pediatrician for updated nutritional requirements, so I can see just how far off the mark she is, I'll get those later this week. Based on estimations, I'd say she's getting about 1/2 of her necessary calories, maybe hitting her minimum resting expenditure on average. It's not great, but it isn't as terrible as it could be, for sure. Even so, I just can't help but think about the possibilities, about what might happen if this becomes a long term issue, about how she is still uninsured.
Josh and I talk about it like it can be fixed. Maybe if we just... How about we try... It is helpful to think things can be fixed, if we just find the right way to approach them, but in the end, after we talk it up one side and down the other, we realize...it isn't fixable. It is up to KayTar. We know this all along, of course. We just pretend not to.
Every night before bed, we give her a bottle of Pediasure, which she promptly sends back to the kitchen, "Not THIS chocolate milk. Not CHOCOLATE MILK. Not this." She calls Pediasure chocolate milk, even though it is vanilla flavored and she hates all other flavors, especially chocolate. We bring her plain milk, and she says, "Not THIS milk. Not MILK. Not this." And we bring her water. This is acceptable. And we are reminded once again that it is up to her, that is always has been up to her, and that is what makes it all so difficult.
Oh, babe. I'm sorry you're at this point again. And I'm willing it to pass by Day 7.
How terribly worrisome for you. I know that no amount of negotiation will help with a stubborn preschooler but I hope she opts to end the strike on her own very soon.
Kyla I'm sorry. A G tube is a decesion that I had to make a long time ago.If you need to talk please email me.
The decision was extremely difficult. For two reasons I think.
1. It separates them socially.
2. It is something that they have been able to do so it is like giving up but she has to have nutrition.
Have you put her on the MDCP list? If she has to have this done you may qualify for emergency acceptance.
Nothing to offer to you Kyla. Nothing at all. My fingers are crossed that KayTar will miraculously crave all the PediaSure in the world and you will stock up so much that there will be a world shortage. Heck I'll throw in a craving for steak and mashed potatoes, ice cream, watermelon...you get the point.
Hang in there...
Oh honey! I am so sorry. I know everytime you fight this battle you hope it will be the last. I am praying, praying, praying. Eat little Kaytar, eat.
That is so hard, Kyla. Can anything else go in her water, like vitamin drops or sugar, or will she refuse it, too? I hope she changes her mind soon, honey.
That sucks. I hope she starts eating again very very soon.
Oh, Kyla- I am sorry you find yourself back here again and am hoping that as you read these comments, some act of God will happen and she will be drinking the pediasure again.... I am thinking of you guys and wishing you good things.
I hope something changes for her soon.
oh little girl, will you just EAT?!
Oh Kyla, I am sorry to hear you are at this point right now with KayTar. I hope she will decide to eat pediasure and not have to go down the other path. (((((HUGS)))))
Oh no...I am so sorry that this is happening. I wish so much that you could sit down and talk to her and have it sink in and then she would comply because she would know how important it is...I hope that something changes for the positive with her and food/Pediasure soon. It's OK to keep eating little girl!!
So sorry you're back here! I wish I had something to offer. I hope it ends as suddenly as it began.
I've got nothing but moral support for you. I hope that's an itty bitty tiny help.
I am so so sorry, Kyla. It sounds to me, based on the snippet of conversation with her that you shared, as if this is a stand on being independent in a way. She doesn't realize the cost, but it sounds like she is just trying to assert some newfound foray into Having Her Way.
I'm sure you've tried all the tricks--new flavor? Putting it in a new bottle? Letting her pick the flavor instead of offering it to her?
oh Kyla. this post broke my heart. not really because of the Pediasure - though i get it and don't mean to minimize on any level how important that is - but because of the powerlessness, because it does matter so much to you and you are doing all you can, everything, and still it is up to KayTar and it has to be so hard, so frustrating and frightening...and i am sorry.
hoping she is able to make friends with the Pediasure again soon and that the balance will resume.
"Josh and I talk about it like it can be fixed. Maybe if we just... How about we try... "
and that right there is the toughest part. Hang in there. You're not at drastic yet, so just hang tight.
I'm sorry Kyla and I really wish you didn't have this to deal with.
And sometimes we have to make very big and ugly decisions on their behalf because they really have no sense sometimes.
But I am hoping really hoping that this strike ends very very soon.
Why do these kids do this to us? Why???
I didn't realize it had been 6 days already. An appetite stimulating suppository probably wouldn't do anything either, eh?
I'm so sorry!
Kyla I am so sorry you have to worry about this. I hope that Kaytar gets back on track and soon.
As someone who fought the more drastic measures for as long as I could I've got my fingers crossed and prayers going up for you. It would make your life easier in some ways but you've fought so hard I hate to see you have to go that route.
oh Kyla. how hard.
Kyla, we are praying for your family.
Please keep us updated on how that precious baby is doing.
I can just hear the frustration in your voice. I wish, oh how I wish, I could help in some way. Sending some good eating vibes your way, friend.
THIS makes my email to you this a.m. TOTALLY suck. Sorry sweetie.
We just put Persistence back on the Pediasure because she was losing weight again. Sigh.
This is rough. I am so sorry.
Could there be an environmental thing that is irritating her system? I know it is really bad right now, so many allergens and the heat.
Lots of prayers, sweetie.
this sucks Kyla! I wish she would just give in and eat for you guys. I know this has got to be WAYYY stressful (((HUGS))) to you my friend.
this might be totally stupid but have you tried putting food colouring in, or better yet, letting her do it and mix it up? Maybe...
Oh, Kyla. I'm sending you many, many thirsty moments that will only be quenched with pediasure. Miralax is our best friend, too. Please keep us updated on this.
I had no idea it had been so long. I can't imagine the stress. I hope that KayTar will give in soon. ((HUGS)) to you, Kyla!
Kyla, I am so sorry. Have you talked to her ped about it this time around?
This may be completely naive (although I had a preemie/terrible eater for whom I did have to resort to "drastic" measures - we had a gtube for about a year), but have you tried Carnation Instant Breakfast mix? You mix it into her milk? Chocolate, Vanilla or Strawberry, although my daughter only ever drank the vanilla. I don't think she knew what plain milk tasted like until she was three years old. And I know exactly the feeling. As long as she was drinking that, I didn't feel like I had to worry has much it has so many vitamins and calories, and she was getting her fluids. Just a thought, and I am so sorry - if it is like what we went through (even for years after the feeding tube was removed), it is just awful.
Anonymous, she's really very picky and won't accept Instant Breakfast. Vanilla Pediasure is it. Or plain milk. So when she stops accepting those, we are out of options, because she is so resistant to change. But it was a good suggestion! Thanks.
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