Sunday, February 19, 2012

This is hard,

I'm not going to lie!

I know we're supposed to be breaking Jax in like you do a horse. We're supposed to stay the course and ignore everything negative that he does. He's supposed to just start to want food at some point, I know this. But wow, it's hard!

Jax has puked each day, and that puke is NASTY. It's hard to not jump up without a reaction or comfort him, even when you know he's gagging on the texture. Which is a whole other thing... me making his food. I'm making extra each time to make my life easier in the future, but for now, it's a lot of prepping. I'm also realizing that Jax needs food to be of a pudding consistency and anything more results in choking and gagging and of course, puke.

We've had standoffs, sitting in the corner looking at the wall, time outs alone up in bed and straight out yelling moments. The yelling moments have to end, I know that. We need to stay emotionless, but it's SO HARD when you know he's not taking even half of what he's supposed to, or if we're in the feed for 15 minutes and he hasn't even finished an ounce of milk. GAH!

We're learning as we go. Of course Jax ate like a champion when I pulled out a new Spiderman action hero to play with - so Today he refused a lot of his breakfast and I was about to pull my hair out. Jason took over the snack and Jax took an entire meal portion... then he continued to eat well for Jason today. Jason calls himself the "Food-Whisperer". So Jax works better with Jason and acts up for me - GREAT!

Jason left tonight for a 2-day business trip, so Jax and I have to figure this out. I just can't wait for Jax to want to eat like the doctors keep saying he will. My goal remains for him to gain weight and to keep the tube-feeding to once at bedtime when he gets a check up in two weeks. I admit, the no backpack during the day is awesome! Oh, and Jax is learning how to burp, it's quite funny.
I know this will get better, and the child just ate the first meal of his life less than two weeks ago, so in that respect, he's doing great. I know. It's so hard to not get instant gratification with him just asking to eat. I'm so happy we're getting the bulk of this done during these winter months where we are at home so much and can really focus on it.

So the boys are doing the cutest thing lately. They're singing the Spiderman theme song from the 1960's show (thank you Netflix). Jax can say a few of the words, so it's just adorable, whereas Brady can't really say any of the words, so he makes up his own words to the tune - I MUST GET THIS ON VIDEO! These are the moments I want to put in my pocket forever!

*Oh, and I was using Nesquik powder (Strawberry and Chocolate flavors) rather than the standard syrup because it didn't contain HFCS and is so much healthier. Well, I found that Carnation Instant Breakfast now comes in the same 1lb container for easier use and it's SO much healthier with triple the calories. It costs more, but hey, it's still cheaper than buying flavored Pediasure in individual bottles. We're not sure how Jax would do with Pediasure since it's his "formula" that he's puked up so many times. Jax gets 1 can (8oz) of Pediasure 1.5 cal each night through his tube, so he's definitely covered with nutrition with his multi-vitamin and using the Carnation powder. I use whole milk and heavy cream as the milk base - it tastes SO good, how does he not want to slam this every day?! Brady would go crazy if he knew what it tasted like ;)


Christina said...

Yes it is hard we are deep in the feeding trenches with no feeding programs like what Jax went through :( K eats something one night and pukes the next night on the same thing we have no "set food" (minus the pediasure 1.5 cal) that she will regularly eat, last night I took from your turning to face the corner until she calmed down and she calmed down! Seriously losing my mind with feeding we know what she can and can't tolerate from the swallow study but nothing else she stumps us most days! As the pudding texture there is ensure puddings that our dietican gave us that k eats with no trouble so mabye an idea for Jax

Michele said...

Maybe the flavor is too rich for him? He's not used to flavors of any kind and some people just don't like overly rich flavors, even kids... I actually know a lot of kids like that. Maybe try to tone down the flavor?