Posted By Posting
Feb 20, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Jean
How are you sweetie, been thinking about you today!!!!

A word of encouragement, when Jedd was at his worse the only thing that helped me through each day was this phrase:

"This Too Shall Pass"

I actually used to say it to myself all the time while at home. Really. It made me feel so better. I was glad that time passed. I know, it may sound bad, but I would much rather take care of Jedd as a toddler than nay of those days as an infant. And, you know what, I don't feel the least bit guilty about wanting those days to go by fast.

Now I just need them to slow down a bit...LOL

Hoping to day was a tiny bit better.

Feb 20, 2009
jean9
YOU are the sweetie!
Thanks for thinking of me... Chances are I was either thinking of you or telling someone about you... (ie," One of the great PAGER moms told me about....")

These forums are priceless.

Hope you had good day with Jedd!

Anyhow, today was better I guess... I'm keeping with the pos. reinf. therapy stuff--but do it only after she's taken what she will independently and declaring "all done." The "gamelike" novelty is wearing off a bit I think. It's SO hard to know if she resisting because she's reached her limit in terms of stomach volume/comfort or just out of habitual behavior/to try to control the amount she eats. Last night I pushed too quickly and didn't allow her to burp and she vomited. I didn't want to lose the momentum when she was accepting more in her bottle after finishing it!

Do you always offer solids first? Do you have the goal of 4 oz. (or whatever) and insist Jedd finish it no matter how long it takes? I mean, will you let a feeding last more than 30 minutes? And is that with constant prompting to eat for the reward or do you ever take a break from 'forcing' the food on him? I know you use the TV--have you ever used toys, etc?

Is it important to end on a positive note? It's hard if she's crying "all done-alldone- all done" to turn it around...and it seems if I end the feeding at that moment it reinforces the crying behavior. Maybe I'm reading into it too much. Just trying to get it right... Thanks again!

Feb 20, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Today went well with Jedd. We have been doing pretty good BTW. We actually went out to eat during a feed and he ate without the DVD. I did have to use a syringe to get him to take his milk, but it went well. We rarely do that...LOL

We majorly use the TV for feeds. ALL the time. ALL of the OTs and SLPs and feeding people at 2 clinics we have seen have said to use it. So we do and have for well over the 2 years through all this.

To get the stomach to stretch we did 2oz every two hours. Then gradually stretched to 3oz over 3 hours then 4oz over 4 hours. Then we moved to the 3 meals and 2 snacks then added in the water and took away the overnight feed. Sounds simple, but it took FOREVER!!! LOL

If you let a feed go past 30 mins you can actually BURN more cals than you are getting in. So that was the max that we ever did. So we always tried to stop before then. I never wanted him to burn too many cals because of eating. Kinda defeats the purpose of eating KWIM. He used to be able to gag and then it would cause him to retch and then ALL the solids would come up. BOY could he puke. I mean it takes some hurling POWER to get up solids...YUCK!!! But he could do it. :(

We just distracted distracted distracted, oh did I say we distracted him. He would get soo interested in WHAT was ON the TV he would do the mindless eating thing. He would just go into rote mode.Whatever distracted him from the fact that he was swallowing food we did. Toys as well. His tray used to get full of them. All in the hopes that he would stay happy and continue to eat.

Yes, there were days where he was purely miserable. But we had to do it in order to get him to realize that he needed to eat and that it would be OK. As a matter of fact we are fully expecting several days of shear heck once he gets to the clinic and has to learn a whole new routine/protocol with them.

We tried to end on a positive note each time. We made a big deal out of the fact that he finished the "bottle" cup thing we use and that the jar of food was empty. PRAISE goes a long ways. Now I have gotten into the habit of giving him a kiss on the head and telling him it. It has just become part of our routine...:)~

just a warning, it may get slightly worse before it gets better....sadly.

There were MANY days where I had to feed Jedd his meal 3 times in a row because he decided to puke because he was upset that I was making him eat. I could tell he was doing it on purpose. I could tell because on other days (for like 3 days in a row) he would tolerate those food levels perfectly fine. So when he vomited in the highchair as I finished wiht him, I KNEW it was a behavioral vomit and not an I am too full vomit. Over time, it gets easier to learn the child's cues to fullness.

I would just start slow and work up.

Feb 21, 2009
jean9
So if we know she can handle 4 oz. at time, and we haven't finished it all within 30 minutes, do we stop the feeding anyway?

Does the calorie burning concern only become an issue if they're crying/protesting as opposed to just sitting and pushing spoon away?

Thanks! It seems you're MY therapist! : )

Feb 21, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I would think you'd be OK with that time limit and amount as long as too much crying ect isn't going on. If it gets to be too much, (the crying screaming stuff) then I'd say you need to shorten it though.

Have you tried any type of feeding schedule to see if you can get things a bit more structured....which is hard with three kiddos I'm sure..LOL BTW If Jedd asks for food outside o fmeal times I give him a craker or something for him to have. He won't really "eat" it, more like take tiny "mouse bites" as we like to call them...LOL WE jsut started doing that a bout 3 months ago. Before then he would gag on the pieces in his mouth and he wasn't allowed anything between meals....it would trigger a puke.

Check with your
doctor first!