Marissa 11 month old, 8 months adjusted, birth weight of 1lb 1oz. She has been tube fed since birth. She did suck for the first few months but it was a non-nutritive suck and only took a max of 20 ml per feed. She stopped sucking in June when she was admitted for bronchiolitis and we stopped feeding her because she was so tired trying to breathe. When we started a month later she just didn't know what to do anymore.
That brings us to now. I have been trying twice a day since with no luck until last week, when she actualy took 20 ml consistently for a few days! Now she's refusing to open her mouth for the spoon though so win one, lose one. When she did let me put some purees in her mouth, she didn't know what to do with it and eventualy either swallowed it or choked on it. Very scary! The OT thinks its pointless now to try the bottle because in her opinion liquids are harder to move around than solids.. but my instinct tells me otherwise. She's making incredible progress with the bottle, why stop now!
I've been spending lots of time looking up oral defensiveness, oral hypersensitivity, apraxia and oral motor toys to help her out.
I found a really cool bottle that i wish i had found months ago at
http://www.new-vis.com/cart/detail.php?Item=CMF-03-01
along with great chew toys to stimulate the mouth. I just ordered it so i'll write back when i start using it.
My OT is absolutely useless. She sits and watches a feeding without giving me advice. She seems clueless to what is going on and what to do. I found everything i know through these discussions and research online.
I really wish i had help with Marissa! But since i have to do it myself, i'm going to read on those subjects until my brain bursts and hopefully come up with a good plan. Here is a book i'm ordering:
http://www.dysphagiaplus.com/prints-home-program-oralmotor-skills-p-154.htm l
One of the things i'm ordering too is called the Z-Vibe. It has neat attachments like spoons and there's a great book that gives techniques on how to use it. Again its expensive but i think it'll be worth it. I think its worth the money to get all these things because she's getting older and still not eating.
Good luck and please everyone, keep posting on the subject, its so frustrating to have a little one that doesn't eat, we need all the advice we can get!!
Add to the discussion