Friday, November 06, 2009

Micah's Eating

Here's a little info about Micah and his eating... or lack there of...

Micah came to us at 18 months old not even being able to suck from a bottle. Seriously, w e had to cut the hole so large that it just drained out into his mouth when he clamped down a little. He wore more of his bottles than he drank. And what he didn't wear, we later learned, was partially going into his lungs. His first 18 months we are told he had constant pneumonia. At first we thought "sure, right" but after we learned he was aspirating thin liquids, we realized that he likely DID have pneumonia since birth since every four hours he was pouring more fluid down there.

Micah also wasn't strong enough to hold a bottle. He had no energy whatsoever when we met him and we believe he was sedated a good portion of his life because he would cry and writhe then they'd give him 'a little something' and he would just go off to sleep. He often slept through portions of our visits with him. But once we left that orphanage... he just screamed. Constantly. For Days.

Anyway... that's another story :) But that's where we started with Micah about 20 months ago. A bottle that we had to hold and he was aspirating it.

We did eventually get Micah to take baby food though it took quite some time. He got pretty proficient at it and also developed some of a suck on the bottle (we still do have to cut the nipple some as his suck is still very immature and not very strong). When we learned he was aspirating we began thickening his bottles. That was almost a year ago now!

Over the last 6 months or so we've gone from little bits of babyfood trying to sneak them in and not have him spit them out to where he is a very good eater-- as long as it's pureed and not liquidy at all, no chunks or weird textures in it, and nothing that's dry at all.

Micah has some sensory issues in other areas, and the main issue with his eating revolves around sensory difficulties for him. Micah has a STRONG gag reflex and even just touching something slimy will cause him to gag. Looking at a cheerio on his table will make him gag. He throws it. That's the behavioral side of it, which yes, of course is also involved. So the function of the swallow and chew is an issue, the sensory issues with texture, the gag reflex with even touching things-- and you should see that gag reflex when we put something that he'd have to chew a bit in his mouth-- or rather you probably would not want to. And the behavioral side of "I don't like this why are you making me do it??". It all factors in!

We had speech therapy that we were working on feeding with and had made some gains, but unfortunately we don't have access to that through our insurance until January again. He has OT and ST at school but they do NOT work on oral motor or feeding. The OT does work on some sensory stuff though. Micah had a swallow study done a few weeks ago and I received the results soon after. It goes into detail about his dysphagia in swallowing with each different thickness of food and how his tongue moves inside the mouth and then said that we do indeed need to continue thickening his liquids so that he doesn't aspirate. Even in just the few sucks he made during the study with thin liquids he brought some down into his lungs (aspirated). He also had many penetrations where it begins to go toward the lungs with even the next thickness up but since he cleared them we are now directed to do nectar thick liquids. I tend to the side of caution and we generally are still doing honey-thick if we're not watching him eat it (such as at school) to make sure he's fine with it.

The drinking part, though, is another story all together than the eating... I truly believe that it is behavioral that he won't take a sippy cup. It may be a bit of "I don't understand what you want me to do with this" but I think most of it is that he wants and expects the comfort of the bottle. And herein lies the problem with just taking the bottle away and saying "you'll be thirsty, you'll drink"... Since his liquids are thickened, they're not much thinner than his spoon fed meals, and he doesn't actually get thirsty because his drinks and food are the same consistency! We also have to use cups that will allow the thickened drink through them, and with his weak suck it has to be pretty easy for him to get it out or he'll just get (more) frustrated and give up.

And so... he drinks bottles and he eats mostly stage 2 babyfood or food that I make that is about the same consistency. But we are about to get on a list for outpatient OT monthly and ST will start back monthly for consults on feeding in January...

And that is the story of Micah and his awful eating :) One day we'll get to where he's chowing down hamburgers and steak and we're telling him he can't have any more to eat and these days will seem like they were short :) Until then, we'll fight through it one week at a time and not stress over the little things. After all, eating babyfood and not hotdogs is actually healthier in some ways! LOL Veggies or greasy beef parts? Hmm... :D


  1. He's come so far! He'll get there eventually. Micah sounds a lot like Wes when it comes to eating. I didn't think he'd ever get off stage 2 baby food. I think he was about 2 1/2 when he finally moved on, even with the benefit of a typical home experience. We got fabulous help from OT's at a feeding clinic. I hope you have a similar experience.

  2. I was actually wondering how he was doing on his eating! I think you are def. making progress though. He is such a sweet boy.

  3. Wow, what a challenge!! Erik doesn't chew but he will try to eat chunky things, though he often chokes...

    I am horrified that the school system isn't offering SLP for oral motor or swallowing!! YIKES! I was seriously hoping that Erik would get seen for that! Maybe Erik's advanced age will help...?? Glad to get a head's up about it, though, since we're in the same school district...

  4. If you tell anyone, I will of course deny it... but Luke took formula from a bottle till his 3rd birthday! So he hasn't even been off the bottle a year yet! :) He is so stubborn about some things, I decided I didn't want that battle.

    Now Luke has none of the issues or beginnings that Micah had... just saying that comfort is such a HUGE thing to some kids!

    Micah HAS come so far! I did not realize that he was so delayed, guess I always thought it was just Emma and that Micah was a pretty average kid in the beginning. Hhhmmm, wow... you are an amazing mom! [I already suspected that though! :)]

  5. Have you tried the Honey Bear Straw? It can take thicker liquids, might not hurt to try :)

  6. Feeding problems ar esuch a biggie for our kids with DS
    our son Isaac has been tube fed from birth for 4 years but has begun to eat (and NOT drink - so a bit like Micah)
    you may like to read about the Graz clinic in Austria which bases their sucess in feeding issues round a daily play picnic - presenting children with lots of different food to explore however they like with no pressure (very very messy but it works!)
    their website is also has parent advice re textures etc
    best of luck!