Feeding Evaluation Recap

Owen had his feeding evaluation last week at Gillette Children’s. Essentially the evaluation was a meeting with an occupational therapist, a speech therapist, a dietitian and Owen and I. We reviewed his medical and eating history and gave Owen opportunities to try eating a few different foods. Since he isn’t currently eating nearly as well as he has in the past, I also showed video of when he was self feeding more regularly.

The general consensus is Owen CAN eat. He is using his tongue and mouth appropriately. They also noted Owen does not have oral aversion but he does want control over what goes in his mouth. In other words, Owen will but just about anything, including a toothbrush, in his mouth he just won’t let anyone else touch his mouth.

So, why doesn’t Owen eat? He doesn’t WANT to. He does not associate food with being full and it’s no longer instinctive for him. This is a very common issue with children with who have had complicated medical starts. Actually, many feel Owen’s doing remarkably well in that he is not orally averse. Oral aversion is when a person will not allow anything, including their own hands or self placed items, in their mouth. Owen actually puts EVERYTHING in his mouth, but that doesn’t mean he’s interested in swallowing it.

Owen’s Plan::
– Owen will work with an Occupational Therapist on a weekly basis who will help teach us ways to get Owen more comfortable with food in his mouth and to help him swallow again. The DESIRE to eat is going to have to come from Owen, so the sessions will be focused on having fun with food.
– Since, Owen doesn’t seem to have muscle control issues, the Speech Therapist will not work with Owen on his eating, unless a new issue arises. However, the woman who saw Owen did note that he is quite delayed in his language skills so is requesting that he have an evaluation for speech therapy to help him find his words.
– The Dietitian will not see Owen on a regular basis. Based on his growth, she feels his current diet is working for him. However, as he does start to eat food and can start transitioning off formula, she will be a resource to help us make sure Owen gets the nutrition he needs.
– At home, we will continue to give Owen several eating opportunities each day. We are encouraged to use horrible eating behavior when we eat with Owen – they told us to eat with our mouth open so Owen can see the food and chewing and to show him our empty mouth when it’s gone. hmmm…I have a feeling the three year old is going to think this is hilarious! Speaking of Kellen, they also suggested that Owen and Kellen interact during eating as much as possible. As we all know, younger siblings tend to imitate their older siblings in learning, so they think Kellen may be Owen’s best teacher.

The most important thing for everyone, and mostly us, to understand is learning to eat, once instincts are lost, is often a slow process. Even once Owen does start eating again, it will take a while for him to eat enough to be adequate for his total nutrition. I believe that, one day, Owen will not need his g-tube, but my mindset is years, not weeks or months. If he goes faster, Great. If not, we’re thankful to have the g-tube as a support while he learns to do it on his own.

© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

9 thoughts on “Feeding Evaluation Recap

  1. It is such a slow process! And sounds like you have a great team working on it. We have almost no one in our state with feeding therapy experience… so I am kinda sorta jealous of what you’ve got 🙂 Have you ever considered a hunger-based tube weaning program? Since you have ruled out oral aversion, I bet Owen would be an excellent candidate. And it may speed things along. Let me know if you want more info! Jack has great success at the age of 2 at one. He went from zero oral feeds, to eating everything by mouth! We now work on texture and drinking. I know he will get there, but as with everything else, in his own time.

    • Jessi, Thanks for the info. I’d love to learn more and will send you an email, but a question for the broader population, in case they are wondering the same thing; Was Jack able to express hunger before starting this program? I really don’t think Owen knows when he’s hungry yet. If he misses a feeding, or even when he’s been NPO while in the hospital, he doesn’t seem to notice.

    • I would love the info on a hunger based tube weaning also! William does not show signs of hunger either. Tatum, please pass the info on. Thank you.

  2. That sounds positive.gemma’s 3 year old cousin and other children at nursery are a fab influence. She eats well for my sister and at nursery.
    At least they can’t see anything and its just time and patience.easier said than done with the patience though….. He will do it in.his own time x

    • I just looked at your pics of Gemma. She’s adorable. I’m happy to hear that it’s helping her to eat with other kids. I think I might pull Owen out of his high chair and put him in a chair at the table so he and kellen can interact better.

      • Gemma is on a booster seat now at home so sits in close to table like everyone else.
        Learning hunger was a huge thing after continuous feeds.for a long time she would only drink a small amount at a time as obviously didn’t know needed to take enough to keep going til next bottle.
        It was then another story learning food fills her up too.to be honest she still asks for milk in first instance if hungry.

  3. Pingback: Eating Update | Ain't No Roller Coaster

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