Eating...by mouth and tube

Tub time - showing off his tube. (Bathroom was being renovated:)

Tom is almost 100% g-tube fed and has been for almost a year and a half. We have tried and tried to get him to eat by mouth. After two different evaluations we finally learned that he didn't have the oral skills necessary to eat. His mouth simply didn't know what to do with the food once it was in his mouth. This led to panic and choking and then more oral aversions. It was an ugly cycle until we learned that he needed to build his oral skills to eat. We were relieved to have some answers and a plan!

Back to Basics - Purees
Now we have been trying just the tiniest baby steps. We no longer let him mouth hard food because he has to go back to the beginning with purees. He has to learn all the stuff he was too sick to learn when he was young.

Body Movement effects Mouth Movement
This may sound sort of crazy but mouth movement and body movement are connected. Tom has two, one hour Occupational Therapy appointments a week. One session is through Early Intervention and one session at the Children's Institute of Pittsburgh that is covered by our insurance. They both push Tom out of his comfort zone by having him participate in every day tasks and physical movement.

His therapists noted that Tom prefers to move up and down but not side to side. Your tongue needs to move side to side for you to eat. So they spend a lot of time getting Tom to move his body in new ways. The theory is that as the body learns to move in new ways so will the tongue. Interesting, right? Click here for an good article on oral motor therapy.

Swing Therapy
Tom is crazy about swinging! So to get Tom to eat we have feeding therapy in a swing. If he takes a bite then he gets a couple pushes on the swing. And it is working! Or we put him in a high chair and use a musical toy as a motivator. If he takes a bite then he gets to hit the button and listen to music.

And do you know what happened this week? Tommy took a bite of a cheese puff (the therapists call them meltable crunchies), and he chewed and swallowed it! It was pure magic to see. And he ate the whole cheese puff in several bites, chews and swallows. I could not believe it. It gives me real hope that we are on the right track. I loved seeing him enjoy food and eat without fear.

Success!

Tons more work ahead of us but we are finally seeing some results. I still can't believe he ate something. Of course I'm all teary and he acts like he does it every day!