Benja’s evolution of eating…so far….

If you’ve been following along with Benja’s medical saga you’ll recall that he is exclusively tube fed and has been diagnosed with an oral aversion.  I’m no an expert on oral aversions and while the doctors tell me he had a pretty significant aversion, I think Ben was much less likely to cooperate with them, so it seemed worse in the doctors offices/hospital than it did at home.   When we got him he greatly resisted having anything put in or near his mouth.  The babies home told us he had been “eating” baby food but unless we held his head and forced food into his mouth, he wasn’t eating.   I had been doing some research on children with oral aversions and decided to take a big step back and start over.

We started with just getting him used to having people mess with his face.  I tried to spend time every day, several times a day playing with his lips.  He didn’t like it and for a long time really disliked anyone messing with his face/mouth at all.   His therapists here say he’s “defensive”.   He still (although much better) initially startles and jerks away when you do anything with his face/mouth for the first time.

Anyway, so we started just messing with his face/mouth as much as possible.  I gradually started sticking my finger in his mouth and for several months I did this a lot!    He went from hating it, to accepting it, to actually liking it.  I would rub his gums which he really seemed to like after he figured out it wasn’t going to hurt.   We gradually started to notice that he had begun willingly putting toys up to his mouth, rubbing them on his lips.  Then he started putting them in his mouth and rubbing them on his teeth.  We started offering him things on our finger like frosting, syrup, jelly, juice, etc.  He was still very hesitant at first and would take it then jerk away quickly.  Soon we noticed that he would lean forward when we offered something tasty on our finger and come back for more.  We would often offer him a spoon but he would refuse to have anything to do with it and would jerk away and purse his lips.

About a month ago I was sitting on the floor feeding Jovia some peaches and Benja crawled up to investigate.  I, like we often did, offered him a bit of peach juice on a spoon.  He leaned forward and put his lips on it!  He immediately jerked away but then turned back and leaned forward for more!   Jovia and I cheered and were so excited!

The next day I mixed up some very thin rice cereal with apple juice and warmed it up.  I offered it to Benja and he refused.   I put a bit on my finger and offered that.  He accepted it so I tried the spoon again.  And he ate it!   And he kept coming back for more!  Benjamin was eating!

Since that time about a month ago Benja has been eating baby food regularly once or twice a day. He eats a bit differently, because his jaw is fused shut we scoop the food underneath his top lip and he sucks it in and swallows.   He also still has his enormous cleft palate and a ton of food comes out of his nose, but he is still getting quite a bit of  food down.  We’ve noticed his poo changing now that he’s getting something other than just Pediasure and I bet the next time we go to the doctor they will notice even more weight gain.

We are so proud of our funny little man.  He has come so far.  His pediatrician joked that he’ll be eating pizza in no time!

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2 Comments to “Benja’s evolution of eating…so far….”

  1. That’s great:) have you looked at different sensory tools sold in special needs catalogs? He might like teething toys after he gets used to having things around his face/lips also. Speech therapists work a lot with kids with sensory issues like this also. Best to you:) Becky
    Also, I found this little doo-hickey recently after overhearing two parents say how much their child loves it (baby). You put soft whole foods in the mesh section, they can mouth it and bits of strained food (through the mesh) can go in their mouth). I know you said his jaw is fused, but maybe very soft things, like frozen yogurt that could soften up and be swallowed, or pieces of popsicles made with fruit could work?

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