A New Year: A New OT

Charlie and food.  Two very yummy things unless you put them together.  Then it's oil and water.  So, today was our evaluation with an OT which was leftover from our early intervention yearly eval in December.

My fear is that once again, I am getting my hopes up that someone will be able to help us with feeding.  But it was easy to get my hopes up while talking to this new person, April.  She was really really nice, she has little ones at home herself, and you could just see the feeding-expertness oozing from her with every sentence she spoke.  She's also anxious/interested in working with our doctors and our private feeding therapist (who we like) that we've been seeing at the hospital for more than a year.

Currently Charlie's nutrition is: overnight gtube feed: 545 cc's (18+ oz) of pediasure peptide. That's half his daily caloric intake.  Breakfast he gets 4 oz. of yogurt, and mostly he's then been throwing that up.  Sometimes he gets a new yogurt, other puree, or gavaged 4 oz. milk into his gtube.  Lunch is 1/4 hotdog, or an 1/8 of a cheese stick self-fed, then a puree (3 1/2 oz), or milk.  He'll eat the occasional cheez-it or two (literally, no more than that) throughout the day as well.   Dinner is another puree, probably with a scoop of duocal calorie powder and milk to drink. He may or may not throw up during another meal.  Today he threw up after a whole puree at dinner, then I gave him another one.  It's important for him to know that throwing up doesn't mean the end of the meal. He still has to eat something else if he throws up.

So today the OT showed up early, which worked out well so that I could give her the 2 1/2 year summary of everything that is eating and Charlie.  It's a  long summary, especially when you have to listen while "standing up" (as Charlie insists) and playing baseball/football/golf/basketball with him.

I mentioned his issues with texture (anything lumpy), speed of his meals, the amount he'll take at one time, spitting out bites, gagging, throwing up, the anxiety with the first bite, and how he holds food in his mouth forever before swallowing. (Is it possible we've made any progress with that list of complaints??)

One of the first things April said once she saw him with a cheez-it was "haven't you heard, he has no jaw stability! He grinds the food instead of biting it!"  (First time I feel some sense of excitement- she sees something new that I didn't know! Surely she can help fix it!)  Her goals are to work on the sensory properties of food, and the sensory exploration of food instead of caloric intake.  So we'll be working on exploring, manipulating foods and looking at foods in a healthy way as opposed to strict caloric intake which really is what we've done in the past.  Obviously we're all very concerned at the constant throwing up and how that affects his behavior toward food.  Also, I'm anxious for another opinion at this point, and really willing to do anything. 

Lately Charlie loves to sit on our lap at dinner and stick his fork into whatever food we have (not getting a bite but covering the fork with the taste of the food) then he licks it and repeats many many times. Obviously this is not the way to get calories in him, but it's a great step. (He won't do his with anything on his own plate, but if it's our food then it's good!)  April was very happy to hear this. 

So we'll be working on jaw strengthening and biting, and exposing him to new tastes.  Just getting him to lick different things would be great.  She thinks taste will be his strength given that he enjoys doing the fork tasting thing.   She noted that he doesn't like "tiny texture" so anything like a cracker with the "shatter effect" when bitten isn't desirable to him.  She wants us to do "meltable solids" like cheese puffs.   He never liked puffs but we can always try again!

We'll also be talking about the shape/color/feel of food, changing the shape of foods (use orange like a ball, cut open an orange, squeeze the juice), and working on understanding names of foods.

The bad thing about all this is that by the time we start seeing April in another 2 weeks, we only have  4 1/2 months before Charlie "ages out" of services.  You lose the Early Intervention program at age 3.  Usually, you then go on and get services from the school system, but feeding doesn't "affect the child's ability to do well in the classroom" so they say, so you can't get feeding assistance in the school system.  How incredibly frustrating.  Hopefully we will easily be able to get ongoing private help then though.