Feeding Clinic

In January, Toby made his first visit to the feeding clinic in Grand Rapids.  He had an initial evaluation by the team including an occupational therapist, a neurodevelopmental pediatrician and the pediatric psychologist who started and heads the program there.  Their recommendations include::

-twice weekly outpatient feeding therapy to strengthen oral musculature and acceptance of broader range of food.  This has not begun yet.

- an evaluation by an ear, nose, and throat doctor to make sure the enlarged tonsils they noted (which have also been mentioned by pulmonary) are not interfering with his ability to eat.  We are currently waiting for a referral from Toby's pediatrician which will not happen until after his annual check up.  So nothing until next month at least.

-placement on the waiting list for outpatient therapy at the clinic there.  This is an intensive 8 week program.  It requires participation all day for 5 days a week so is a major commitment.  The current waiting list is 15 - 18 months.

- parent directed therapeutic feeding sessions at home 3 times a day with both preferred and non-preferred foods.

- return visits to the feeding clinic's pediatrician every 3 months.

The latest greatest news is that our current insurance is now accepted at the U of M so we should be able to return to receiving most of his care under one umbrella.  We are rejoicing both because of the convenience and because of the superior care Toby has received there.  The saddest news is that his pulmonary doctor has left (for the green grass of Toledo) and his care will be shifting to another team member at the U of M.  We are not sure who yet, but have met most of them during Toby's hospitalizations.  And it looks like he gets to keep his current pulmonary nurse who is a literal treasure and a key part of his medical team. So, hurray and thank you, God.

We are also excited because Toby has made what we consider to be significant progress in the last month or so with trying new foods and textures.  He is now eating soft cookies.  He bit a piece of bread once.  He is eating crunchy  pizza crust.  He now will eat "potato sticks" (in this case, oven baked thin french fries) with gusto and in quantity.  He ate part of a Rice Krispy treat at Grandma's.  These are all foods which are a step away from the exclusively dry and crunchy foods he limited himself to previously and involve new textures and new tastes.   Additionally, he sometimes eats dried fruit.  (He prefers his raisins covered in chocolate, but then again, who doesn't?)  And several times now, he has enjoyed - yes, ENJOYED, simple frozen fruit smoothies through a straw.  Some of these things qualify as real food and could conceivably be part of a healthy, oral diet.   All of them are steps in the right direction.

In the past week, we have reduced the volume of his tube feedings and moved them all to the evening and night hours.  The doctors in Grand Rapids felt that he weighs more than enough for his height and this gives us leeway to be a bit bolder about enlisting hunger to work with us.  We have a new schedule for meals and snacks incorporating suggestions from the feeding clinic as well as from additional research.    Toby's 2 year old nephew has also joined the household and is providing peer influence.  As I mentioned, we are excited about the progress he is making.  We know now not to expect any instant turn arounds but also not to underestimate the power of baby steps.