When we left you last, Toby was working with a therapist to become more comfortable with different textures. This was very helpful. As she explained, if he won't touch it, he definitely won't put it in his mouth and eat it. We did a lot of fun things generally known as "messy play": driving cars in pudding mud, shaving cream, finger paint, foam soap car washes, and a face plate to decorate with food faces. Lydia, Naomi, and Joella went with Toby sometimes and learned the techniques for playing and introducing new foods. They have been a big part of the progress he has made. And he has made progress. It has been slow; Toby is the tortoise not the hare. But he is winning the race!
A year ago, we had our first visit with the feeding clinic in Grand Rapids. At that point, his oral diet mainly consisted of small amounts of crackers and chips- only things that fit into the dry, snack food category. They recommended him as a candidate for their intensive feeding program and put him on their 18 month waiting list. At our return visit this month, I took the following list of foods he is now eating:
Breads
toast (plain)
bread sticks
french fries
noodles (plain)
with oil or butter
with parmesan cheese
boxed mac and cheese
crackers
muffins- some/sometimes
dry cereal
soft pretzels
Fruits
fruit leather
frozen fruit smoothies
raisins
dried cherries
choc covered raisins
Veggies
none
Meats
chicken nuggets
fish sticks
bacon
dried meat sticks
meat on pizza
cheese shreds
nuts
“normal” food
pizza
Junk Food
candy- most
cookies- some
ice cream with hard shell coating
jello
chips/popcorn
Beverages
milk
juice
milkshakes/smoothies
Boost- sometimes
drinkable yogurt
prefers water
Things he won't eat
veggies
fresh or canned fruit
eggs
unprocessed meat
lunch meat
toppings on bread, etc.
dips/sauces
“normal” quantities
Pause now for happy dance.
Toby has now been discharged from the feeding program. He has been receiving 355 of his recommended 1200 calories by tube feedings. (This is 1 box of formula per day compared to the 3 he was receiving a year ago.) They think we can half that amount and work to get him to take it all orally. So it is possible that we are only a few months away from being able to remove his extra belly button. And we are praising God that we no longer have to worry about the difficult logisitics of the 8 week intensive program.
There are still issues, of course. It will take more time and effort to continue to increase the variety of foods he eats and to normalize his appetite and response to hunger. But we are so close to the land of happy eating that we can already feel the sand between our toes. Praise to the God who heals.
