When Peter was a baby we endured the feeding pump on continuous feeds both throughout the day and all night long. We changed sheets at 2:00 in the morning whenever the bags leaked formula all over his bed. We woke up to alarms going off due to kinked tubing. And, we mourned the fact that we never got to give our baby a bottle. If you think about it, feeding is a tremendous bonding time between parent and child. It requires you to take a time out, sit down, and enjoy each other's company. That special time is not supposed to include technical hardware and syringes!
As Peter got older, I began to worry about how he would eat at school. The summer before kindergarten, I totally gave up on therapy and went to my own approach. I was sick of playing with food and clapping over the fact that he finally touched a spoonful of applesauce to his lips. I also hope to never again finger paint with pudding!!! I did make some progress after about a week of dragging Peter to the table kicking and screaming and making him take a few bites of whatever pureed recipe I mixed up. Honestly though, we were all miserable.
When Peter went to school all day for the first time, he drank a high-calorie Carnation Instant Breakfast shake for lunch (made with whole milk and cream). Fast forward 3-4 years and his diet is virtually the same. He drinks 3-4 of those shakes every day and has a few other special dishes. He will take bites of other foods but usually not enough for what I would count as daily calories. We also tube feed him a can of Pediasure at bedtime. Yes, I've heard of "food jags," but they obviously don't apply to Peter. I keep asking him if he is tired of drinking the same thing every day. Maybe try a new flavor? A different texture? Anything??????? The answer is always, "No thank you."
It's obvious that Peter takes no pleasure in eating. I sometimes wonder if his sense of taste and smell maybe never developed properly. I know he has those senses based on his reactions, but I just don't see how they can be very refined. I continue to be surprised at how little help the medical community is when it comes to an eating disorder of this nature. None of his 8-10 specialists really seem to care much about how he eats so long as he gains weight and shows up respectably on the growth chart. Whenever I bring up the issue, I receive a prescription for occupational therapy. I'm aware of a few facilities that specialize in treatment for transitioning from a feeding tube, but they usually require intense daily therapy and a great deal of time away from home. A commitment I'm not willing to make right now.
Here is what I believe. I believe that if Peter ever decides that he wants to eat like a typical kid, then he will. If he needs help at that time and shows me that he will work at it, I promise to be right there beside him finger painting with pudding on a paper plate!
P.S. I have to quickly share another ear story. They just never seem to end! Peter lead some new students in his karate class this week and, as expected, they were all very curious about his missing ear. One of the kids finally asked, "Did you fall out of your crib when you were a baby?" Peter, who couldn't stop laughing, simply said, "No. I was born this way."