Eating...How Does it Fit in the Picture??

Jerry had that one night he was running around (see post below) and he has ate pretty well that day. Since then, the last two days, he ate close to nothing. He is still acting OK for the most part. He is happy and seems OK. But he is saying he is tired sometimes. He even told me "my belly is tired." On a funny note...when I last asked him what his belly is saying (is it full, hungry, wants more pasta), he sighed in frustration and said "Mommy! My belly is closed up inside. It does NOT talk to me." Well, OK then. I'll have to find an alternative method for getting you in touch with your hunger.

We know that in the past JJ has had trouble eating because there was no blood flow going to his stomach to digest his food and he would feel really full or sick from eating small amounts. He likely even had chest pains from eating. Then we were on the track that his remaining eating issues are mostly psychological. He had learned that finishing food or eating more than a few bites feels awful and it became a very ingrained habit. But now we are being told that his heart could be causing his ups and downs in eating, appetite, and growth. So frustrating!!!

No one can begin to understand the stress involved in the whole eating and growth issue until you have lived it. There is so much guilt involved when he doesn't eat well. Also the guilt of wondering if we have done him a disservice not giving him a feeding tube. But with that said....I really know that there is no rhyme or reason to his eating and appetite. He can chew and swallow anything but there are just days he has no desire. And I know that my instincts and my research lead me to believe the feeding tube is not right for him. There can be so many complications and he can eat. If it was a heart issue it would make a lot more sense because it doesn't really fit any other classification of eating problems such as texture aversions or behavioral defiance. The only thing that is suffering is his growth. He is not going to be a linebacker.

Hopefully, tomorrow will be a better eating day.