Thursday, May 13, 2010

"Don't share food", said with a stern expression, while you are giddy inside

Those with Propionic Acidemia often have anorexia. They have no desire or limited desire to eat, so often depend on feeding tubes. I don't know of any affected individuals who have swallowing issues, they just don't eat.

I had a sweet kind of peace when we stopped feeding therapy when she was about 5 years old. She had eaten as an infant and then as a toddler she ate quite a bit. She got her g-tube at 6 months old, which relieved a lot of stress about her getting the food that she needs, especially when she is sick.

Talli does have a good relationship with food, thanks to all of that therapy. She eats when she wants. She is developing table manners. We rely on how much she eats as a guide to how well she is feeling. She gets in food jags, much like toddlers do and wants to eat the same thing all of the time. A few months ago she wanted to eat plained buttered noodles, every day. Now she has moved on to Wavy Lay's potato chips.

Because of food allergies and germs food sharing is not a good idea. But with things like potato chips that have 2 grams of protein per serving (she only gets 14 grams/day) we need to make sure that we know what she is eating. So as I give the kids a snack I tell them that there is no sharing and they repeat the rule back to me.

This afternoon, I just got a chuckle after M had settled down because Talli had swiped all of his chips and eaten them. What a normal sibling thing to do! Since the bag of chips was empty, Talli agreed to buy M a small bag of chips and she apologized. It is also very ironic because M, who is 2, but looks almost 5 asks every day, "Can I have Talli's______?", after she has finished with a meal.