Today Levi has a follow up swallow study, which will determine whether or not he can start eating by mouth again. This is a big deal for us!! Last July the swallow study showed that food and liquid pooled at the back of his throat, putting him at risk for aspiration. It was determined that he should have nothing to eat or drink by mouth for 6 months, and of course that is why he now has the feeding tube.
Eating had become very difficult for him at the time. Levi had never had a big appetite, and the food on the ketogenic diet is not very tasty, although we did find some recipes he enjoyed. Also, the diet is very strict, and all meals need to be completely consumed for it to be effective. We found ourselves constantly trying to shove food into him. By the time one meal was finished, it was almost time for the next. The hope is that he wasn't swallowing well because of the continuous stress of being force fed, and now that he's had a break, he will be successful once again.
I've made him two of his favorite ketogenic meals, a bottle of dilute pedialyte, and a bottle of ketocal formula. He will swallow barium, and then as they feed him and give him the bottle we can watch on a monitor to see how the food and liquid flows down his throat. It's definitely an interesting experience.
If he passes the study, we will most likely just begin to give him a couple small snacks a day, and try to promote an interest in food. It would make sense that eating by mouth may go a long way to help with the bowel issues. Please pray with us that Levi passes the swallow study today, and can begin to have some food by mouth daily!
Eating had become very difficult for him at the time. Levi had never had a big appetite, and the food on the ketogenic diet is not very tasty, although we did find some recipes he enjoyed. Also, the diet is very strict, and all meals need to be completely consumed for it to be effective. We found ourselves constantly trying to shove food into him. By the time one meal was finished, it was almost time for the next. The hope is that he wasn't swallowing well because of the continuous stress of being force fed, and now that he's had a break, he will be successful once again.
I've made him two of his favorite ketogenic meals, a bottle of dilute pedialyte, and a bottle of ketocal formula. He will swallow barium, and then as they feed him and give him the bottle we can watch on a monitor to see how the food and liquid flows down his throat. It's definitely an interesting experience.
If he passes the study, we will most likely just begin to give him a couple small snacks a day, and try to promote an interest in food. It would make sense that eating by mouth may go a long way to help with the bowel issues. Please pray with us that Levi passes the swallow study today, and can begin to have some food by mouth daily!
Ketogenic Chocolate Cream
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