Thursday, April 24, 2014

Big boy status..

One of the most frequently asked questions that we receive is "When can he get rid of that tube?". Most times people see a picture of him without it and assume it's gone forever. I would be lying if I said that this didn't bother me. Honestly, most times it does more than bother me. Eating has been one of the most frustrating aspects of kidney disease. Dialysis, medicine, doctors appointments, and all of the other things that come with this life were difficult, but feeding is downright frustrating. It's hard to remember a time when my baby willingly ate an entire bottle, but he did. In fact, for the first year and half of his life I fed him every three hours on the dot like clockwork. Now, the smallest feeding victories feel like Olympic gold medals.

 Two weeks ago, Parker's team suggested that since he was finally chewing and swallowing food that we should experiment a bit with his feeds. We completely cut out his nap time feed through his machine in an attempt to build his appetite. There were strings that came along with this, though, a set of requirements that he had to meet. As long as he was eating 400 calories of food, and drinking 500 ml's of fluid,we didn't have to return to nap time machine feeds. I'm proud to say that in those two weeks, even with his first cold, we did not have to use his feeding machine during the day. In fact, today he ate an all-time record of 850 calories, and actually ate two whole cups of yogurt/fruit blend with a spoon. This is monumental for him! Up until the last two weeks he would not eat anything at all with a spoon, much less something cold and puréed. The only thing we could get him to eat was crispy, crunchy snacks like chips, goldfish, and cookies. 

So now we are working toward a new goal. If he can eat 1300 calories and drink 1100 ml's of fluid, mainly water since that's all he will drink, everyday for a month straight, we can take the tube out. So, the answer to the infamous question is, when he meets his calorie and fluid goal-given by his doctors-consistently, then we can take out the tube. I promise you all that the day that happens, I will be screaming from mountain tops, and you will all know that the tube is gone for good. Seriously, the whole town will hear me. I Promise! 

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