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LIFE WITH LIVY

6/17/2011 - Olivia's Daily Food And Medication Routine


Olivia has an extensive feeding and medication schedule. We start the morning off at 6:30 AM, 7 days a week, 365 days a year. The breakdown goes like this:

6:30 AM – Meds
7:30 AM – Food and Meds
8:30 AM – Food and Meds
10:30 AM – Food
1:30 PM – Food and Meds
4:30 PM – Food
7:30 PM – Food and Meds
8:30 PM– Food and Meds

For us, this schedule is a part of our lives regardless if we are at home, at an appointment or at a restaurant. Olivia is fed through a tube in her stomach called a MIC-KEY button. Sometimes, she gets agitated when hungry. But other than that, it is up to us to follow the schedule. She is not like a typical child who may eat a large meal and then not be hungry for a longer period of time. She is fed a certain amount from her recommended daily intake at regular intervals to ensure she has the proper nutrition. We have a half hour leeway with her medications but if we stray too far from that, it becomes a risky proposition.

Olivia visits a gastroenterologist and a nutritionist every six months. They oversee her digestion and caloric/nutritional needs. Her neurologist appointments take place every 6 months in Gainesville, FL (a 6 hour drive round trip). During those visits, we discuss her progress and her medications. Making adjustments to medications takes many months. If we are able to wean her from a particular drug, it can take as long as six months or more depending on her current levels.

Feeding by mouth is a skill that Olivia is learning slowly. Some of the things she currently can eat are yogurt, applesauce, and most pureed foods. One of her favorites is her grandmother’s chicken fricassee gravy. Basically, foods she can swallow without much chewing. That of course includes ice cream and melted chocolate, treats that most children love. We figure the enjoyment of eating is a part of life that every child should experience. Someday, we hope that Livy will be able to sit at the table and feast on a holiday meal. But until then, we are taking baby steps and enjoying what she has accomplished thus far.

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