Day 4: How has your attitude/family/friends' attitudes changed towards tube feeding? What has awareness of the positive benefits done to change perceptions?
My attitude towards tube feeding has changed 100% since Isabella got her's put in. I was very against tube feeding for Isabella since she could always orally feed. I felt like I was letting her down when the doctors suggested that a gtube would benefit her. Looking back now, I realize this was one of the BEST decisions we have made for Isabella. I no longer have to fight her to take her medications twice a day, I am able to control her water intake, which is necessary to control her DI and she is no longer using precious energy and calories to eat, instead she is using these to grow.
My family and friends have been 100% accepting when we decided to get the gtube. I think that people seeing Isabella feeding through her gtube has greatly benefited people's perceptions. They ask questions and I am very open about answering them.
Day 5: Topic - The need for greater awareness in the medical community - Explain a situation where a clinician didn't understand tube feeding and what was the impact.
We have not run into this situation yet. But if we were to ever, I would be more than willing to explain the process and reasoning behind it.
Day 6: Topic - What do you want clinicians to know about the day-to-day life with a feeding tube?
That we as parent probably know as much or more about our child and her condition. Please don't talk down to me, that is just disrespectful. Also, read her chart before coming into the room, repeating my child's medical history over and over get's old really quick. :)
Day 7: Topic- Share your awareness idea.
Isabella competes in pageants around Wyoming. During the pageants I share her story.
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