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Kiersten's GI manages her feeding issues, and we just recently added a dietitian to our roster. She was seeing OT for feeding difficulties, but it seemed to have the opposite effect on her and she completely shut down and refused all solids for awhile. If she doesn't start orally taking 75% of her nutritional intake by her 5th birthday, then I am going to take her to an inpatient feeding clinic.
She also sees an Endocrinologist, Neurologist, Geneticist, Cardiologist, and Ophthalmologist to manage her non-feeding related issues.
We've slowed down a lot now that we've gotten her "stabilized". She down to yearly or every 6 months on all but Endo and GI. I'm enjoying the peace although it probably won't last. You are so right about how exhausting it is. For thew first 3 1/2 years of her life it seemed like all we did was go to doctor's, hospitals, and therapist. She was always sick, she didn't sleep well, we were broke and completely stressed out.
I want to give all you ladies and your little ones a big hug because I understand what you are going through.