How to be a Fierce Medical Advocate for Your Child

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Having a child with complex medical needs is never the plan, but rather something into which you’re thrown, head first.  When you have a child like Addie, it’s important that you advocate for her ferociously. My role as an advocate for her started in the NICU - when Adeline was constantly getting sick, with regularity, every 10 days.  She’d start to have feeding intolerance, her belly would blow up, and she’d start excessively vomiting.  The doctors would say that she had a C-Papp belly, or that she was just a "happy spitter". I heard their words, but I knew something wasn’t right.  Each time it occurred, the treatment was the same.  NPO and gut rest until she baselined. But when we reintroduced feeds, the cycle would repeat.  It was the first time I really thought that I needed to question the plan. These professionals weren’t seeing what I was seeing.  I needed to voice my concerns.  I was with her all day long and there was nothing "happy" about her spitting.  It was at that moment I stepped into the role as mother AND advocate, and I haven’t stepped out since!

She was on a journey that required her to be FIERCE.
She was up for the task
— Unknown

 

Do you have more ideas on how to be a fierce medical advocate??

Comment below and i will update the post!