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About Me

 After an uneventful pregnancy, I was thrust into the position of becoming a momvocate for my daughter, who had a series of very serious health issues that initially did not appear to have any particular cause.  For instance, she was diagnosed as failure to thrive when she failed to grow properly, but we did not have an underlying reason for this diagnosis.  Determined to find one, I brainstormed specialists who might be able to give me some answers.  This lead me to take her to an ENT.  Within seconds of a nasolaryngoscopy, it became clear why she couldn't eat.  

She had a large bubble in her throat that inflated and deflated like a chirping frog.  The ENT didn't have a name for it initially, but through research we discovered it was called a "post crichoid cushion," a phenomenon with only one published study from 2012. The suggested course of treatment was to get her an NG-tube to ensure she received proper nutrition, and otherwise wait it out.  As she grew, her airway and esophagus would grow, while the bubble or post crichoid cushion would remain the same size, and be less of an impediment as she learned to swallow around it.  She eats like a champ now, so the cushion is no longer a concern for us.  However, after that resolved, a number of other issues surfaced.  

So we took her to a geneticist to be sure there weren't any lurking issues that would surprise us like that again.  Unfortunately, the geneticist found a one-of-a-kind chromosomal anomaly.  In other words, we don't know what her overall prognosis will be.  We don't know if she'll ever talk, read, or be able to care for herself.  Which means that I am her warrior, her advocate.  I am the one who pushes for the best care possible.  I want her to actualize her best life, and it's something that I fight for every day.

I have a leg up on a lot of people when it comes to this.  I am a lawyer, so I have been trained in persuasive writing, adversarial strategy, and oral argument.  And I have spent the last ten years fighting to get the best outcomes for my clients.  I have been able to get care and services for my daughter in record time, after being told it would be months to a year before she would have the opportunity to access those services.  But I firmly believe that no child should have to lose precious time, particularly when each day in very early childhood is so important.  So I want to share the knowledge that I have.  My daughter's care has thus far been the exception.  It should be the rule.

I hope you find something helpful here to assist you on your journey as an advocate for your child.  If you have any questions, please feel to reach out to me directly.

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