January 11, 2009

Overcoming Movement Disorder

Before I continue with the "Operation Diagnose Bertrand" from my last post, I'd like to discuss the blog's title change. We changed the name from "The Chronicles of Bertrand" to "Overcoming Movement Disorder" for several reasons--the first of which is that I am inherently optimistic that we WILL find a way to successfully overcome Bertrand's movement disorder.

The other significant reason for the title change relates to reaching out to and helping other parents to children with movement disorders. As I continue pouring what I've learned from Bertrand's case into this blog, hopefully it will become resource and relief for other worried parents. It was, and continues to be, difficult feeling so alone... so un-googleable.

It has become my personal mission in life to make search terms like "jiggly baby" result in at least some medically helpful information in addition to all the annoying youtube videos. When you don't know the medical terms Chorea or Ataxia (in my opinion, fancy words for varying degrees of jiggly) how else are you supposed to find information about your child? And, what to ask your doctor?

UPDATE: I called the laboratory when it first opened today. It is now arranged for Bertrand to get his blood drawn tomorrow during the process of sedation--while they are inserting the IV. We try to minimize the number of times he gets pricked since it is not his favorite thing.

2 comments :

  1. Querida Cristy, me da una inmensa emocion y orgullo de que quieras compartir la historia que vives con Bertrand para ayudar a otros padres. Vas a hacer mucho bien. Besitos para Bertrand.
    Te ama, Mami

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  2. If we can keep even one other person from having to go through this stress, this blog will have been worth it!

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