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Wednesday, May 22, 2013

Our Story: Introduction

Belalu, May 2012
Around this time a year ago, we were in limbo. We were waiting for an appointment with the geneticist to see if she would diagnose Belalu with a form of dwarfism.  J was pouring over webpage after webpage, trying to determine if she had dwarfism, and if so, what kind. I was trying to stay neutral, waiting to see what a Dr. said before reacting to something that may not have even been true. He would come to me several times a day with medical terminology I had never heard before and couldn't wrap my head around "lordosis" "foramen magnum" "skeletal dysplasia"... My head spun with it all. Then there was the diagnosis. And I began writing here, to sort out my thoughts. However, I never did get around to talking about the year and a half before that: my pregnancy and her first months. I kept meaning to, but just never did. So, now, on the one-year anniversary of learning that Belalu has hydrochondroplasia, I want to do just that. I'll post by stages. I remember first entering the LP world and soaking up every bit of info I could find that could give me some insight into my daughter's condition, so I'm hoping that parents in a similar situation may find this helpful or interesting in some way.


  1. It's amazing when you look back and remember everything you've been through and then you see what the outcome is and we wouldn't change anything about our amazing children! I look forward to reading your story! Xoxo