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Loving Little Ellie
Seeking answers for our daughter's undiagnosed disease.
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Ellie's Project
Popular Posts
When it all began...
Pediatrician, Genetics, Neurology, Audiology, Endocrinology, Nutrition, Opthamology, Plagiocephaly, Physical Therapy, Occupational Th...
Why it will NEVER be enough
If you are new to Ellie's Story, START HERE So quietly swept under the surface of existence, this underground world of unknown fears i...
The Nameless One
If you are new click here ! Everyone who has child with a named disease or syndrome has had to go through some sort of undiagnosed jour...
Uncertainty.
It is the loneliest place to be when you know something terrible is happening to your child before any doctors can confirm it. They migh...
In the quiet hours...
In the quiet hours... When I finally get a few moments of silence, I feel an unsettling nervousness. If I am not at an appointment or ...
Every Step of the Way
A little different from my usual blog but felt this was too important not to share. When you find someone who makes such a difference in yo...
UN-Diagnosed
This quiet hesitation that has been eagerly lingering in the back of my heart... Ellie does NOT have Paternal UPD 14 The lab was...
Closing an open heart
I know it has been a long time since my last post. I think going 100% for the last 3+ years has made me so exhausted that I have just wante...
Our Visit to the National Institutes of Health - Undiagnosed Disease Program
Our visit to the National Institutes of Health - Undiagnosed Disease Program and what we learned. The highly anticipated visit to th...
That Special Room
When I was younger, all that I knew about kids who were "different" was to not stare. We were never told anything about them or w...
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