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Loving Little Ellie
Seeking answers for our daughter's undiagnosed disease.
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Ellie's Project
Popular Posts
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...
When it all began...
Pediatrician, Genetics, Neurology, Audiology, Endocrinology, Nutrition, Opthamology, Plagiocephaly, Physical Therapy, Occupational Th...
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...
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 ...
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...
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...
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...
Hungry for Help
I have not wanted to talk about our feeding issues for a long time because they cause so much pain in my heart. This has been absolutely t...
The Smallest Preschooler
Ellie goes to preschool. WHAT IN THE WORLD WAS THAT GOING TO LOOK LIKE?! And, this is technically her last year before becoming a kind...
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