Ellie's Project
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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... -
Pediatrician, Genetics, Neurology, Audiology, Endocrinology, Nutrition, Opthamology, Plagiocephaly, Physical Therapy, Occupational Th... -
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...
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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... When I finally get a few moments of silence, I feel an unsettling nervousness. If I am not at an appointment or ...
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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... -
This quiet hesitation that has been eagerly lingering in the back of my heart... Ellie does NOT have Paternal UPD 14 The lab was... -
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... -
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...
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Our visit to the National Institutes of Health - Undiagnosed Disease Program and what we learned. The highly anticipated visit to th...
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