Theme: Receiving the Diagnosis

Wondering if your child is going to be the exception. “There are always those cases.”

Page: 3 of 4

Wondering if your child is going to be the exception. “There are always those cases.”

Parents Jordan and Julia describe how their baby daughter’s diagnosis of Infantile Epileptic Encephalopathy came with a “100% failure to thrive” prognosis and how they each internalized this in their own way and own time.

Docs didn’t look at the Whole Child: I...
The Shock of learning the diagnosis
The doctor was very gentle and also clea...
The Diagnostic Odyssey: It never occurre...
Adapting to the Diagnosis: No Heroics,Fo...
So I started questioning …. And it was...
SMA ran in the family, and then it hit u...
I wish there had been more support and f...
Chaplain: “When this happens to me, to...
It’s really entering a whole new cultu...
There is a variety of responses.
I’m like, I don’t need a bucket list...

Related Resources

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The Ordinary Instant and the Shattering of Time
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Guía Para Hablar con Su Hijo/a Sobre el Pronóstico
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Guide to Speaking with Your Child About Prognosis
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So Many Questions
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Guía para Comenzar a Utilizar los Sistemas de Cuidado

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Theme: Receiving the Diagnosis

Wondering if your child is going to be the exception. “There are always those cases.”

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