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Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

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Fall Sensory Fun for Everyone

Fall Sensory Fun for Everyone

October 27th, 2015  | Sensory  | Therapy  |  By CLARISSA STUCKENBERG

Are you looking for a fun Fall craft that is doable for any ability, mess-free, and festive?  My son Huxley and I found a great way to make some fun decorations using a pumpkin shape cut out of construction paper, a little plastic wrap, some blobs of paint and some tape. I laid the pumpkin on top of plastic wrap, added […]

About Tagging Me in That Post…

About Tagging Me in That Post…

October 22nd, 2015  | Advocacy  | Care  | HIE Education  | Special Needs  |  By KARISSA SHEPHERD

A few months ago, a post made the rounds about a boy with Cerebral Palsy completing a triathlon. What a wonderful achievement for that boy to complete such an intensely physical feat, seemingly against the odds! But with the sharing of that video, came the onslaught of beautiful, well-meaning friends who kept tagging me on that photo and sharing the […]

Why We Took Our Son to a Ballgame Instead of Physical Therapy

Why We Took Our Son to a Ballgame Instead of Physical Therapy

October 22nd, 2015  | Self Care  | Therapy  |  By BETSY PILON

Life can be pretty overwhelming when your precious child receives the diagnosis of hypoxic ischemic encephalopathy (HIE). Your hopes and dreams of motherhood shift, and your life is intensely focused on therapies, doctor appointments and research. You wonder how people are able not only to attend all of these appointments, but also manage to implement the slew of home programs that occupational, physical […]

What Should’ve Been – An HIE Dad’s Poem

October 14th, 2015  | Care  |  By NICK BURTON

What should’ve been A dream unfulfilled, but forever imagined So unextrordinary a fantasy, unrealized Should’ve been What never was Bonding time and cord cutting A wheelchair ride and balloons A clever announcement with rustic font Never was What was Barely saved, Mama shaking Just met, say goodbye for ambulance trip Signing forms and breaking down Papa yells at strangers to […]

GoTo Seat

GoTo Seat

February 19th, 2015  | Equipment  |  By ANN GOELLER

Firefly makes multiple excellent products for children who struggle with mobility or seating. For some children, the GoTo seat has been a great fit. For our little one, it doesn’t work in all situations because of her low trunk control and head support. We have the size 2. If the seat our daughter is in can recline, it works well. […]

SHARE YOUR HIE STORY

One of the ways many HIE families work through the trauma of their journey is sharing their story to help other families who will find us in their own HIE journey. We hope you’ll take a few minutes and share yours with us. We’ll publish it to our Family Stories blog!

Share Your Story

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