Getting fitted for orthotics

For some of our HIE children, some type of orthotic (sometimes called a brace) may be necessary to help with development, ambulating and balance. There are a few different types of orthotics that may be considered. For some children, simply a shoe insert might be a good tool. For others, a solid or articulated (hinged) Ankle-Foot orthosis (AFO), or a short Supra-Malleolar Orthosis (SMO) might work best.

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That First Year - A Dad's Perspective on Getting Through

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Hope for HIE is a wonderful organization full of other dedicated families in similar situations. Every day new parents join on Facebook or read this website full of questions, uncertainty, and searching for hope. Maybe you got here because you searched for "What is HIE? Hypoxic-Ischemic Encephalopathy."

I feel like I’ve gained some perspective on what our process was like regardless of the results.

It's only fair to share that many of the answers you are seeking can't and won't be known for some time by anyone. The laundry list of "What HIE Can Cause?" is longer than any parent would like to read but what is critical for you to hear is that every situation is unique.

And that's why I'm taking time to write this blog post. So many other parents and I are in your shoes, not in the past tense kind of thing because we all learn that it's an ongoing process.

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Connecting through loss

A devastating loss suffered by two families brought them closer together than they could have ever imagined.

Becky and Krista connected through Hope for HIE’s online forums over the loss of their children to HIE. They got even closer when discussing the fears of having another baby after the trauma they had both had in their previous birth experiences.

 

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Summer fun

We bet you can't look at this photo without smiling. 

 

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HIE kiddo Remi got to try her hand at skiing with an adaptive ski program. And she had a blast!

Remi's mom heard about the program when they went to a ski show at the beach. Her husband insisted they sign Remi up. Jamie was nervous at first, but then she saw Remi laughing and squealing and reaching for the water. 

"I was super nervous. I am not really too daring when it comes to Remi, but my husband really wanted her to experience it and I was happy we did. I had tears of fear and joy when they took off," Jamie said. 

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Meeting other HIE families

For families of children with an HIE diagnosis, the journey can be lonely.

Often, other families don’t look like ours. Their lives aren’t the same. Their routines are different.

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