A Decade with HIE: A Mother's Reflection

Today marks 10 years since we stepped out of the NICU after (at that point in time) the most rollercoaster 21 days of our lives and the story really started to unravel.

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I wanted to write something really eloquent and profound but quite frankly I'm too tired today¬†ūü§£

 

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Making a medical folder

By Lindsey Garrett

Hudson has seen many, MANY doctors in his 10 months of life. Each appointment we spend a good bit of time going over his history, medications and how he's doing. Because of Hudson's lengthy history and long list of medications, it can be hard to remember everything, especially while trying to hold or entertain him. I've seen where some parents have all of their child's medical info in an app or in a notebook, but I didn't know where to begin or what to include so I just started on Microsoft Word. As I thought of things I would add and update as changes came.

My goal for this folder was to: A, make appointments easier, B, have all the information someone caring for Hudson may need, and C, to have this down just in case something was to happen to me. Let's be real, us special needs moms (and dads) do so many things that go unseen. It becomes second nature, so having this typed out has given me so much peace.

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Neonatal Seizure Registry Research Update

The Neonatal Seizure Registry (NSR) is an alliance of nine US centers that have worked together since 2012 to study the causes and consequences of neonatal seizures. Over the past four years, the NSR team has recruited and followed 300 children with neonatal seizures to understand how to the length of treatment may influence development and the risk of epilepsy, as well as the impact of having a child with neonatal seizures on parents’ well-being.

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Neurology Minute Podcast: HIE Awareness

Hope for HIE was featured on the American Academy of Neurology podcast "Neurology Minute" for HIE Awareness Month. Take a listen below!

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Missing Noah's Hammock in the time of COVID

Life chillaxing on the hammock was beautiful... feet extended ...free floating in pure air. Breeze at my back. Of all the things I miss about life before quarantine. I miss Noah’s hammock the most. He was never without it. Most never have taken any note of it. It took me 15 years to weave it. I picked each strand of rope carefully and worked tirelessly... day & night making all the right connections ... until one day, it had just the perfect amount of support to lift Noah up. Then, I placed him in it & he smiled.

Most never realize how extensive & important community services are for individuals like Noah. Whenever you have met Noah in the past, you may have not realized how supported he was. You just saw him ... his smile but in reality ... Everywhere Noah goes... He never travels alone. He is supported by a hammock of community services intricately woven by me.

Each strand of rope in his hammock is essential to his well being. If you remove even one. The whole hammock is less supportive. It can work but the integrity of the whole structure is compromised. If you remove too many strands in the hammock of services, it can be dangerous. Someone can get hurt. Noah could get hurt. I could get hurt. It could hurt our family.

 

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