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Urge Grassley to Move Cannabidiol Bill Forward

11/30/2015

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Hey Everyone! We hope you had a safe holiday weekend. It was wonderful for us as Abram didn't have therapy or doctor's appointments for the first time in years. It was wonderful! We didn't do much but cook delicious food, spent time with our family and did a lot of swinging and playing with firetrucks. 

He is officially over the 150 days seizure free mark and doing well in all of his therapies. His goals with his Speech Language Pathologist have totally been revised, we are learning new pressure point techniques with his Occupational Therapist and his Feeding Therapist is getting ready for him to work with and try an entirely different food group. We just finished up with "red" food. I'm curious to see what will be next?!

Epilepsy Awareness Month is officially over today but it came to a bitter-sweet end as a little article I wrote got published in the Cedar Rapids Gazette. You can read the full article, here.

 We don't have much else to report because the last week has been a fantastic reprieve away from the reality of therapies and appointments and a lot of time driving back and forth to all of it.  The weather is starting to turn which always makes winter driving more difficult but the outcome is so worth it. We even interviewed with ChildServe today (where Abram gets the majority of his therapies) and they will be doing a story on Abram and his success with walking! One year ago, Abram wasn't independent at all and now he is practically running.

Time flies. Life is Good. Enjoy your December!!!!

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    About Me

    Erin is a green-haired, tattoo-covered mama powered by sarcasm, iced coffee, and the occasional emotional spiral.

    She’s raising an incredible son with a rare genetic condition, advocating with sharp knowledge and a softer heart — because both matter.

    She's trying not to lose her mind in a house that includes her husband, her son, her mother, a team of no less than five workers, and approximately 3,000 daily interruptions.

    She’s got a sixth sense for fake people, a deep love for horror movies, and a soft spot for anyone who’s ever felt like too much and not enough at the same time.

    Erin doesn’t pretend life is perfect. She shows up messy, honest, and real—whether she’s in advocacy mode, snack-fetching mode, or “why is everything a mess” mode.

    ​She’s built of grit, wit, compassion, and just enough rage to get things done.​


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  • Home
    • About Abe >
      • Abram’s Viral Photo: The Wizard of Awws (Baby Ming) | Abram Mayhem
  • Blog
  • In the News
  • UBE2A Deficiency Syndrome
    • UBE2A Publication List
    • Abram's UBE2A Symptoms and Diagnoses >
      • Abram’s Pineal Cyst Journey: Insights, Updates, and Long-Term Care >
        • MRI Imaging of Pineal Cysts in UBE2A Deficiency
    • Why Genetic Testing
  • Helpful Links
  • Abram's Art

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