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UP!

5/14/2015

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Hello, Friends!
I just wanted to share that today Abram had an awesome day at Therapy! He said "UP!" to his speech therapist and mimicked "Ohhhhhh" in the mirror for the FIRST TIME EVER! He's been seeing her for over six months and today was the day he actually said a word in front of her. Sadly, she told me that she is leaving and we'll have to start over with a new Speech Therapist but HE VERBALIZED today and that was huge. He'd gone months without making much noise or babbling so we were getting very concerned and then all of a sudden he was making "brrrrrrrr" noises all day yesterday. I'm excited about that.

He also actually pedaled the trike with his Occupational Therapist today as well! He wanted to keep going down the hall even! So, we need to get on the ball and get the adaptive pedals for his trike so we can do the same at home. Right now he's still a little too small to reach the pedals so he needs some adaptive equipment to add on to the pedals to make 'em taller and to also strap his feet to them since he has Hypotonia it's easier for him to be strapped on for ease of movement! His OT sent us a link to some pedals that should work so we need to get those ordered soon so we can get him some good 'ol fashioned toddler exercise.

I went through all of his medical records tonight and have everything ready to go for Minnesota next week. Even made the hotel reservation for Tuesday Night as I plan on going up a day early to try to have an afternoon of fun with him before we're confined to one floor of a hospital! This kid loves being outside so i need to get in as much outside time as possible before we are admitted!

Everything is coming together nicely. Thank you so much for your help and for sharing Abe's story. You are amazing.

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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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