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Abe's New Safety Bed!

9/21/2016

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For years, we have struggled to keep Abram safe while he sleeps. He's been a head banger since he was old enough to get on all fours and it wasn't until a year ago that I figured out that I could at least wrap his crib slats in pool noodles to keep him safe. He would slam his head so badly into the slats that he'd get huge lumps, bruises and rub his forehead raw and bloody on the wood.

We had originally started the application process for the "Safety Sleeper" over a year ago and unfortunately it did not work out well for our son. It took over 6 months to get the bed tent and we unfortunately found out quickly that although it would have been great for travel - it was not good as a permanent bed because his epilepsy monitoring camera could not see in and the roof of the tent was so low that Abram could not bounce to self soothe without smacking his head. Bouncing is a huge part of his nightly ritual and his only way to self-sooth so we regrettably had to send it back.

We looked into other medical beds but found the Courtney Bed to be the best fit. We liked that it had an open top (for video monitoring), that it is 7' high so Abe couldn't crawl out and that the corners of the frame were fully padded for optimal protection against head banging. We also impressed that it was fully enclosed so that he could not elope in the night and it included a durable medical equipment mattress.  The Courtney Bed was exactly what we needed AND they are custom made to each child so we were able to have the bed made to match our home!

I am extremely impressed with the quality of this bed. It is FDA Approved and considered a Class 1 Hospital Bed. Both of those facts are extremely important when dealing with insurance providers to cover a bed medically necessary to create a safe sleeping space for a child with health concerns like our son! Our Occupational Therapist and Pediatrician both had to write letters of medical necessity to prove exactly why we needed it, which was the easy part!

​We worked with National Seating and Mobility to get it approved/covered by our insurance and with a great surprise, we found out that the Wheelchair Professionals (a third party affiliate of my husbands insurance) covered it 100%. I even called the Manager of National Seating and Mobility to make sure that there wasn't some sort of mistake and she confirmed that our son's bed was 100% covered. I told her that I felt like I had won a prize and that trumpets should be sounding and she was kind enough to indulge me by making fake "trumpet" sounds through the phone for my satisfaction. 

Anyhow, this bed is amazing, it is hand-crafted and made-to-order. It will last Abram a good long while and we are SO HAPPY that he will finally be able to get out of his crib (at FOUR) and into an appropriate sized bed for a growing little boy.

Many thanks to National Seating and Mobility and the Wheelchair Professionals for making this dream come true for our family. Having our son have a SAFE place to sleep is of utmost importance and we are beyond thankful.

Very special THANK YOU to Patrick Cyr of Courtney Beds for crafting something SO BEAUTIFUL that looks like a phenomenal piece of furniture while also not looking like a "hospital bed".  We are in LOVE. The special black wood and charcoal panels match our home wonderfully. Thank you.

Sincerely,
Erin Miller

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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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