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Emalyn's Dream Journal 

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Age 8

Motto: "You're Perfectly Beautiful"
Diagnosis: Infantile Scoliosis
High School Team: Vista Ridge HS Cheer

10/21/2021

Emalyn has always struggled with speech delays. At the hospital she failed her hearing test. She received a hearing test every six month. The test showed inconclusive but the ENT attributed it towards her chronic ear infections. At age 7 was the first time the ENT said she has profound hearing loss.

 

In January of 2020 she received her hearing aids. Since she received them her use of language soared. This access to language has resulted in her reading significantly improving. She can read short chapter books. We couldn’t be more proud of her.

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7/19/2021

Emalyn made the trek to Scottish Rite hospital in Dallas to lengthen her MAGEC rods. Emalyn’s ability to look at the positive in the midst of hard days is something to be admired.

 

Heather, Emalyn's mother relayed the story when Emalyn's orthopedic asked her how her summer is going so far, Emalyn then responded, “I went to acting camp and played Wicket - and I was the cutest!”. Then she started her infectious laughing and had everyone laughing too, including the nurses and researchers.

 

Dr. Ramo responded with, “You are the cutest”! He proceeded to tell the other doctors how low her anxiety has been despite all that she has been through. When we got home Emalyn said,

“Mom, that was the best day ever”

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April 2021

August 2019

Emalyn at 8 months old was diagnosed with infantile scoliosis and within 3 months her curvature progressed from 20 degrees to a 53 degree curvature. This rapid progression concerned her orthopedic resulting in an MRI showing abnormality on the left ventricle of her brain and resulted in a diagnosis of colpocephaly. Emalyn is developmentally delayed and receives special education services to support her educationally. 

Her neurologist then tested her for a genetic disorder and results showed a rare genetic deletion that is so rare it was not associated with any particular syndrome, or well tested. The rare genetic deletions contribute to a host of medical conditions. Emalyn had corrective heart surgery at 2 years old. When she was five years old she received a g-tube due to being significantly underweight, she also was hospitalized for five months at Texas Scottish Rite Hospital to undergo Halo traction treatment and MAGEC rod surgery, after her curvature of her spine progressed to 90 degrees. 

Emalyn continues to be at risk to undergo emergency surgery related to the 200 percent complication rate associated with the MAGEC rod surgery. There is a practice in Japan known as Kintsugi also referred to the art of previous scars where they take broken ceramics and repair it with gold. The Japanese arts teaches the broken objects are not something to hide but to display with pride.

 

Each surgery, or scar, or new diagnosis is something she takes with strides and contributes towards her resilient spirit.

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