HankStrong

HankStrong

Male / 7 years & 6 months

HankStrong’s Journey

Share the first part of HankStrong's story for readers on Sleuth! When and why did you start to feel concerned?

Hank was born in 2015. The (facebook) world was waiting as family and friends literally across the globe watched for the first picture. His birth was uneventful. Great APGARs and no problems. Our real story starts in August of 2015. Hank had failed his newborn hearing tests and his Audiology referrals had failed too. We had an ABR done and determined that Hank had total hearing loss in his left ear. She was really concerned because he had a small head and we had no family history of hearing loss.

What was your experience, if any, seeking a diagnosis or treatment?

In September 2015, we met with a geneticist. She performed various tests in office and we spent a long time talking. Hank had some things she didn't like going on and agreed thay his head was too small. We had an ultrasound, MRI, and bloodwork to do and we would come back in a month. On October 21, 2015 we got our diagnosis. The TORCH panel came back clean, except for 1. The Cytomegalovirus panel was positive and it appeared that Hank was still shedding the virus. His MRI was not normal. She said there was a malformation of his brain development and the condition was called Polymicrogyria. Because his covers most of his brain with very few unaffected lobes, his is Bilateral Polymicrogyria.

Do you have any other thoughts or advice you would like to share from this experience?

All of those things mean this: Hank is a beautiful and smart little man who is living his best life. He loves to swim, ride his bike, watch cartoons, and eat ice cream. 🗨He can't talk so we take non-verbal cues mixed with some photo cards to communicate. 🚶‍♂️Hank can't sit, stand, or walk unassisted so everything is by the aid of equipment that Hank moves through his world. 🍼Hank does not self feed and cannot chew his food. I make a special blended smoothie and he eats pureed baby food. Hank is developmentally about 6 months old. He is frozen there. We may gain a few skills here and there but no major advancements. Despite all the things Hank cannot, there a million tiny things he can. He makes a difference in so many lives and is such a light to mine. Hank has brought a new purpose to me, advocating for change and inclusion. Changing our world to make room for kids like Hank. Thank you for making it this far. I hope you find hope here. Joy, encouragement, education.

Timeline

Below is a timeline of HankStrong’s observed symptoms, diagnosed conditions, and treatments and therapies.

More about HankStrong

Eating Habits and Behavior

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6 months – 85 months

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HankStrong completed this assessment at 6 years and 2 months.

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HankStrong’s Notes

Signs & Symptoms

2021

Microcephaly

Sign or Symptom
At 2 months
Very Mild

Ongoing Symptom

Observed at 2 months

Observed: Once a Day

Very Mild

Diagnoses & Conditions

2021

Unilateral Hearing Loss

Condition or Diagnosis
At birth
Very Confident

Condition

Diagnosed at birth

Very Confident

Comments

Failed newborn hearing screening in hospital. Confirmation at 3mo appointment via ABR.

Related To

Cytomegalovirus

Condition or Diagnosis
At 6 months
Very Confident

Condition

Diagnosed at 6 months

Very Confident

Bilateral Polymicrogyria

Condition or Diagnosis
At 6 months
Very Confident

Cortical Visual Impairment

Condition or Diagnosis
At 2 years
Very Confident

Condition

Diagnosed at 2 years

Very Confident

Hypospadia

Condition or Diagnosis
At 1 month
Very Confident

Condition

Diagnosed at 1 month

Very Confident

Post-Crichoid vascular malformation

Condition or Diagnosis
At 1 year & 1 month
Very Confident

Condition

Diagnosed at 1 year & 1 month

Very Confident

Comments

Diagnosed via CT scan following a visit to ENT for snoring. Sent emergency to UF Shands for evaluation.

Related To

Treatments

2021

Physical Therapy

Treatment or Therapy
At 9 months
Neutral

Ongoing Treatment

Began at 9 months

Neutral

Comments

PT goals are to strengthen hypotonia & encourage movement.

Occupational Therapy

Treatment or Therapy
At 9 months
Neutral

Ongoing Treatment

Began at 9 months

Neutral

Comments

OT focuses on fine motor skill

Related To

Speech & feeding therapy

Treatment or Therapy
At 9 months
Neutral

Ongoing Treatment

Began at 9 months

Neutral

Adenoidectomy

Treatment or Therapy
At 1 year & 2 months
Helpful

Treatment

Began at 1 year & 2 months

Helpful

Comments

Hank has grade 3 OSA.

Related To

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