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How EHDI Changed Our Lives. The Emerson Family Story. Introduction. Tony and Allison Emerson Reagan, age 4 Siblings: Katie, age 7 Sydney, age 5 Andrew, age 8 mos. . Reagan’s Birth. June 28, 2000 Full-term pregnancy, no complications with delivery

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how ehdi changed our lives

How EHDI Changed Our Lives

The Emerson Family Story

introduction
Introduction
  • Tony and Allison Emerson
  • Reagan, age 4
  • Siblings:

Katie, age 7

Sydney, age 5

Andrew, age 8 mos.

reagan s birth
Reagan’s Birth
  • June 28, 2000
  • Full-term pregnancy, no complications with delivery
  • First child in our family to have hearing screen
re screening process
Re-Screening Process
  • Returned to hospital for two failed re-screens
  • Pediatrician recommended at two- week appointment that we follow-up with an audiologist by six months of age
first audiologist appointments
First Audiologist Appointments
  • Reagan was two weeks old at first appointment
  • She was too young for most tests
  • Tried twice to get ABR completed while sleeping
  • Waited for Reagan to reach 10 lbs.
  • Sedated ABR September 13, 2000
  • No response on ABR test
accepting the news
Accepting the News
  • Misunderstood results as we left the office
  • Initially asked the audiologist what we should do about services and got very little advice; handed a pamphlet about our county Infant Toddler program
  • Kept the results from most of our family
  • Began to make calls about where to learn sign language
second opinion
Second Opinion
  • Local Audiologist
  • Explained first-hand experience with Hearing Loss
  • Did not re-evaluate, but answered questions
  • Gave written information on Oral Approach
ct scan and ear molds
CT Scan and Ear Molds
  • During the ABR, discussion began with the audiologist about Cochlear Implant possibility
  • Sedated for the CT scan and made molds at same time
  • Reviewed results with local ENT and discussed how we would proceed
  • CI Candidacy in the distance due to minimum age requirement of 18 mos
boystown national research hospital
Boystown National Research Hospital
  • Clinic Day
    • Medical exam
    • Sedated ABR – No response
    • ENT
    • Hearing aid fitting
    • Early Interventionist
    • Genetic interview
    • Eye exam
  • Our local audiologist met us in Omaha and attended our appointment
  • During trip we visited the Omaha Hearing School
hearing aid trials
Hearing Aid Trials
  • Phonak Pico Forte Aids
  • Paid for them out of our own pocket so as not to delay amplification
  • Due to Reagan’s age (4 months) by the time we received new molds they were usually too small and thus would feedback almost continuously. This was a time of great frustration.
early intervention
Early Intervention
  • Began sign language classes in late September
  • First service provider was Teacher of the Deaf/HH – met at Father-in-law’s home because of school district boundaries
  • Second service provider met in our home but, did not have qualifications to work with Deaf/HH
  • Infant Toddler Network eventually contracted with the Teacher of the Deaf/HH
  • Learned early in the process what was meant by the term ‘advocate for our daughter’
  • Total Communication was used because it was the strong recommendation of the service provider and amplification was not working well
cochlear implant candidacy
Cochlear Implant Candidacy
  • Reagan remained a no response with the use of hearing aids
  • Much of therapy time was spent trying to evoke a response; very disheartening and frustrating
  • Felt like goal of Reagan becoming an Oral Communicator was slipping away with use of hearing aids alone
  • January 2001 began appointments in Kansas City at the Midwest Ear Institute
  • Insurance approval came fairly early in the process
ci surgery
CI Surgery
  • April 26, 2001
  • Reagan was 9 months old; the youngest CI recipient at the Midwest Ear Institute
  • Surgery lasted nearly four hours due to complications from chronic ear infections
  • Recovery was fairly smooth
ci activation
CI Activation
  • May 22, 2001
  • Expectation was just to see that she had received some stimulation from the device
  • Media Frenzy
ci habilitation
CI Habilitation
  • St Joseph Institute for the Deaf – Kansas City
    • Twice weekly appointments at their location
    • Utilized health insurance
  • Continued therapy session in our home with Teacher for the Deaf/HH
  • Discontinued signs during therapy sessions
language development and therapy
Language Development and Therapy

Family Affair

  • Everyday life became a language lesson
  • Each member of our family was sacrificing
reagan age 2
Reagan, age 2
  • SJI Playgroup
  • Discontinued local services and received funding from Part C for insurance deductible
reagan age 3
Reagan, age 3
  • SJI – KC
    • Individual therapy reduced
    • Two full-days of preschool weekly
    • Funded entirely by school district
    • Experienced Transition
  • Church preschool
    • Small class size
    • No significant accommodation
reagan age 4
Reagan, age 4
  • Attends preschool at local elementary school
  • Services from Teacher of the Deaf
  • FM system
  • Resumed therapy at SJI – KC after Bi-CI
bi lateral ci
Bi-lateral CI
  • Interest began in June 2003
  • Hearing aid trial October 2004
  • Insurance approval December 2004
  • Surgery/Activation February 2005
why we are grateful for ehdi
Why we are grateful for EHDI
  • Very early in Reagan’s life we began to gain knowledge and prepare for decisions
  • Thankful for early Cochlear Implantation
  • Significantly helped us achieve our goal to have Reagan become an oral communicator
conclusion
Conclusion
  • Our persistence with gaining appropriate intervention and dedication to aural habilitation resulted in some wonderful progress for Reagan.
  • Newborn Hearing Screening did not allow us to cure our daughter.
  • UNHS allowed us to gain an insight at the earliest opportunity into a fascinating world many hearing people never experience.
  • We are thankful that we knew from birth that Reagan had so much to teach us.
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