Transcript How EHDI Changed Our Lives-

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
• First child in our
family to have
hearing screen
Re-Screening Process
• Returned to hospital for two failed
re-screens
• Pediatrician recommended at twoweek appointment that we follow-up
with an audiologist by six months of
age
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
• 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
• Local Audiologist
• Explained firsthand experience
with Hearing Loss
• Did not reevaluate, but
answered questions
• Gave written
information on
Oral Approach
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
• Clinic Day
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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
• 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
• 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
• 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
• 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
• May 22, 2001
• Expectation was
just to see that
she had received
some stimulation
from the device
• Media Frenzy
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
Family Affair
– Everyday life
became a language
lesson
– Each member of
our family was
sacrificing
Reagan, age 2
• SJI Playgroup
• Discontinued local
services and
received funding
from Part C for
insurance
deductible
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
• 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
• Interest began in
June 2003
• Hearing aid trial
October 2004
• Insurance approval
December 2004
• Surgery/Activation
February 2005
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
• 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.