How EHDI Changed Our Lives The Emerson Family Story.

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How EHDI Changed How EHDI Changed Our Lives Our Lives The Emerson Family Story The Emerson Family Story

Transcript of How EHDI Changed Our Lives The Emerson Family Story.

Page 1: How EHDI Changed Our Lives The Emerson Family Story.

How EHDI Changed How EHDI Changed Our LivesOur Lives

How EHDI Changed How EHDI Changed Our LivesOur Lives

The Emerson Family StoryThe Emerson Family Story

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Introduction• Tony and Allison

Emerson• Reagan, age 4• Siblings:

Katie, age 7Sydney, age 5Andrew, age 8 mos.

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Reagan’s Birth• June 28, 2000• Full-term

pregnancy, no complications with delivery

• First child in our family to have hearing screen

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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

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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

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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

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Second Opinion• Local Audiologist• Explained first-hand

experience with Hearing Loss

• Did not re-evaluate, but answered questions

• Gave written information on Oral Approach

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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

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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

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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.

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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

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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

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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

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CI Activation• May 22, 2001• Expectation was

just to see that she had received some stimulation from the device

• Media Frenzy

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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

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Language Development and

Therapy

Family Affair– Everyday life

became a language lesson

– Each member of our family was sacrificing

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Reagan, age 2• SJI Playgroup• Discontinued

local services and received funding from Part C for insurance deductible

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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

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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

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Bi-lateral CI• Interest began in

June 2003• Hearing aid trial

October 2004• Insurance approval

December 2004• Surgery/Activation

February 2005

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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

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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.