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.

Reagans 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 two- week 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 first- hand experience with Hearing Loss Did not re- evaluate, 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 –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 Reagans 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-laws 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 Reagans 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.