How EHDI Changed Our LivesThe Emerson Family Story
IntroductionTony and Allison EmersonReagan, age 4Siblings:Katie, age 7Sydney, age 5Andrew, age 8 mos.
Reagans BirthJune 28, 2000Full-term pregnancy, no complications with deliveryFirst child in our family to have hearing screen
Re-Screening ProcessReturned to hospital for two failed re-screensPediatrician recommended at two- week appointment that we follow-up with an audiologist by six months of age
First Audiologist AppointmentsReagan was two weeks old at first appointmentShe was too young for most testsTried twice to get ABR completed while sleepingWaited for Reagan to reach 10 lbs.Sedated ABR September 13, 2000No response on ABR test
Accepting the NewsMisunderstood results as we left the officeInitially asked the audiologist what we should do about services and got very little advice; handed a pamphlet about our county Infant Toddler programKept the results from most of our familyBegan to make calls about where to learn sign language
Second OpinionLocal AudiologistExplained first-hand experience with Hearing LossDid not re-evaluate, but answered questionsGave written information on Oral Approach
CT Scan and Ear MoldsDuring the ABR, discussion began with the audiologist about Cochlear Implant possibilitySedated for the CT scan and made molds at same timeReviewed results with local ENT and discussed how we would proceedCI Candidacy in the distance due to minimum age requirement of 18 mos
Boystown National Research HospitalClinic DayMedical examSedated ABR No responseENTHearing aid fittingEarly InterventionistGenetic interviewEye examOur local audiologist met us in Omaha and attended our appointmentDuring trip we visited the Omaha Hearing School
Hearing Aid TrialsPhonak Pico Forte AidsPaid for them out of our own pocket so as not to delay amplificationDue 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 InterventionBegan sign language classes in late SeptemberFirst service provider was Teacher of the Deaf/HH met at Father-in-laws home because of school district boundariesSecond service provider met in our home but, did not have qualifications to work with Deaf/HHInfant Toddler Network eventually contracted with the Teacher of the Deaf/HHLearned early in the process what was meant by the term advocate for our daughterTotal Communication was used because it was the strong recommendation of the service provider and amplification was not working well
Cochlear Implant CandidacyReagan remained a no response with the use of hearing aidsMuch of therapy time was spent trying to evoke a response; very disheartening and frustratingFelt 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 InstituteInsurance approval came fairly early in the process
CI SurgeryApril 26, 2001Reagan was 9 months old; the youngest CI recipient at the Midwest Ear InstituteSurgery lasted nearly four hours due to complications from chronic ear infectionsRecovery was fairly smooth
CI ActivationMay 22, 2001Expectation was just to see that she had received some stimulation from the deviceMedia Frenzy
CI HabilitationSt Joseph Institute for the Deaf Kansas CityTwice weekly appointments at their locationUtilized health insuranceContinued therapy session in our home with Teacher for the Deaf/HHDiscontinued signs during therapy sessions
Language Development and Therapy
Family AffairEveryday life became a language lessonEach member of our family was sacrificing
Reagan, age 2SJI PlaygroupDiscontinued local services and received funding from Part C for insurance deductible
Reagan, age 3SJI KCIndividual therapy reducedTwo full-days of preschool weeklyFunded entirely by school districtExperienced TransitionChurch preschoolSmall class sizeNo significant accommodation
Reagan, age 4Attends preschool at local elementary schoolServices from Teacher of the DeafFM systemResumed therapy at SJI KC after Bi-CI
Bi-lateral CIInterest began in June 2003Hearing aid trial October 2004Insurance approval December 2004Surgery/Activation February 2005
Why we are grateful for EHDIVery early in Reagans life we began to gain knowledge and prepare for decisionsThankful for early Cochlear ImplantationSignificantly helped us achieve our goal to have Reagan become an oral communicator
ConclusionOur 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.