How EHDI Changed Our Lives

1. How EHDI Changed Our Lives The Emerson Family Story

2. Introduction • Tony and Allison Emerson • Reagan, age 4 • Siblings: Katie, age 7 Sydney, age 5 Andrew, age 8 mos.

3. Reagan’s Birth • June 28, 2000 • Full-term pregnancy, no complications with delivery • First child in our family to have hearing screen

4. 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

5. 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

6. 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

7. Second Opinion • Local Audiologist • Explained first-hand experience with Hearing Loss • Did not re-evaluate, but answered questions • Gave written information on Oral Approach

8. 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

9. 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

10. 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.

11. 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

12. 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

13. 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

14. CI Activation • May 22, 2001 • Expectation was just to see that she had received some stimulation from the device • Media Frenzy

15. 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

16. Language Development and Therapy Family Affair • Everyday life became a language lesson • Each member of our family was sacrificing

17. Reagan, age 2 • SJI Playgroup • Discontinued local services and received funding from Part C for insurance deductible

18. 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

19. 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

20. Bi-lateral CI • Interest began in June 2003 • Hearing aid trial October 2004 • Insurance approval December 2004 • Surgery/Activation February 2005

21. 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

22. 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.