Happy National CI Day!
Let's celebrate #NationalCochlearImplantDay with a trip down Ellie's hearing journey and provide you a little info about her hearing devices and life with a CI kid.
From the very beginning... Ellie was identified as having a potential hearing loss at 2 days old, while we were still in the hospital, as part of the Newborn Hearing Screening.
She had an ABR (auditory brainstem response) done just before she turned 1 month.
The next day, we learned she had a bilateral sensorineural profound loss - hearing loss is measured on a spectrum and Ellie is profoundly deaf in both ears.
At 8 weeks, we started working with Early Intervention (EI) and the Massachusetts Commission for the Deaf and Hard of Hearing (MCDHH) and went for a repeat ABR at Boston Children's Hospital, where we met with audiology, otolaryngology, surgery, and the Genetics Team.
At 10 weeks, she had an MRI to look at the anatomy of her ears and determine if she might be a candidate for cochlear implants.
At 16 weeks, we began the Family Sign Language Program, offered through MCDHH and Gallaudet University, to learn ASL (American Sign Language). Because of COVID, our whole family is able to join us for these classes on Zoom every week.
Between 3 and 9 months, Ellie did additional hearing testing, vestibular (balance) testing, ophthalmology testing, and genetic testing. She wore hearing aids and was fitted for new ones every month as her little ears grew.
At 9.5 months, Ellie had bilateral cochlear implant surgery. It was 7 hours under anesthesia and we stayed one night in the hospital; she was back to jumping and blowing raspberries within 48 hours. Truly amazing.
During the surgery, a receiver was implanted on Ellie's skull (it sits under the skin). It attaches to an electrode that was implanted in her cochlea (inner ear). The electrode stimulates the hearing nerve to relay signals to the brain, which produce hearing sensations.
At 10.5 months, her cochlear implants were activated. She will wear a processor on her head - it looks like a hearing aid - but attaches by magnet to the receiver on her skull. (This video is from her second mapping appointment.)
Regardless of her devices, Ellie will always be Deaf. Her CIs give her access to sound, and will give her access to spoken language as her hearing develops, but she doesn't wear her processors all the time. We take them off to sleep, take baths, and sometimes to eat so that she doesn't get sweet potatoes in the microphones. They fall off if she rolls around or jumps too high in her bouncer. They are magnets, so they attach to her high chair and the refrigerator. Sometimes we have to guess where they might have ended up if she throws them. And she's a year old, so everything is a game. She also likes to take them off and eat them... as do her tiny friends.
She will never have "normal hearing" like us, but over time, her brain will begin to understand sound in the way we understand it. She likes wearing her processors and tends to talk and sing and scream more when she has them on. We will talk a lot about Ellie's "hearing age," as her speech and language sounds develop, and will gauge her progress as the age that correlates with her activation date: December 14, 2021.
At just over a year (2.5 months hearing), Ellie has lots of signs and gestures - more, all done, milk, up, happy (or please? still tbd on what it means)... she points, waves, claps with her hands together, and does the deaf clap when she's really excited. I think she's working on signing "water" this week. She has so many expressions and ways of expressing herself; there is no secret to how she's feeling at any moment.
We - me, Chris, our supportive families, our wonderful friends, our amazing nanny - talk and sign with her all day long, so that she is immersed in language and learning in both ASL and English. We take ASL class every week with a Deaf tutor to increase our vocabulary and our understanding of Deaf culture. We have lots of services every week with her Early Intervention specialist, who is a TOD (Teacher of the Deaf), SLP (speech language pathologist), PT (physical therapist), and TOD from the Beverly School for the Deaf. We go for monthly mapping appointments with her audiologist to make adjustments to the programs for her implants, constantly tweaking to assure she's getting the most access to speech sounds and helping to better identify specific sounds.
We have a long road ahead in Ellie's hearing journey. I say this to help break the stereotype that activation is this magical moment that you see in some of the YouTube clips where a child's eyes light up and everyone cries. Activation Day was very exciting and was the end of one long road but really the beginning of an even longer one. The more exciting moments for us have been seeing her turn when one of our dogs barks or catching her find enjoyment in a toy that makes noise, when she's never picked it up before. The best moment is when she signs something for the first time and is so proud of herself.
I'm so ridiculously proud of my kid and hope to keep sharing her journey with you all. #NationalCochlearImplantDay #CIKids #DeafKidsRock