July 2008

Ryan was a micro-preemie (1 lb., 6.2 oz., born at 26 weeks) born in 1997. He passed an ABR while in the neonatal ICU at four months of age, but by six months, we had begun to question if he heard loud noises at all. Our pediatrician wasn't too worried because Ryan was babbling and cooing, so it wasn't until age 1 that we did a follow-up ABR.The news was crushing--he was profoundly deaf. One month later, he was fitted with analog hearing aids. Within weeks, he began to show awareness to sound, which thrilled our hearts!  We began speech therapy, sometimes three times a week, non-stop year-round. During his preschool years, we used total communication (signing and speaking), and he developed alimited spoken vocabulary and an extensive sign vocabulary.We were quite resistant to cochlear implants because we didn't want to do anything invasive and permanent, so we tried practically every assistive listening device on the market to boost his access to sound. But by age4, we realized no external technology could give him the added decibels he needed to achieve independence. We wanted him to have conversations with his peers without an interpreter present. We wanted him to go to a doctor as an adult without an interpreter along or without the need to communicate by jotting notes back and forth. Simply put, we wanted him to hear more so he could speak more fluently and hear more completely. We believed his horizons would be less limited, and he wouldn't have to work so hard to be part of mainstream life.

At age 5, he received his first Advanced Bionics implant (in July 2003). We chose to implant his right ear because that was his worse ear, thereby saving the better ear for continued use with the hearing aid. That way, if the implant didn't do all we hoped for, he would still have his better ear and a hearing aid (though his better ear was still profoundly deaf). A month after surgery, his implant was activated, and he showed a typical response to sound--nothing overly remarkable, but clearly he was hearing with his implant. He was one of the first children to use the Auria and Hi-Res software. But after just six months of experiencing sound with his 'new ear,' we forgot the other (unimplanted) ear was ever better!  Ryan's hearing and speech progression had soared far beyond our expectations. His spoken vocabulary exploded. There was a period of a few months where we still signed while we spoke, just to help him transition to a more auditory life and to help him relearn the sounds of words by connecting them to the signs he associated them with, but slowly and surely, we were able to decrease our signing and move forward with only oral communication. When he started kindergarten two months after surgery, we had an interpreter present, but we were told he was paying less and less attention to her and more attention to listening to the teacher.

Less than one year after his first CI surgery, we were back at the hospital to have his other ear implanted. The benefits of bilateral implants had become obvious, and our CI team (surgeon, therapist, audiologist) explained that children especially do well when they 'go bilateral' early. By implanting his second ear within a year of his first surgery, there would be very little difference in the 'hearing age'of his two ears. The second surgery went even better (easier and less stressful on us) than the first. We knew what to expect, we knew Ryan would recover extremely quickly after surgery, and we anticipated an easy transition to listening with both ears. But we never dreamed the transition would be practically seamless. Just 24 hours after activation, Ryan went to his weekly Auditory-Verbal therapy session, and in some exercises usinghis new implant only, he heard and repeated the word 'school bus.' Wow! Within six months, testing showed his newly implanted earhad reached the same level of auditory comprehension as the previously implanted ear. Plus, implant #2 somehow seemed to 'wake up' Ryan's interest in music. He wanted to listen to music every time we got in the car. He began to correctly identify one artist's music as compared to another artist. He could not decode most of the lyrics, but he could hear the differences in rhythm, tone, style.

Because of his premature birth and delayed development issues, we chose to repeat kindergarten to give him more time to learn to listen, understand language, and develop academic confidence in basic subjects. It was a sanity-saving decision! In this second year of kindergarten, he quickly moved away from needing an interpreter at all. Now, he has just finished third grade and has been mainstreamed throughout, requiring additional help in math mostly. He wears a wireless FM system with his CIs, and that helps him get the best possible listening environment in a sometimes noisy classroom! In January 2008, he upgraded his Auria processors to Harmonys with the new software, too. He made mostly A's and B's all year long. One boy in his class told me, 'Ryan is the only deaf kid I know who can talk!' Another boy commented on what a good reader Ryan is when the children read aloud to each other.

But in our opinion, the greatest benefit of all is how his Advanced Bionics 'ears' have given us the best of both worlds. We can still sign to him when we want to (sometimes it's fun to sign and know no one around you has a clue what you're saying!), but our favorite things are talking to Ryan in the dark at bedtime and talking to him on the phone. At bedtime with the lights out, he will say, 'Mommy, tell me about when you were a little girl.' So I'll dig back in my memory bank and find some story he's never heard before--all in the dark and only with spoken words. It reminds me how incredibly blessed we are to live at a time when technology allows deaf children to hear.