so come with me, where dreams are born, and time is never planned. Â just think of happy things, and your heart will fly on wings, forever, in never, never land.- peter pan
last week, i was contacted by kiele's cochlear implant company, asking me if i would be interested in sharing kiele's story with the company. i didn't look at my calendar. i didn't think about it for a second. i jumped at the opportunity.
of course, i'd be honored to, i told gabriele.
so tomorrow, i present kiele's [hearing loss/cochlear implant] story to advanced bionics. an hour long presentation, presented to both their CA facilities, sylmar and valencia. it's such an amazing opportunity. an opportunity to share--our story, the challenges, kiele's successes and my appreciation. it truly has been such a journey; i get teary just thinking about it. and i am grateful beyond words for this gift that kiele has been given--this gift to hear again, after a progressive hearing loss.
while preparing for the presentation, i was going through old documents and found this one that i had written in 2003--a synopsis of kiele's hearing loss journey:
Kiele is six years old and completely oral. She was diagnosed with a hearing loss at age three, although most likely present at birth. At four months old, I thought Kiele was deaf (not responding to sounds). She had an ABR done, which she failed but they said it was b/c she was not completely asleep. She soon began to respond to sounds and soon the potential for hearing loss was forgotten. At age three, one of the pediatric nurse practitioners that I worked with (I'm an RN) asked me if I thought K was speaking OK. I told her that I thought so, she was meeting all the landmarks, etc. although I had noticed that she dropped end consanants (milk was "mew", cat was "ca"). The PNP referred us for a speech eval just to make sure. Kiele passed the speech eval, the SLP said that yes, she was dropping end consanants but he thought she would speak them with a little more time. Next came the audiogram as part of the speech eval, which she failed and failed again and failed again. We were immediately referred to the AZ school for deaf/blind, where she got reassessed (and failed) and then got loaner hearing aids. Kiele's hearing loss is a sensorineural hearing loss (moderate sharply sloping to profound), which has rapidly progressed since initial diagnosis. Although we do not know for sure why Kiele is hearing impaired, our thought is that it might be due to primary CMV infection while pregnant with her...no way of knowing for sure b/c she appeared completly healthy at birth (not tested for CMV...no idea). Based on Kiele's audiogram, she has been determined to be a "borderline candidate" due to the fact that she is hanging on to some low pitched hearing (at the 250 and 500 frequencies, she is at 50 and 60 dB...the rest of the audiogram is at severe and profound thresholds). They are putting Kiele through the entire candidacy program to determine if they will implant her or not. Kiele loses about 10 dB of hearing at one or two frequencies every couple months...that seems to be the trend. Three years ago, Kiele's best hearing was at 20 dB and worst at 70 dB...now best is 50 dB and worst is 110 dB.
Kiele began with digital hearing aids and did well with them until about a year ago, at which time she was not getting any benefit from them with the high-pitched sounds. She now wears AVRs, which use frequency transposition. She actually does quite well with them considering her hearing loss. She also is very good at reading lips and "putting the puzzles together".
The thing that is difficult for me is that it seems that in a sense Kiele gets punished for being so intelligent and doing so well with her struggling, so she is forced to continue to struggle when the technology is there that would allow her to excel and not to struggle. So many things are difficult for her in every day life but she adapts and struggles through them so well. They look at her audiogram, which is done in a completely quiet sound booth, and they note that Kiele is doing so well with her aids. Well, they don't see her at school, not being able to hear her teacher or peers at times and having to rely on cues from peers. They don't see her playing with other children and not hearing them, only being able to focus on one friend and often not wanting to play when there is a group. They don't see her watching television and not know what is going on. It is things like this that frustrate me so much. Yes, Kiele is holding her own with her aids; however, how much better could/would Kiele do with a CI!!!! It breaks my heart that I have to sit back, watch her struggle, and wait for her to lose a tad bit more hearing. Academically, this is the prime time in Kiele's life and even though she is smart enough to probably breeze through it, b/c of her hearing loss, she has to struggle through it. We have made the decision to put K in a Deaf/HOH program (19 children, preK through 5th grade, in the program) for the first grade b/c she is missing too much in the mainstreamed program. I am very wishy-washy about this decision b/c they are ASL (Kiele is completely oral) and so now there will be an additional learning focus (ASL), when there are already so many things a first grader has to learn/master. Additionally, I am hoping that they start a reading group as they said they would b/c Kiele needs to learn to read like a hearing child would vs. how a deaf child would learn to read. They promised this same thing last year but did not follow through. If Kiele was to be implanted, I could easily keep her in the mainstreamed program.
it's very emotional for me to read the above words, as it was such a tough time. a time where kiele having a cochlear implant was only a dream of mine.
never stop dreaming. never stop believing.