Our son was diagnosed with a severe hearing
loss at 1 1/2, though we suspected a problem by the time he was 6 months old. Ever since
then we've watched our son's hearing slowly deteriorate. This was particularly frustrating
since being able to hear was something he has always taken delight in, from the first
moment he put on hearing aids. My husband and I knew that if our son was able to continue
hearing, his only chance was a Cochlear Implant. Getting him considered a candidate for an
Implant proved to be difficult. Twice he was evaluated and twice we walked away with the
news that our son did too well with what little hearing he had left, and yet the
audiologist for one of the teams told us in her next breath that our son was missing too
much of conversational speech and we should teach him to carry around a pad of paper and
pencil and ask people to communicate to him with that.
The third time our son was evaluated the
surgeon told us that he would implant our son. He is now 12. During those years between
his first and last evaluation, he talked to people with CI's and asked them questions so
when he was finally accepted for an implant he had a very realistic idea of what to
expect. He doesn't expect to have perfect, or normal hearing. What he expects for, and
hopes for is to hear better, to have the hearing he used to when he was younger.
Surgery
Surgery took place on April 7th, 1999, a
Wednesday. My son's biggest concern was getting an IV. He spoke to the nurse and the
anesthesiologist about it and they agreed to hold off on starting the IV till after he was
in the Operating Room. They would give him gas first, before they started the IV. He spent
most of the time in the holding area playing on his Game Boy. The surgery took about 3 1/2
hours. I was allowed to go into the recovery room with him when he woke up. They took him
up to his room and he spent the time there drifting in and out of sleep. He was pretty
happy when he found out his TV had captioning. He was out of the hospital Thursday evening
and by Monday he was back in school.
Many have questions about the surgical
site, so I'll mention a few of my observations about it. The incision runs along the
natural fold behind his ear and from the top it extends towards the back of his head by
about 4 inches or so. They didn't put stitches in the external layer of the skin, but
instead used something I've heard of but never seen before,
Surgical
Glue. The incision was then covered with Steri-Strips. Since the initial bandage was
removed he has to wear something called a Glasscock Ear Dressing
until his hook-up. This is supposed to keep pressure on the site to help reduce swelling.
The incision appears to be healing well. When we looked at it after the first few days
there was hardly any noticeable swelling and very little redness around the incision. The
only way I could tell where the device sits is by the pen outline the surgeon drew on my
son's scalp. There is no visible bump, you can't even feel it when you run your finger
over his scalp. (He implant is one that has a thin profile).
Another thing folks ask questions about is
pain. The only time our son really mentioned that he was in pain was when he woke up in
the recovery room. Since then, if something bothers him he mentioned it after it no longer
bothers him, so I suspect it wasn't very painful (he's the type who wants some medicine if
he even stubs his toe). For example, 2 days after surgery my son said his teeth no longer
hurt when he chewed. He also told me that one side of his mouth had no taste, but if I ask
him about it now he eats something then tells me it has a little bit of no taste. His
biggest complaint was during days 4-7 post-surgery it itched!
He's very proud of his implant. When he
meets someone he hasn't seen since the surgery he tells them he got his implant, when his
hook-up will be (May 17th), and asks me to remove the dressing so he can show them the
incision.
Three weeks after the surgery I thought
there might be something wrong. Despite the fact that we washed the straps on the Ear
Dressing and changed the gauze inside it daily, for the last few days it really smelled
bad by the end of the day. The surgeon said he wanted to look at it so I took him in. It
was a relief when he told us everything looked fine and that it was probably due to the
same thing that causes socks to be smelly on pre-teen boys. He said it looked so good he
didn't have to wear the dressing any more. Then as he left the room he asked me to wait
for a moment till he came back. When he returned he was carrying a rather large box. As he
handed it to me he said that he didn't see any reason why we couldn't take this to the
lady who would be doing his mapping (his mapping is being done at his school) and ask her
to schedule hook-up at her earliest convenience. This was on a Thursday. We scheduled
hook-up for 4 days later, Monday the 3rd of May, 14 days earlier than we had expected. My
son was elated.
I think because he kept insisting, in his
excitement, that the levels be turned up higher, his comfort level was set too high and he
was being over stimulated. After a while he was saying it was too much. Before he woke up
the next morning I reset the volume level from 9 to 7. When he put it on this
morning he said it was much better. As he was getting ready for school, he thought there
was something wrong because there was a strange buzzing. Then he realized that his
electric toothbrush was making the buzzing sound, something he had never realized before.
We talked about how lots of things made sound and he just hadn't been able to hear it
before. I told him that after school we would go on a "discovery mission" and
see what new sounds he could discover. On the way to school he discovered that cars make
noise when they go by, car engines make noise, and that windshield wipers make noise. He
was pretty excited by each of his discoveries and even made me write them down so we can
make a list. As we neared his school I pointed out to him that his voice level had been
perfect all morning. Not once did I have to ask him to stop shouting. I can't even
remember when the last time was I didn't have to tell him to lower his voice.
It has now been a little over a week since
our son was hooked up. It just keeps getting better and better. By about the 4th day after
hook-up he was able to leave the volume on 9 all day long. When he went for his therapy 7
days after hook-up his therapist and I both noticed his speech was beginning to clear up
and that he was using his "S" sound more frequently than before. She re-mapped
him since I said after the first one I thought the levels were too high. Our son really
likes this map. She also put him in the sound booth for a quick test. On closed set word
recognition (numbers) at 50dB, our son got 90% correct. Yesterday he was reading to me in
the car. For the last year or so I haven't been able to understand him when he reads.
Yesterday I understood every word!
As the days now turn into weeks since
hook-up, it seems like every day our son is able to use his hearing in ways he hasn't been
able to for a long time. He can match notes made by some of his musical toys when playing
around on the piano. He can understand and repeat announcements made on the PA system in a
crowded grocery store. He can hear my computer when it accesses the hard drive. He can
also overhear bits of conversations going on around him, even though they're not addressed
to him. His language seems to be improving even though he's only been hooked-up a short
time.
Today marks one month since our son's
hook-up. Yesterday I was talking on the phone to one of his aunts. Our son has never done
very well on a regular phone, but does better on his speaker phone. His aunt wanted to say
a quick "Hi" to him so I put the phone up to the mic of his implant. He hasn't
tried the phone with the implant before, and his immediate response was to start shaking
his head to tell me no, and to point towards his speakerphone (he knew that if he used his
voice his aunt would be able to hear him). Before, when he's used the phone in this
manner, he's faked understanding while I hold the phone for him, and scowled at me the
entire time. She said hello to him and you should have seen the grin that broke out on his
face, then he grabbed the phone from me, walked a few steps away in case I tried to take
the phone back, and carried on a short conversation with her, grinning from ear to ear the
whole time.
It's now been 11
weeks since hook-up. Our son can now understand my husband's speech with
only the implant and no speech-reading. With his hearing aids he's never
been able to understand my husband. This "event" certainly
caused a lot of excitement around our house!
During the last
week or so our son has shown that his speech and language comprehension
with the implant alone is now at least as good as, if not better, than it
was with his hearing aids (and he has done very well with those, at least
till his last few drops in hearing). When I ask him to give me his ear, he
sometimes turns his implanted ear towards me, instead of the ear with the
hearing aid. I think the biggest "proof" though is today after
being re-mapped, he left without putting his hearing aid on, or even
mentioning it. Since he got them 11 1/2 years ago, his hearing aids have
been his constant companions. He wouldn't even let a trusted audiologist
walk out of the room with them, unless he went along. It was over an hour
later when he realized he didn't have his hearing aid in.
Friends
that have only known us for the less than a year, and who have no previous
exposure to deaf/hard-of-hearing children now comment on the changes
they've seen in our son since he was implanted. While they're all changes
I've noticed, when others who are not focused on watching for these
changes notice them, it's a great testimony to what the cochlear implant
has done for our son..
This
afternoon our son got his ESPrit (ear level speech processor) mapped for
the first time. He was really excited about this and really loved it.
After about 1 1/2 hours though it started having intermittent problems and
shutting down. I thought it was pretty timely since just this morning I
had added some information about this to the CI-Hints
& Tips page and the Batteries
page. We're now getting to field test these ideas. Unfortunately, we're
down to the last few ideas since none of these ideas has worked for us. So
now our son is back to wearing the body processor, but I'm not
complaining. To me, anything that can give my son the hearing he now has
is a wondrous thing. ;-)
After
trying out all the suggestions, we ended up having to switch to silver
oxide batteries for the ESPrit. This does keep the unit working for about
a day and a half, but well worth it. Our son shows that he's hearing well
regardless of which speech processor he's using. Today we also got the
troubleshooting finished for hooking his FM to his implant. He can hook up
his Solaris FM system to either processor and it works well, much better
than when he was using hearing aids alone. Now he's all set for school to
start on Monday.
Here
it is September and I realize I haven't updated our son's story since
school started. The Cochlear Implant has made a tremendous difference for
him in school. Even his teachers have noticed and tell me that he's a lot
calmer, fidgets less, and pays attention in class. I can honestly say that
this is the first year that I've had teachers come up to me on their own
and give me good reports about my son's behavior and attentiveness in
class. So far, our son is the happiest he's ever been in school (and he's
always liked school). He continues to improve in therapy and is now able
to discriminate and repeat 9-10 syllable open set sentences.
It's
now the first of October and our son is currently testing out a patch cord
that will not only allow for his FM receiver to be patched into his
implant, but the FM receiver also boots to his hearing aid. He was
supposed to use the single cord at school and test the double cord here at
home, but he talked me into letting him try the double cord at school and
he likes it so much he doesn't want to go back to using the single cord at
school.
In
January (2000) we took our son for a hearing evaluation for insurance
purposes. His pure tone thresholds are coming in at 30 dB across the
frequencies. His open set word discrimination is at 84% using both the
hearing aid and implant and at 72% with the implant only. His speech
reception threshold is at 20 dB. After being hooked up for only 8 months,
he's doing very well. The audiologist who tested him (at a different
center than we normally go to) said that he's doing better than any of the
kids with implants she's tested.
I have to tell you
about something that happened on Monday. Twice I had the opportunity to
speak to our son on the phone, actually my cell phone. I was so trilled
because not only was he following the conversation, but he was able to ask
and answer questions. He called the first time and answered the second
time. What really thrilled me about the second time is he was home alone
when I called. The phone rang and the answering machine picked up. I said,
"This is Mom, please pick up the phone." and HE DID! Then he was
able to answer my questions, and answer mine.
