brendan's cochlear implant story - a day by day diary
maybe 3 times today (out of hundreds) brendan seemed to turn or
look when one of us spoke to him (david, myself, or my sister pam) - he
didn't seem to startle to any loud noises at all. Only potentially new
vocalization was "aaaah-they" or "aaaah-pray" which he said right after
we took the processor off for his bath. The low-back folding travel plastic
high chair works - very cheap, ~$20. The cushy high back $200 luxery high
chair on wheels is sitting unused - as he turns his head in it & knocks
the coil right off. The stroller is still a problem, we tried a small pillow
behind his lower back and it helped a little but not enough - he still
knocked the coil off very frequently. And it didn't seem comfortable -
the pillow was too big. Maybe a smaller folded or rolled receiving blanket
will work. We didn't go anywhere in the car seat today so didn't have to
deal w/ that struggle of knocking the coil off as we did the past 2 days.
We didn't like the harness so are fiddleing w/ the waist belt & clips
and things to try to keep the processor in a safe, comfortable place. We
put the processor in a small plastic sandwich baggie & then in the
smallest adult pouch first, to keep it clean & dry as he's known to
pour milk over his head & entire body during feeding times.
Friday 7/21/00 - 2nd mapping
Today is day 2 of hearing sound - today Brendan usually doesn't react to voice, but he's still a little more fussy than usual. His levels are still quite low, so I think he's getting used to the fact that everything makes noise - he seems to react to things that don't seem that loud to me (like a distant train), and not react to things that are very loud (door slamming), so maybe it's a frequency thing. Sometimes he seems to be experimenting w/ the sound of his own voice - mostly by whining & crying, but also a little "huh huh huh". our favorite description from an older implant recipient who suddenly started hearing likened it to suddenly starting to see ghosts! must be creepy, but he's doing great w/ it all, considering
7/20/00 - The hookup
Hookup started at 1pm. Today is 1 year to the date that we got the official diagnosis that Brendan had a profound hearing loss. As for the hookup of the implant - it works! we turned it on, raised the sound levels gradually, then he turned towards the source of the noise - reliably, repeatably! pretty cool! then we cranked it louder until he got upset - then backed off - hence setting the threshold & comfort levels respectively (aka min & max). since then he's been quite irate, cranky, irritable, and very clingy - so we're keeping it low and will gradually increase it. so glad all his falling on his head didn't knock that wire loose, like I suspected :-) Brendan wore his processor until bedtime ~8pm.
6/15/00 - brendan's first birthday - surgery started at 8am & the ordeal lasted until 6/18 2pm
brendan's surgery was a joy - 65 minutes! but recovery was hell - 3 nights in the hospital instead of 1 because of problems w/ the IV that had to stay in for 4 days for precautionary treatment measures for von willebrands (a clotting disorder that runs in the family) - they tried to re-insert the IV 4 times that first night - just awful. but brendan was totally fine - never even wanted pain medication - when they weren't holding him down & sticking him, he was laughing & dancing & trying to eat the crib. he slept well in the hospital, as compared to david & I on the vinyl bench. then we tried to keep him from banging his head for a week - after that we gave up & let him resume trying to sit, stand, crawl, walk, etc.
~10/99-2/00
soundbooth tests & SSEP find no measurable hearing in either ear up to 125 dB
8/99-10/99
do research, decide on oral approach, try county program, enroll at peninsula oral
7/20/99
ABR confirms profound hearing loss 85-90 dB in right ear, worse than 100 in left.
~6/30 - 7/5-ish - 2 weeks later
Brendan doesn't pass 3rd screening - we go to the audiology clinic for this and wait until he falls asleep long enough for the test. We try an ABR (Autocoustic Brainstem Response) but Brendan doesn't want to stay asleep long enough for this - all 3 hours, so we give up half way through.
6/17/99
Brendan doesn't pass 2nd screening in the hospital. OAE again.
6/16/99
Brendan doesn't pass hearing screening in the hospital. - OAE - Otoacoustic Emissions test.
6/15/99
brendan is born