Monday, May 25, 2009

Mapping #5 and Updates Courtesy of the Truly Fab Facebook Status

So funny that when things seem to be progressing the most quickly is also when I have the least amount of time to devote to blogging. I have so much to catch up on since I haven't been able to blog much recently, and yet, the cochlear implant awaits no blog. The progress this little computer in my head and I are making together has made everyday an exciting experience lately.

I will start off by saying that my fourth mapping (mentioned in my last post) that was supposed to sustain me at least seven weeks was just not cutting it a week later. I had maxed it out and was completely ready to take on an even bigger range of sound. I made an appointment on May 7th, my fortieth birthday (yes, yes, 40 is the new 30 and all that jazz...), for another session with my audiologist. Michelle is just the greatest at squeezing me in spur of the moment and allowing me advance at my own pace instead of going by the book. I adore her for that, and I'm sure I would not have made nearly as much progress without all the time she has put in creating new maps for me and here I was just five weeks out ready for my fifth mapping!

My mapping session was the highlight of my birthday. (Thank you, Michelle!) James was on his fifth day in the ICU at the time, and getting a new tune up with TONS of power was a great gift on an otherwise pretty gloomy day. Even taking Aidan to the park later that evening to visit the ducks was a bust as he was exhausted from daycare and missing his daddy. He threw a temper tantrum on the grass worthy of an Oscar before collapsing in my arms crying and asking for his dad. Whew. Some days this mom business just isn't a walk in the park (pun intended.)

So, Michelle increased my range of sound almost to the point of distortion, but she stopped short of that, of course. I had pushed her for something I could work my way up to in the next few weeks, and she was worried that I would leave with something too loud for comfort. However, every time I've left her office with something that seemed loud, my brain would adjust to it quickly, so I had no fear of the great big booming world. My tolerance for louder programs increases even more when I put my hearing aid on my left ear, and when we work on the mappings, I don't put it on until we are wrapping up.

I was given four new programs on my processor. They were for using everyday, filtering out background noise, focusing directly on a speaker (anything or anyone I can look at directly), or listening to music. This would be more for music in a very quiet environment or with an Ipod. Michelle also said it would be good for listening to nature and birds.

Each program has nine different volume levels. I've maxed this sucker out....again....(level nine, baby!) and am trying to refrain from going back for a new mapping right away to give Michelle a little space to actually see her other clients. The only thing is that now that I'm at maximum level and comfortable with it, I'm hearing a lot of background static that is making me batty. It's like radio static on a station that is just barely out of range.

One area of improvement has been a surprise. Music is getting better all the time, even though some people seem to prefer the music they heard prior to the CI with their hearing aids. The high pitched notes on the Faith Hill song I always listen to for comparison after mappings and as the weeks pass are actually the sounds of a guitar. It makes so much sense now.

Music used to have depth for me with my hearing aids, but it was a one dimensional depth. I couldn't isolate different sounds as I'm starting to do now. I could usually hear very basically how the tune sounded, but I couldn't pick out any of the details, especially those sounds in the higher frequencies, and I had no idea how much I was missing.

I asked James recently about different sounds I was hearing in the background when we were in the car, and he'd tell me what he thought it was. Once it was a brass instrument, another time I heard something distinct it was a piano, and another time it was a guitar. Voice clarity, at least, is as good as it was with both hearing aids with a little more oomph added now (meaning if I know a song and have memorized the words, I can usually follow if the voice is easy to distinguish from the music), but I know that comprehension and clarity will probably be my biggest hurdle to cross eventually whether it's by spoken word or song.

I started watching this season of American Idol with two hearing aids, then I only had one after surgery, and by the finale I was rocking out with a screaming toddler and a cochlear implant. I was able to appreciate the voices of both finalists a little more fully by the finale than I would have a few months ago. One guy was a full blast glam rocker/power ballad singer and the other was the simple yet creative song writer/singer usually sporting a guitar. Both had God given talents that I could enjoy with my brand new God given bionic hearing.

I would have been happy with either guy winning based on talent alone. The sad part was the viewers and the media who tried to turn it into a culture war with neither fan base looking too hot, but that's a blog post for another day. (I will say that the grown up friendship between Adam Lambert and Kris Allen AND their families speaks volumes in itself about the respect those two guys and their families have for each other. *heart melting*)

One thought that keeps crossing my mind lately is that I have not a clue how hearing people can handle so much noise commotion at one time. However, I keep thinking about what if I were blind and not deaf? What if I was able to see by some miracle? The kaleidoscope of the summer landscape in our neighborhood, while wonderful to see for the first time, would have to be incredibly overwhelming to take in all at once. I can label a tree, a cloud, birds, a garbage truck, a child on a bicycle, a wagon in the yard, and a rooftop on a house, but if I had never truly seen before what would I make of all of that? Would it all just jumble together visually as sounds seem to do for me now? That is how I try to view my situation and keep my perspective when I feel a bit impatient. I cannot fully understand how it is to process this maddening world of sounds just yet, but I learn something new everyday. I can only imagine a blind person learning to see would also have to spend time deciphering that information just like I'm trying to do now with a cochlear implant.

So here's my idea of updating my progress since my last mapping on my birthday... I'm copying the relevant Facebook status messages from my profile since the last tune up. :-D Clever, eh? On that note thank God for Facebook, or I wouldn't know what I was thinking at 11:00 pm three months ago. Gosh, how have we lived without this glorious technology all these years? *insert slight sarcasm and a big smile*

....and now for the status updates....

Michelle talked to her extremely in denial hard-of-hearing big brother on the phone last night without an interpreter or captions and didn't do any worse than he did... Okay, that's not saying much... but a month later we've gone from bats n bells in the belfry to talking on the phone...kind of... Score one for the bionic ear. Boo for tuning me in to two year old tantrums in high definition though. May 12 at 11:40pm

This was a major triumph for me! The conversation with Dean was pretty simple, but it was great practice for me. I was able to do this by turning my processor to the telephone switch and maxing out the volume.

I also had a couple of other phone conversations with my "adopted" mom in Tennessee. She's very soft spoken but is clear and enunciates well. She was excited we were having the conversation sans interpreter and captions. I still use my video phone, with interpreter, for most calls because the clarity isn't quite there and even having a simple conversation requires a lot of concentration at this point, but I'll get there!

I think the biggest issue with speech is probably understanding consonants. Vowels, I can pick up pretty well, and my brain usually works extra hard taking those vowels and tying them in with the few consonants I might catch, the sentence structure/number of syllables, to the topic at hand to piece it all together. That requires a lot of tiring brain work, but I haven't had a real conversation on the phone like these calls in a long long time. It was just awesome to even be on the phone and comprehend anything at all, much less with 10-20 minute conversations.

Michelle is quite amused by her two year old waving to her from his high chair saying, "hi baby!"May 14 at 9:55pm

Mostly posting this because the kid is a hoot! However, I didn't have to ask my husband what he said because I understood him myself. I did clarify this statement with James though because I keep thinking I misunderstood something Aidan said. "Did he really say 'hi babe'?!" I have a hard time believing that I understand the odd little comments a two year old will make. Funny thing?? I seem to understand whatever James understands Aidan to say. It seems almost any time I ask James to repeat something Aidan just said now, he usually doesn't understand it either!!! Amazing? I think so. Thank you, God for my bionic ear and my silly child!

Michelle: Oh, you chirpy little birds are so loud.... I haven't heard you since I was a kid... and never in high def like this... Thanks for stopping by today... even though I have a feeling you've been there for a long time. :-P May 15 at 6:20pm

This was a super duper red letter day for me! Seriously! We have birds... lots and lots of birds in our 'hood. Who knew??? Not me! I cannot get enough of listening to the beautiful music they make. If the television is off and no one is talking, I can even hear them in my living room as I sit on the couch. Wow! Truly this is a gift.

Granny and I used to listen to birds on her back porch when I was much younger. I'd forgotten what it was like to hear their singing, and even as a child I didn't hear them quite this well, but my grandmother would tell me what to listen for as we sat out there quietly looking up towards the trees and the sky. Now I am telling my son to listen for the birds when we are outside which kind of chokes me up a bit. *sigh*

I slide my magnet off and on when I sit outside to remind myself not to take this for granted and to remember just a few weeks ago I would not have been able to enjoy this. With just my hearing aid on, all I can hear outside is the low buzz of the air conditioner, and the quiet sound of my husband's voice. He's a loud guy, and we have loud birds. I love my new outside world.

Michelle's startling hearing moment of the day: hubby's cell phone... across the house.... while the TV was on... I couldn't hear that thing ring if I sat on top of it two months ago. Dude! :-P May 17 at 12:22am

Oh my gosh... oh my gosh.... OH. MY. GOSH! James' cell phone has a cute little ring tone. I was on the computer one night, and over the sounds from the television in another room, I heard very very clearly his phone ringing as if it were in the room right beside me. Holy cow! Un-freakin'-believable! I couldn't hear that thing ring...ever.... before! I always thought it must be the quietest ring that required super duper listening skills. Not at all. It's quite loud. Seriously, this is my husband... super duper listening skills??? *said affectionately*

Michelle's bionic moment of the day: hearing something from the living room while the TV was on... hmmm... is it??? *venturing to bathroom to look* ... why yes, the sink water is running while hubby is brushing his teeth. Can I get a woot? :-D May 17 at 9:02pm

This was another shocking moment for me. Running sink water?? Over the TV? I'm the chick that can leave the water running right in front of my face and not have a clue. Of course I can't blame that completely on being deaf, since I know I can just be scatterbrained period. This was just too cool. Had lots of cheesy woots from friends on FB!

A runner up moment of the day that didn't make my status report but I included in the comment section reads: ".... listening to different bird calls in the back yard and actually being able to find two of the birds I was listening to on my fence "talking" to each other... I knew it was them because I could beak read them... seriously... ;-)" I do sometimes try to locate the birds I hear now if they are visible and not hidden in the trees.

Michelle has spent an hour frantically looking for her lost CI processor only to find it ..*whistling* (now, don't tell anybody this...) ... behind her ear... sad... just sad... May 18 at 11:00am

What kind of a ding dong am I? Like I said... nothing to do with being deaf... just naturally absent minded on occasion. I had this sucker on... magnet and all and the only reason I "found" it is because I finally stopped searching and stood in the living room puzzled, scratching my head...thus locating the darned thing. It wasn't turned on though if that makes me any less of a ding dong! ;-)

Michelle had lunch on the patio of Joe's Crabshack.... listened to the music on the speakers.... placed orders for hubby and herself as she carried on conversation with waiter with no repetition necessary.... (and did I mention the restaurant faces the freeway???) Today's bionic moment is brought to you by the makers of Nucleus Freedom... :-D May 19 at 3:26pm

Now THIS is what it's all about, people! Multi-tasking listening skills sorting themselves out... so, so, so fabulously cool! Yes, I had to lipread the waiter as I placed the order, but I could hear him clearly over the noise of the freeway and music as well. I could hear the music clearly separate from the traffic. I carried on a conversation with my husband without strain in spite of the music and traffic. It was really awesome to have him home from the hospital after a long stay and much healthier than he had been in months while enjoying a nice grown up lunch outside and knowing what was going on around me. At this point, I'd just been activated about 6 weeks.

Michelle's bionic moment of the day.... (you've been sitting on the edge of your seat waiting for one, right?! ;-) ....hearing the little Thomas the Train chugging in place on the couch wasting a battery over the sound of Mickey Mouse Clubhouse on TV... (had to turn the TV sound off to actually locate the little bugger though...) Thomas lives to roam off tracks around the big world of our living room another day. Fri 8:18pm (May 22)

Oh the things I can hear now and all the batteries it may save on toys in the future hopefully! I can actually relate to the parents that have to listen to the racket of multiple toys going haywire simultaneously now. I know every bionic moment won't be puppy dogs, rainbows, and Audubon musicals, and that's okay!

My friend, Melissa, asked me if there is anything I didn't like to hear at this point... my response: "LOL!!!!!!!!!! Ummm.. quite a few! let's start with the screaming demon... (2 year old piercing tantrums hurt).... and all the static coming in from the craziest stuff like the refrigerator humming... only it sounds like static when I'm not next to it and I can hear it over music or the TV... (I've turned off the TV and followed the sound to the kitchen and the static turns into the fridge or dishwasher humming) or when we go outside and the bird symphony is joined by the AC... there was a cricket I was trying to hear but my neighbor's AC clicked on and drowned that out (also sounds like static)... oh... and when paper is crinkled or packages or opened by others when I'm in the car, by the TV (I promise I don't watch that much TV.. LOL!).. whoa... it is loud and sounds like it's tearing right in my ear (like James opening ice cream cones or bags of popcorn)... Phoebe (our cat) was playing with a plastic bag next to the computer and that was very crispy loud and startling...")

I'll end with this moment from yesterday, though I only heard about it second hand. My guys humor me. Life with a two year old at it's finest:

Michelle's laugh of the day.... When Aidan's daddy came home from the store he opened a bag and asked Aidan if he wanted some candy. Aidan's response? "Money? Two dollars?" (no, kid... it's free... you're two... where do you come up with this stuff??) 10:39pm


  1. Happy belated birthday! ;-)

    How do you like the music and background programs? I have the background program but am still trying to get used to it. I haven't asked for the music program yet. Most of my friends don't even use any of those programs.

    Music has been changing for me also. I am able to pick out when instruments are playing but I usually have no idea what they are (aside from guitars and drums). I've also started to enjoy music that has a lot less beats to it also. I can pick out people's voices and while I can't follow the lyrics unless it's a song I know well and have memorized the lyrics......I do enjoy listening to just the quality of the voice itself and the tones...etc.

    Birds! Oy! We have tons of them out in the backyard. I never realized how different they sound. One day I was outside and asked what I was usual it took hearing people a while to figure it was birds. The next day I asked the same thing and again it was birds, however, they were different birds so it sounded differently. So cool!

    So interesting how our brain slowly weeds and separates sounds out.

  2. I forgot what I else I was going to write, but sounds like you're doing very well! The water running made me laugh, I've been known to leave it on now and then too... but here's a page that helps you identify the different birds :)

  3. I haven't heard birds in several years now, are they supposed to have a shrill whistling sound like "chirp, chirp, chirp?" How well could you hear birds with your HAs, what type were they and did they have transposition(a program that shifts the high frequencies downwards) My Phonak HAs have transposition/soundrecover but it's not enabled so those HAs will need to be reprogrammed for that. Do you have any experience with that?

    You mentioned that your CI audie is reprogramming your CI with a new map to make it louder. What db range is she aiming for and what's the best possible threshold one can have with CI? This is something I need to learn more about. It appears that some people get 40 or 50db with their CIs while others get 25db or even better. How can one determine if CI will be louder for a particular person?

    I have a piano thud test on my blog, what's the highest note you hear with your HA and with your CI? I can't seem to hear above around 1000Hz with my HA, should I be able to? By the way what instant messenger do you have? Thanks again for your blog updates.

  4. Kelly,
    I mostly use the everyday program... occasionally the background.... but not really finding a need for the other two right now. Your description of music pretty much matches my experience at the moment too! The birds were startling to me. I wonder why I didn't recognize/hear them until just recently, but when I did it was like they just popped up out of no where. Day one they were all the same sounds and now they just sound so beautiful and so different! Thanks for the link, Sara. I would love to be able to recognize what birds I'm hearing!

    DD... you have a lot of technical questions I'm not sure I can answer for you. There is no set db goal for me to reach, and I don't get a new hearing test at every mapping... My brain just knows when it's ready to adjust to more sound, and there's quite a few mappings the first year because the brain is constantly adjusting. If you ever get a CI you'll understand that more fully than I can ever explain. My goals have nothing to do with numbers on a paper but everything to do with understanding my child, having a phone conversation, recognizing sounds in nature, enjoying music more fully, being more independent.... I do love seeing progress on paper when I am tested. It's exciting, but I get more excited when I hear something out of the blue I've never heard before. It's like.. what's that? Where did that come from? Oh my gosh... look at what I just heard!

    As far as the birds... they are breath taking to hear to me... They are as different and as similar as a group of musical instruments. I hope you get the chance to hear them one day. I'm interested in whether your hearing aids will allow you to hear them and how differently they would sound in a lower pitch?

    I will tell you that my audiogram only goes to 6000 Hz.. not sure why... and I was at 15 db at 6000 with CI, 80 db aided (two years ago), and off the charts unaided (so 120, I suppose?) There's only 5 db difference between aided and unaided at 250 db but as the frequencies increase the amount of hearing I've gained increases... maybe that will help you? Like I said, I'm really more tuned it to the experience than the numbers, but I know you are fascinated with comparing data. If you want more numbers then maybe looking at Sara's charts is more what you would be interested in since she has compiled a lot of data???

  5. Happy belated birthday! 40 and fabulous!

    Glad to hear your making progress with your new CI. Good for you. What your hearing sounds like heaven!

  6. Hi Michelle! I enjoyed your facebook updates you copied over and elaborated upon. Great idea! You know, I'm kind of envious that you can turn off your hearing. That would come in handy at night when my husband lies in bed watching television and I just want to go to sleep in silence. :)


  7. Marnie, I've decided that being able to turn it all off is now a super power and can be definitely used for the better of mankind... (a happy mama/a happy wife = a happy house! :-) However, that said,if my husband is laying in bed watching tv when I'm "tuned out" and trying to sleep, I'm on hyper-mode sensitivity alert with movement and light. He still can't win. :)