Patchwork Girl's Rambling Warps
Sunday, December 14, 2014
      ( 10:21 PM ) Jessica  
Lately I've been noticing more breakthroughs in what I can hear. The other day when I took my son to work, I thought I heard one of our cats meowing... I asked my son "what's that noise?" and he said "I think birds" sounded demanding almost screechy... I'm looking forward to when I can hear birds sing as opposed to screeching.

Today I heard Bean meow... but I think it was amplified because he's not feeling well. The vet says he has asthma... he was acting like maybe something was in his ear or throat. He's calm now. I thought maybe he had a stroke because he wobbles when he walks... But I heard his meow, it sounds different from the others, and yes, quieter than Pepper & her children...we'll take Bean to the vet tomorrow & hopefully she'll be able to do something for him... he's not exactly a young boy, we found him in 2006 and he was full grown then, so we're guessing he's at least 11...

I also heard a couple of warning beeps on my Naida processor & thought to myself  "huh, I wonder if the battery is going dead?" I took it off to see how many lights flashed. None. Boom. I caught it before it went completely dead because I recognized the low battery warning sound!

Also on Friday, I made a phone call with Innocaption & it went well. I wasn't able to understand the person speaking except whenever any numbers were spoken, I got all of them 100%! Baby steps. A 4 month old baby wouldn't understand the meaning of numbers. My theory is that there are only about 10 possible numbers (including zero) that might be in a phone number  (for example) and the patterns of the numbers are different enough that if I know I'm going to hear a number, I'll get it. I may have trouble with 5 and 9 but I've gotten them both right so far.

Anyway, this week I have my AV session and next week I have another mapping session..

Also I've been learning to play a concert sized ukulele.

I've also have been trying out different versions of Blowin in the Wind & listening to different performers (including Bob Dylan) playing it... Bob Dyan sing it in an almost choppier way than I think of the song in my mind. I need to listen to a few more performers, I may have come up with my way of  how the song goes from Peter Paul and Mary... there's one in my book that I think is in the key of C... that one is okay. It starts with G and goes back and forth between G, C and D... the other one starts with C and goes back and forth between C, F and G7. I like the 2nd one best. I use a down down up strumming pattern... I've TRIED doing DDUUDU but I can't get the second half of that correct. I need to isolate that for practice. In the meantime, I'll use DDUDDU for this song.

I've also been terrorizing my family trying to hit singing notes... need to see if I can learn to sing on my own or if I might want to find a teacher. I do occasionally hit a right note when humming to a program I found...but Gary said that most of my notes are flat. I've been trying to hum simple sequences to practice going from one note to another...  I have NO idea what notes they are.

Our cat, Pepper had gone missing about 2 or 3 weeks ago... Friday, seemingly out of the blue, she showed back up! I was very relieved to see her... and she velcro'd herself to me that night...

Tuesday, November 18, 2014
      ( 12:16 PM ) Jessica  
I wrote this a couple of weeks ago & I don't know why I didn't post it, so I will post it now!

This morning I realized that music is starting to sound different/better... I'm starting to hear more notes & such... most of the time when I listen to music, I'll play new-to-me songs since I don't have a "history" with them... I keep expecting them to sound like they used to, and I hope that someday they will, but I don't want to listen to the old songs too often because I don't want to "ruin" them... I just go back once in a while to test to see if the old sweetness of the sounds have returned yet... I'm listening to that playlist now and it seems to be coming back little by little.

I have trouble hearing my pennywhistles, but I'll keep trying. I just won't play them a lot because it's a little frustrating. Someone else posted that tin whistles helped her (or him?) enjoy music because s/he was able to feel the sound. I can't quite feel the sound in my fingers, not even with my lowest B-flat whistle...

Last night, when we went to see Scary Cherry & the Bang Bangs play, I tried listening to the first two bands without being too close to the speakers as suggested by my surgery "twin".  He suggested that for loud shows, this time I was able to hear the guitars as well as the drums, both the bass and regular ones... last time, I could only hear the drums and vocals. That was weird & disturbing!

When SCABB came on, we wanted to stand near the stage because... well.. that's what we do!  I was prepared to drop the volume way back or turn off the CI... didn't have to, in fact I felt like I would have liked more volume, but I didn't mess with that too much. I couldn't hear the vocals...

I've also noticed a couple of new sounds recently: I can hear my phone if it's in a room with me and not in my pocket, and it will usually get my attention, but on Friday, I heard the phone go off from my pocket. I was kind of expecting it to go off but wasn't consciously pay attention to it... I wonder if I'll be able to hear it when I'm not expecting it to go off from my pocket..

Last night at the store, I understood the cashier ask me if I made my hat! I wasn't looking at her and started to ask her to repeat what she said when I realized I did not need to! :)

I'm wondering what else my CI has in store for me... I may be starting to understand people, but it's still not clear & I don't think I could pick up something totally out of the blue...

As of today, my pennywhistles are starting to sound better, and Gary said the notes I play are sounding better. I still have a ways to go with breath control and also, I'm still coughing, so that is probably not helping...

      ( 12:14 PM ) Jessica  
It really sucks that Purple did away with their relay. I guess I can understand why they did it, but now I'm having to set up new options so that I can still make calls without asking others for help. (and several others!!)  I sent Sprint the info they need & also, when I get my new phone set up with my old phone number, I'll check out Innocaptions and maybe Clear Captions.

Yesterday was mapping day & I also saw the Audio Verbal therapist. We did some testing to see where I am at & I can see that I need to focus on consonants. I do well with words of different syllable lengths & also with vowels.. but words like box, socks/man, ban, pan, with the same syllable length, same vowels but different consonants are hard. I'm told they are hard for hearing folks as well, especially when there's background noise.

I'll practice listening to the consonants on Angel Sounds and when the Cochlear Implant Daily Rehab on Facebook group works on the consonants, I'll follow along. I also enjoy listening to the word list on Cochlear's Website.

For the new maps, we raised the volume a bit and also added UltraZoom in a slot & also have one slot that has telecoil turned on. She also made some mic changes: one slot has 100% tmic and the other one has 100% headpiece mic. She set these 2 slots up this way so that if the tmic decides to fail, the CI will still work. The last slot has the program that was in slot 3 last time. The neptune is set up with the same program, but one slot is 100% headpiece mic, another is aux only and the other is 50% aux 50% headpiece mic...

SO far it sounds good but I still need to see how music sounds with this map. I don't think we made any big changes to the higher frequencies... maybe a little bit, but the volume is a bit louder.

I also got my hearing aid back on Friday... the place I got it repaired mailed it (and the new ear mold) and it went on a wild ride: first it went to Garland where it was pronounced mis-addressed. Then back to Carrollton and they then sent it to Austin & it got sent back to Carrollton from there. Finally it made its way here.  The hearing aid sounds good, gives me low frequencies & some 3D sound. Nothing sounds clear & I keep it set low for now. I don't know if I will want it much higher or not, we'll see. Since it's not a Phonak hearing aid, I won't be able to use it with any of the gizmos I use for the CI like the audio cable or ComPilot.

Also, I finally got a ukulele. I want to play the DVD that I got so I can learn how to play. I've seen some youtubes on line, one with strumming patterns & I can lipread the guy pretty well. I watched a couple minutes of the DVD and I can tell that I'll be able to follow along.

We got hit by some cold (for Texas/November) weather. It was just cold at first & then Sunday was mixed with drizzle, and later, snow. Since we stayed in Dallas for the weekend, we went to the unicycle group on Sunday afternoon, didn't stay long because of the weather... we went on to have some pizza in Allen, TX. It was pretty good pizza!

Monday, October 27, 2014
      ( 9:58 AM ) Jessica  
Oops, I forgot to post recently! I've heard that folks will stop blogging about their cochlear implant progress and such once they get to a point where things don't change so much, but although things seem to have slowed down, I still have a lot of "wow" moments! I'm just not a faithful writer/blogger. I will try to post once a week or at LEAST once a month...

I have a cold... it started Saturday. I was supposed to see Leslie tomorrow, but figured it would be best to reschedule.

My latest new cool sounds are:

I can hear the beeps when I check out groceries at the self-checkout line... they're low & quiet, but I know what they are and it makes checking out quicker & easier! I used to hear this before surgery but this is a new post-surgery sound...

I can hear the beeps when I type my PIN number when getting gas. I've never heard this sound before. If the keypad has "flat" keys, it's harder to know if the number I punch in is going through or not so I used to have to look for the asterisk to let me know it went through.

There are more cool sounds (and some not-so-cool... if I'm awake and reading or watching something on the tablet & Gary is asleep, he will probably also be snoring.. listening to music and stuff will block that out, though!

Words still aren't clearing up so I still have to read along or know in advance what to expect word-wise. That's fine, I know it'll take time... the other day, I had an eye exam and the optometrist had me comparing 2 charts to tell her which looks better.. she called the charts 1 and 2 and I was able to tell the 2 words apart because we had planned it in advance.

Something else I noticed is that most people sound male to me & sometimes scratchy. I think that may be the Darth Vader effect that people talk about. I never did hear people sounding like Mickey or Minnie Mouse or chipmunks. It's just that everyone sounds male & I don't notice much difference in the voices. I'm told that will change.

My music tastes are changing: I still love my old favorites but they sound weird sometimes, a bit distorted & I can't hear all of the sounds. I'll write more about my maps another time, though I still don't quite understand them, just that my audiologist has them set to 80 IDR... (input dynamic range).

I'm still not sure if I prefer the Neptune or the Naida... I usually wear the Naida when I go out and the Neptune at home, mostly because the Neptune is more comfortable: I can wear it off the ear. The Naida sometimes irritates my ear where the Tmic goes over the top of the ear... I can also plug the Neptune into my table with an audio cable. That is nice. I try to remember not to plug it in when the tablet is charging.. just playing it safe! I don't want to get zapped. I can stream sounds into the Naida with the ComPilot, but the bluetooth announcements are annoying... I should try it without bluetooth, with the audio cable connected to whatever and the ComPilot...

Speaking of getting zapped, last week, I noticed that our local store was giving out electric shocks from static electricity... I need to get some dryer sheets to keep in my pocket to minimize this...

The batteries on the Neptune don't last very long, about 4 or 5 hours... not sure of the exact number, though...

The hearing test last month went well: I'm hearing at the 20-40 decibel range now... a HUGE improvement from before surgery, not sure what the range was with my hearing aid, but I think I can hear better now than with the hearing aid when I was younger. I seem to be understanding people fairly close to 100% with lipreading... other people seem to be understanding me better as well, but I still have to repeat myself sometimes.

The tinnitus has abated a LOT... I've got it now, it's mild, but it's probably from coughing...

We lost Molly & K9... I'm not sure what happened to them... I miss them and hope that they are okay, but suspect otherwise... we checked the animal shelter and they weren't there... and looked around a bit for them. We had wanted to try to find a new home for at least one of them...

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Monday, September 08, 2014
      ( 1:42 PM ) Jessica  
I've added some new sounds to my list of sounds I haven't been able to hear... I can hear whispers along with voices, but words still sound garbled to me, but the pattern of the words help boost my lipreadability to close to 100%.  The other day, Gary was talking to me and I didn't hear his voice, just the whisper & I asked him "are you whispering?" and he said he was...

The other day Pepper (our cat) was yelling at the window and I didn't know what it was. I told Indy to be quiet... my son told me it was Pepper. Oops! :) I wonder if I will be able to hear birds yet. I found some YouTubes of bird sounds, they are high pitched... "eek eek eek"...
I can hear Indy barking if he is in the living room... probably all the dogs, but Molly doesn't bark anymore (I think she may be deaf from an accident that happened about a month ago) and K-nine and Nutmeg rarely bark.

Yesterday I found myself turning the volume down on the tablet. I was watching a TV show at the time.  I've also been reading e-books while listening to the audible file. Amazon is set up so I can listen and read at the same time and it highlights the words so I don't lose my place. I wonder if I will be able to turn that feature off later on so I can learn how to keep my place when I get better. I was listening to something else the other day while reading along and it didn't have that feature. Gary was able to help with that.

There is also Overdrive for library books. I'm still researching that option.
Also, books on CDs and DVDs but I don't use that at the moment... right now I need to have a book to follow along with.

I also go to the MedEl Soundscape page to practice listening... mostly Let's Go Shopping. The words still sound garbled... watermelon and strawberry and pineapple still sound sort of the same to me. "These are grapes" is the easiest... I can sometimes pick out pineapple.

I have to go onto one of the other computers to do the AngelSounds exercises and there is also an English as a Second Language site here and there are others to listen to. I can listen to this one on my tablet, but not the Soundscape page (because it requires flash & I haven't figured out how to set that up if it's even possible).

I'll be getting a hearing test in a few days, curious to see how I do! It's nice to be out and about and not have to ask people to repeat themselves or explain that I'm deaf, that I need them to speak slowly. If someone turns away while talking, I can just ask them to face me because I need to lipread... haven't needed to do that yet. What's even cooler is that I was able to go a whole day without anyone asking ME to repeat myself! My speech must be getting better from reading out loud and paying attention to my speech.

Gary is picking up a set of headphones for me to use when listening to stuff on the computer and tablet. A friend told me that it'll bring the sound closer. Also, it'll allow Gary & I to listen to our stuff without getting muddled between the two...and maybe I won't have to listen to the weird puffing (bark whispers?) that Indy does out the window...

Last but not least, the other day I heard Gary fart & he confirmed it! I'm easily amused.

Wednesday, August 27, 2014
      ( 12:44 PM ) Jessica  
It's a week since activation and I'm having a lot of fun with this... what follows is a list of progress bits:

Activation day: everything sounded like beeps, footsteps, voices, etc. At first, there was a delay, I would see them speak and then hear their beep voices. The only 2 things that sounded like they were supposed to sound that day was crinkling paper and music.
          SOMEHOW the pattern of the beeps allowed me to understand people...
          Even people who were previously difficult to lipread.
          I was able to understand almost all people who my son confirmed had accents, except for one man
          that he was not able to understand either.

I don't know when voices sounded like voices instead of beeps, but I think it took a day or two.
Thursday I was able to hear the train, which is about a block away.
Saturday I was able to have a brief conversation with a librarian that I always had trouble understanding.

Monday was my first AV session and I also saw the audiologist and got 3 new maps in my processor.
Monday morning, I heard Cracker meow. Yesterday I heard BleuMaus meow. It's easier to hear if the a/c is not going.

I think I have the processor set to 3 now, so am no longer using the maps from last week.
I need to exchange a few items but need to find out what others find useful. I need to find ways to wear the Neptune comfortably since the processor is off the ear. I have the clip attached and think that I need a 12" cable, maybe shorter (which I thought I ordered, but I have a 12" cable for the Naida, which I don't need.)
I need to decide which other battery to keep, the 110 or the 170. The 170 and 230 weigh the same but the 170 is shorter...

This morning, I woke Evan up by reading to him from a graphics book about Houdini...hopefully that's more pleasant than by being woken up in a more naggy fashion! :)

We're pretty much convinced that the accident Molly (7 or 8 month old puppy) had almost 2 weeks ago left her deaf. Darnit, I want her to be my hearing dog... she is a good size (40ish pounds, I can carry her if I HAVE to), good temperament, very sweet, etc... but if she can't hear the alarm and such, no go... her brother also has a good temperament, but is MUCH taller and at least 50 lbs...

One clue is that she no longer barks... she used to bark a LOT...

I don't HAVE to have a hearing dog to take everywhere...

Yesterday I worked on the Telling Tales exercise on  this site and was only able to do the first one. This morning I tried the Going Shopping exercise and was only able to complete level one twice and it took about 2 minutes and 15 seconds because I needed to repeat over and over and wasn't sure. There is an introductory level which allows me to listen to the sound of the different fruits and vegetables. Words sound very muddled... I am able to hear some breathy sounds!

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      ( 12:05 AM ) Jessica  
Monday was my first audio/verbal session.
We mostly went over what sounds I've been hearing, etc.

So far I have heard the train, which is about a block away... what were beeps on the first day now sound like voices, but they are not clear yet.  I heard our cat Cracker meow yesterday morning. It was VERY quiet, but I heard it. It's not loud enough to get my attention, we were having a conversation.

The A/V therapist was very curious about the hair color of my birth family as she said she sees a lot of redheads in her practice... my birthfather (who I have never met) has red hair.I wonder if it is related to my LVAS, which was seen in my MRI.. also surgeon found some more deformity... my parents and aunt said I wasn't born deaf & that the fever I had when I was 2 made me deaf... I'm still not sure of the role of the LVAS...

We listened to sentences with different patterns like "Reuven is 13 years old" "my name is Jessica". I could mostly pick which one by the pattern and could only pick out the words because i knew what was coming.

She wants me to read aloud and also practice some sentences with my name and with mom. Right now, the only time that "mom" will get my attention is if I hear it in silence..and then it just sounds like a voice, not like "mom"...I know what mom sounds like, I just can't make it out (yet?)

I'm hearing sounds that most people tune out, like the dog scratching or shaking his head or the train a block away.  I love hearing the train right now and may go to the tracks to listen to it closer up...

Also, I was mapped yesterday: I got 3 new programs and am using the quietest of the new one and kept 4 and 5 of the old ones. Maybe next time I'll ask if we should keep just the old one I use most and get 4 new ones. I don't think I'll be going back to the old ones... just a security/crutch thing! OR I'll see what Leslie (the audiologist) recommends. I'm using program 3 right now, which is the quietest of the 3 new ones. Programs 1 and 2 are the old 4 and 5... 

I want to learn/understand how the mapping works. Basically yesterday she set up 5 tones and we adjusted each tone until it was comfortable. I would have loved for the highest frequency to be louder, but I could barely hear it... 

We also met the guy who had his surgery right before me. We were both talking in Cochlear Implant Experiences on Facebook a day after surgery, talking about how we felt, comparing notes. When I checked his profile, I noticed that he was in Dallas... we then realized that we had the same doctor, etc...

One other thing that I'm not sure if it is a concern or not, since surgery, my voice has felt weird... almost like it feels thick... I thought that might go away after activation... my voice seems somewhat deep to me... but I'll have to do some reading aloud to get more used to my voice. I mentioned it to the nurse at the clinic and she spoke to the doctor who said to wait until at least 2 months after surgery to look into it, so we'll see. I just want to know if this is a normal side effect from the breathing tube/surgery... it wasn't one of the ones listed.

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Saturday, August 23, 2014
      ( 3:08 AM ) Jessica  
I've just been taking it easy yesterday and today. Sounds are clearing up pretty quickly. I'm still hearing beeps with some sounds, but many sounds that I can hear are making a little bit of sense. When Indy shakes, it sounds more like a slapping sound from his ears flapping against his neck... voices on videos sound like what I remember them sounding like, but I can only make them out if I know what's coming. Captions help here. This applies to music and speech. If I know a song, I can tell if it sounds right. I think I'm still missing some musical frequencies.

At the moment I'm not able to lipread people speaking in videos, but I can in person.. weird?

My voice still feels weird, and I'm still wondering if something is going on. I'm not too worried about it, though.

I wore the Naida during the day. The disposable batteries have not died yet. I still have not decided which of the 2 rechargeable Naida batteries I'm going to keep, and the 3rd will be exchanged for the ComPilot.

This is awesome and seems like I am picking things up faster than I thought I would. I do need to go out in public more and talk to people and listen to things. Tomorrow I will go to the library.

My sister just said "don't go to the mall yet!" umm... too late, we went Wednesday: it was that or sit in Dallas rush hour traffic! It was fine and even enjoyable...

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Thursday, August 21, 2014
      ( 11:59 PM ) Jessica  
Note: I wrote this post a couple of weeks ago...after surgery but before activation... I forgot to post it.

It took a while for me to decide to actually get a cochlear implant. I think I heard about them the first time in the early 90s, when I was living in Maryland and had a friend who had one. For some reason, I immediately discounted it as "not for me"... 

It wasn't until March of 2013 that I considered it. I went in for a hearing test & the audiologist talked to me a little about cochlear implants.  I was STILL thinking "nope, not for me, too close to my brain!"
The ENT at that office also spoke to me about it and said they would send a referral to a clinic that does cochlear implants. We went on June 11th, 2013 and I was impressed with all the information I got. All I needed at that clinic was to get an MRI to see whether or not there was any reason i couldn't have one.

My other concern was music, because the audiologist at the first clinic I went to basically told me to forget about music. Um. No. I love music too much for that. I did some research and found out that there is work being done to make cochlear implants work better with music and for some, it just does. I don't know what the factors are that make music good with a CI for one person and not another. I suspect it has something to do with hearing history and since I had piano lessons for a few years since age 7, followed by flute in high school & dabbling with music since then, that may be on my side. If not, they are working on programs to make music better for CI folks. However, there have been some people with a strong music background who have said that music didn't sound good to them.

What's interesting is that I was apparently born with Large Vestibular Aqueduct Syndrome, which probably played a large part in my hearing loss. this is something I'll bring up with the doctor next time I see him. 

 I'm feeling pretty much back to normal, except my throat feels a little weird when I talk, possibly because of the lack of sound in the left ear & maybe from the breathing tube during surgery... the others think my voice is back to normal now. Whether or not I have any residual hearing in my left ear remains to be seen... I think it takes about a month before they know, I'm not sure. Either way, what's important is NOT the residual hearing, but the cochlear implant...

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      ( 11:41 PM ) Jessica  
The cochlear implant was turned on yesterday... it went well. I wasn't expecting a "rock star" activation, I figured it would be beeps..and it was. At first there was a delay between the mouth movements and the beeps but didn't last too long. We also had the equipment orientation...

Most of the sounds I hear are interpreted as beeps but they actually made lipreading easier. There is a pattern to the beeps that i somehow interpret into spoken words and sentences ... I was able to understand a couple of people with accents (my son told me they have accents) without asking for help with what they were saying. We went to the mall after lunch after activation, so I got to speak to a few people...

A few things sound like they are supposed to, like paper rattling (from my son's paper shopping bag), and some voices are starting to sound like voices... and... shocker of the year: music! I was almost afraid to listen to music this soon and I decided to go ahead and try it so I would have it as a gauge for later. I picked up my pennywhistles and played a few scales. I like the lowest b-flat whistle the best..then I got brave and turned on spotify and the music sounded okay... not perfect, but it doesn't sound horrible like others have said it would at first. It's better today than yesterday.

Maybe to someone else, what I'm hearing would sound horrible, but I was expecting it to sound horrible and I don't think it does. I know it will sound better later. I have one of my Spotify play lists going now. Spotify is a website that has LOTS of music and I set up several play lists with different songs/types of songs/artists, etc.. I have a "CI practice" list... songs I'm pretty familiar with. What I think is happening here is I recognize enough to put together what I already know.

Earlier today, I tried out a practice listening site and got about half right. It was a list of multiple choice sentences... i was able to pick out some by the number of syllables/sentence pattern... I figure that between now and my Audio/Verbal session, I'll just play around with and pay attention to what I'm listening to and let the specialist tell me what exercises to practice on. I also want to practice speech because my voice feels weird to me... since surgery... need to email the surgeon's nurse about that...I wonder if I'm experiencing something that's a side effect from the surgery. My throat feels thick or something when I talk.

Also, when it was quiet, I heard something that sounded like music and was looking through my tabs to see where it was coming from and Gary told me it was the train... (about 1 to 2 blocks away)... later I heard it and verified it with my son...

When Indy shakes it sounds like pennies in a can.

One funny thing: my kids all figured out how to talk to me without using their voice. I don't know when ir why they developed this but it made for some interesting times in public... looked like I was having half a conversation. This kind of thing caused sibling fights because they didn't know someone was already speaking to me. Oops.  Now that I can hear, I caught my son doing that several times yesterday...

It's just fascinating... the different sounds and learning about the equipment, etc... I want to hear all the things and talk to all the people!

My oldest son came in from out of town as well and it was great seeing him.

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Welcome to Patchwork Girl's Rambling Warps blog... where I talk about just about anything from projects to just stuff to rants and whatever... I started blogging here on July 31st, 2002 and have been blogging on my website with Movable Type. I do not promise to blog regularly! I will blog when I feel like:

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