New Mapping Update!

Today I got new mapping for both my program, my program have 3 electrodes still turned off but my program 2 have all 22 turned on and both have new loudness and softness level. Its really different now. But so much better, with program 2 I can hear jason deep voice "rumble" its hard to describe but I finally hear it cuz thats his true voice I was so excited! haha

I got CI moment today also, I was at dining room looking out the back door because its snowing outside (isnt it soooo strange??? I got snow when I got out of surgery, I got snow when I got out activation and I got snow when I was done with 2nd mapping appointment!!) anyways I was there and I heard sound and I was thinking maybe its from my cat meowing, heard it again I was like "no, its from there where my fiance is" and 3rd time around I was positive jason's calling my name in laundry room, we're talking about 30 feet in different room! WOW! I went in to look at jason and he said 'good! You heard me!" Yay! lol

Sound List

well I know this is long overdue but here is my sound list that I heard thats new or something I noticed and wrote down on my sidekick notes, theres million other noise but I dont think its important enough to put it down like general noise you know? Anyways here it is.

New/Noticed Sounds
* stomach growling
* stair creaking
* sizzling
* crunch when eating
* scissor clicking
* last 2 string of the guitar plucked
* brushing my hair
* hand rub together
* fire alarm low on battery warning beep
* spongebob squarepant theme song
* music in between scenes
* smacking my lips
* clock ticking
* sidekick keyboard
* computer keyboard
* AC Vent buzzing
* cat clawing the stratch post
* rain
* cell phone ringing
* aquarium filter sound
* sigh
* meowing
* purring (my favorite!)
* chopping veggies
* other person breathing when hugging
* door squeaking
* clothes rubbing against chair
* sniffling
* yawning

Annoying/Horrible sound
* toilet flushing (the WORST!)
* faucet
* clock ticking
* AC vent
* food court of the mall (LOUD)
* people talking so loud
* loud music
* rap music
* paper rustling
* aluminum foil
* aquarium when low on water (filter makes so much racket)
* gun firing sound in video games

Favorite Sound
* cat purring
* techno beat
* cat meowing
* rain
* my fiance saying 'I love you"
* movie sound effects

I'm Engaged!

Guess what everyone???? My longtime boyfriend of 17 months Jason asked me to marry him! Best Valentine's day ever! No plan or detail yet I'm only engaged for 1 day! Ha ha I'm so happy!!!

Picture of my CI!

Activation!

Sorry for the late update my internet wasnt working right last night.
Anyways heres the update, my activation was interesting lol.
first we did beep for program 1 we used number 2 magnet. I cant describe it all but it was interesting, my activation video will say it all. then between break we went out making racket in building lmao. then went back in to makes program 2 beep test. when they turn into live voice OH MY GOD loud buzz it was unbearable at first and I was totally shocked lol. my bf's mom start crying lol aww, and i heard voices and i can pick up some speech right away my audiologist was surprised. And I can say speech sound soooooooooo much better than hearing aid already and I'm only on crude map! and the sound didnt sound robotic or beepy at all it sound sort of like hearing aid but sooo much higher pitched and some tone thats so high that it sound like feedback like my laughter it sound like feedback at first little while then now it sound little less like feedback lol.
look like im already on good start! cant wait to see how much i accomplished after 1 year!

by the way the video wont be on here for while, dont have right software for video and dont have DV cord either and also im totally clueless with this thing haha and also the subtitling the video will be long hard process it got bunch of voices and sign in the mix and its really long and some clip in video blocked the sign and all complicated stuff lol sorry! please be patient it'll be worth it and its really different than all other activation video too!

I heard so much stuff i can't list it all.
but my favorite CI moment so far is I heard spongebob squarepant theme song so super clearly haha i even sang along with it and cc wasnt working right so its amazing! lol
hmm not sure what else to add yet.... i'll update more when i find something to update more about LOL

My Desired Result

I was bored one night so I made this audiogram to let everyone know what my audiogram look like and what I am hoping for. Also if the result of my CI didn't get to my desired result line (pink line) I'm fine with it as long I can hear most speech sound and try to lipread the sound I couldn't hear

Post-Op pictures

today was my post-op appt the surgeon ripped the tapes off fast but painful ouch! so heres my incision without tapes on.

Ahhhhh..............

*sigh* I forgot how good it feel to have clean hair!
Ok so what I did it few days earlier but I was being super careful washing my hair without let any water touch my tape covered incision and ear, I had to wash it cuz my hair was getting super slimy and sticky it was beyond disgusting so I had to do it today not in 3 days later!
Lol well I'm doing great today I started taking Tylenol and it worked, no more Vicodin for me! YAY!
Only experiencing very slight discomfort still, more like tightness, very slight stiff neck if I turn my neck too far and my jaw still dont open all the way and mild headache from stiffness thats all! Nothing too uncomfortable so im almost back to normal self!
The Activation day seem like LONGGGGGG time away from now ugh!
i"ve been trying to stick stuff to my head like refrigerator magnet, metal object and what not and NONE of them stick :-( I just want something to prove myself that I do actually have Implant in my head haha.
I thought being in hospital will hit me that I will have CI and it DIDN'T! So I still don't believe that I have CI and it haven't hit me YET!!! Ooh gosh, so apparently I'm extremely impatient for activation day so when i feel magnet stuck in my head and heard beep... That's when i WILL believe i have CI! ha ha
well I'll update again after Post-op to show off my incision WITHOUT tapes i wonder what he used hmm staples, stitches, glue? hmmm we will see in next post!

Finally an Update

Alright Im finally feeling well enough to come to computer and typed up an update on me.

Heres it goes.

Jan 14th, Monday:

I was sooo busy all day cleaning the house, bedroom, bathroom, washing all laundry, put dishes away, put on clean bed sheets, took care of my 2 fish tanks, packed an overnight bag, everything i needed to do before surgery finally all done then rested just relaxing on couch. then went to bed around 2 pm I was too excited to go sleep so that is why i went to bed so late lol.

Jan 15th, Tuesday:

Woke up at 5:30 am get dressed in lovely pink button-up shirt, black with white polka-dot sweater, maroon aeropostales sweatpant on then waited for jason my boyfriend to get up and then we left to go to hospital around 6:00 am and arrived at hospital at 6:45 got valet parking ooh fancy then went in did paperwork, waiting for couple while then went in pre-op room get IV, questioned about my medical history blah blah blah then finally wheeled to OR room so scary! all tools, bright light, machines, bunch of people scrubbed up and in gown and bunch of stuff on table making me super nervous then anesthesiologist gave me sedative the part i was dreading the most, it worked well calmed my nerves and made me sleepy..... BUT at very last few seconds i couldn't breath at all! i was gagging, gasping for air and then boom next thing i know im in recovery room, i couldn't keep my eyes open for next 3 hours then finally can stay awake when needed they moved me to different room so my boyfriend could come in to see me, my boyfriend told me as soon my name moved from OR room to recovery room on computer screen in waiting room the snowflake fell and then few seconds it started to snow and it was so beautiful i thought it was awesome because i wanted snow and i finally got it and i think its sign that its going to be successful!. I was VERY sleepy keep falling asleep then finally time for me to go home they sent me home early because i was doing so well. arrived home my boyfriend carried me upstairs to my bed and fell asleep! then i don't remember what happened after that haha

jan 16th, Wednesday:

Same things couldnt remember diddly squat i was high on painkiller and keep falling asleep and zoning out, ate pudding, soups and sleeping all day no real pain only very sore throat, stiff neck and super sleepy.

jan 17th, Thursday:

same thing zoning out dont remember much, except started to experience slight pain in where implant is:

got my appetite back around early afternoon i was starving and keep bugging my boyfriend for food haha

jan 18th, friday (today):

so much more alert, less stiff neck, felt sharp pain in implanted side and inside where eardrum is, ate alot of food took medicine, watched movie just relaxing, had good day today. pain's tolerable nothing too severe only discomfort and before the medicine kicked in i had sore jaw, fullness in ear, tender and sore to touch on my head where implant is. that's it. sore throat is almost completely gone today!

I also added few pictures as you can see enjoy them also its slightly gross but it still got tapes on so no big deal. also im not 100% sure but i think the blue marking on my head is where my implant is.

the doctor shaved more than they told me grrr but its not like too horrible though, oh well.

I will add more after post-op appointment to show my incision without tapes on and will add more after activation too to show off my sparkly brand new pink CI!

Finally!

I finally got time for my surgery its at 9 am BUT i have to be there at hospital at 7 am to do paperwork and routine things like going over my medical history blah blah blah then wheel to OR room at 9 am if everything work out perfectly :-) i'm going to stay at hospital overnight so i wont be able to update blog till i feel like i can get up and go to computer lol so hopefully wont be long i dont want keep you on suspense for too long :-P
Wish me luck!

Pre-Op Appt.

Well...
Today i went to Pre-Op all nervous and no appetite because my boyfriend told me there will be physical and blood test there and i hates blood test because I'm under 100 pound and one vial of blood makes me woozy haha.
But turned out I was all nervous for nothing! I didnt need blood or whatever test before the surgery! So I assume they will do that on the surgery day, My surgeon listened to my heart and heard my heart murmur today, usually doctor didn't hear it but today yup but he don't seem to be worried about it he just told me i need to get heart checked up and catch up with my cardiologist after I told him I didn't get any check up in long while (12 years lol). So everything looked good today and I'm good to go!

I'm little nervous about surgery but I'm sure once i entered the room and it hit me and become super nervous and maybe crying lol I don't know we will see!

Also I should be totally fine going under since there's like people with serious or fatal heart problem going under general anesthesia and wake up all fine and mine is just small murmur so its not big deal right?

Just hope sedative or part of anesthesia whatever triggered it work what it supposed to this time around and makes me calm down and relaxed a bit instead of the opposite effect and makes it worse! last time it was crazy my legs was so shaky and my heart rate was super fast at one point it reached 140 bpm! (beats per min) and set alarm off!

just hope things work out smoothly and going under with no problem just get calm, sleepy then passed out and wake up, NO freaking out shaking, set alarms off and causing scene in OR room!

so wish me luck!

Still haven't gotten my time for surgery day but they told me to call day before surgery day to get time and whatever I need to do there.

I'm kinda hoping it'll be in afternoon so i can sleep in to makes myself not hungry instead of in morning when I'm super starving, we will see!

Keep eyes on my Blog I'll update again night before surgery and after surgery whenever I'm up to type a blog about surgery day and then few more in between to tell how I'm feeling and pictures to put up too and update again on Feb 12th my activation day!!

The Result!

well i finally got hearing test and she said if i can do it with hearing aid on and if it get too uncomfortable we can stop so i went ahead to do the test and first was word test with no lipreading i didn't get any correct lol and then next was sentence she stopped halfway said 'forget it, you're not getting any diddly squat so let do one with lipreading" haha so we did it and i actually scored 42% with that one with sentence but we didn't do one with word think she forgot but thats ok. Then we talk more about the sensations I'm getting from hearing aid and blah blah then finally she said 'well how does feb 12th, tuesday sounds?' first thing came to my head was "wait, what? whoa sound like I AM candidate.... YES! WHOO" lol and said 'oh yes sounds good, 9 am?" then that was it Im so excited that i am candidate finally! Yay! so next time i'll update is for my pre-op appointment thats in january 9th so watch for it :-)

Audiologist Said

Well I emailed my audiologist to ask few question mainly about my issue with hearing aid and she told me this " Stop using it......I am guessing that you get no benefit from a hearing aid and we will try to test you without using one at all. I will also relay this medical concern to Dr. T (my surgeon)" and I asked if she's sure about it since I thought hearing test with best aided condition is required for insurance to pay and stuff and she said " If there is no noted benefit from hearing aids, the test is still valid. WE just needed to try...and you tried. I don't want you to be uncomfortable, so stop using it as you have tried long enough." So look like trying out hearing aid is more important than hearing test on best aided condition and if surgeon agree with her then I don't know what that mean maybe mean I'm candidate??? Eek I'm getting nervous hope I am. Lol one more week till my appointment with her and don't know if still need do test with ha if surgeon still want to or do test without ha, we'll see.

loaner's hearing aid

its day 4 and I am starting to suspect that i have severe recruitment because as soon as i take my hearing aid off I get this horrible loud tinnitus in my right ear (its the ear i wear hearing aid on) and it imitate the sound i heard right before i turned off the hearing aid and it wont stop and sometimes it'll change sound like pulsating sound and also if i look at someone touch paper my brain makes up noise and makes paper rustling noise i know i didnt hear it cuz that someone didnt even rustle up the paper, stupid brain haha an if man talking it sound like bad stratchy rough voice for man and loud high pitched morse code for women its horrible i hated my hearing aid and to top it all my ear is in pain, it have blister in the inside of ear not ear canal the other part of ear and my ear drum feel like its bruised or something from hearing aid blast the sound oh man i took a break from it for half of the day and whole night hope my ear heal up little bit. I want to guess my speech discrimination for my hearing test whenever it comes (she said tuesday of november 27th but we'll see) i would say 15% now with hearing aid and no lip-reading and with lipreading hmm maybe 35%? Compare to 0% unaided.

My appointment day

Well today was supposed to be the day I get tested for best aided condition and tell me her answer for cochlear implant candidate and finalized the process and go ahead with surgery BUT once she put Oticon Sumo DM on me and *groan* I didn't like way it feel, it feel like hearing aid blow so much pressure in my ear and brain and my right eye keep umm... hard to describe, like moved, disorted for second (only right ear have hearing aid) and makes me dizzy for 1 sec every spoken word lol and after while my eardrum start to get sore and after all day I get used to it TINY bit but still suck. So she decided to postpone and want me wear it for 2 weeks then tested me on best aided condition to get best result to me adjusted to hearing aid. So it sucks cuz I want my answer already heh. That's all up with my appt today

and 5 hours later i heard word "that lawyer" so crystal clear it surprised me from tv i wasnt pay attention to it till i heard it and went 'whoa i heard that" lol crazy. but other word still sound garbled and woman voice if talk too fast for me sound like da da da da da da da its so annoying lol

surgery date

my surgery date is january 15th 2008, pre-op appt is on 9th and post-op appt is on 23rd im so excited and i havent heard from my audiologist about mold yet and my phone broke and its her only email she had to contact me so i sent her with my computer email to see what address i got right lol i dont know which one (com, net, org) eek

Surgeon Says

ok heres what happened, i came in and surgeon and his assisstant brian came in with case of cochlear implant nucleus freedom to show me and let me try it on its HUGE but not that crazy heavy though it just so overwhelming my ear so i told him i want mini bte so he brought out order form and told me i get 2 speech processor so I told him i want my regular bte in pink and the other one is mini bte which i plan on wearing most of time it will be top part pink and bottom part i get 12 different colors! im excited! OH almost forgot, my coil will be brown so it blend in my hair better.
he told me he doubt that hearing aidwill benefit me enough at this level of deafness he told me he will be surprised if it actually does so he went ahead ordering it and sent it to company and told me his assisstant tina isnt in today so have to call her later i think monday she should be in by then to schedule the surgery and i STILL have to do hearing test anyways just to prove my insurance that its medically necessary blah blah blah so whenever I call i will KNOW my surgery date!!!! Im so excited and of course i NEED to not get too excited because what if they cant schedule it before my school start? and also what if Jody the audiologist will actually be reasonable like if i scored under 40% in speech reception test then i get it not on level of loudness i heard you know?
But the most important of them all is i have very very very good chance of being perfect canditate!
i will update blog as soon as i know the date and another post on how my hearing test went and if i get it or not!!!!!

decision on candidacy delayed

sorry everyone I've been busy and forgot to add update about what happened with my appointment that supposed to be final one to determine my candidacy but didnt work out. I copied info from www.alldeaf.com on what i said on here so i didnt leave anything out except some people response after first post only on last post. so here it is

*Well I didn't get confirmation today because she used quick mold as temporary mold for hearing test with best aided condition but as soon she pulled mold out she was like *gasp* your ear canal is so small, hope I can fit tube through this. So she tried and it ripped it completely so she had to redo and put in box to mail to company so that mean I have to wait EVEN longer before getting her decision ugh also she seem airheaded (meaning dumb) and she is pretty pushy about not getting ci and use oticon instead I'm like "no I'm not interested I want ci so focus on that please and just do hearing test as soon as we get mold to see if I am candidate ok?" so that's it for while but she told me to go ahead schedule for surgery and if she decided to say no after we get hearing test then she'll cancel the surgery and if she said yes it'll happen so I don't know, we'll see I'm little worried if she gonna rip me off like if I heard tiny blip and she decided to go for hearing aid instead of ci you know what I mean? Hm just really hope I get it cuz I don't want hear horrible distorted sound and loud static buzzing noise *sigh*
* She is audiologist that work with my surgeon and she's only one so if I want go other audiologist I'll have to go one in baltimore, maryland that's like 3 hours from my house and my surgeon I have right now is only 15 min away. She want to do test on my good ear but I want get ci on my worse ear she doesn't want do test on that ear I don't see the point of that can't I just get hearing aid on good ear and get ci on other one sheesh
* she have my audiogram from 5 months ago by other audiologist who offer me ci when we found out I lost at least 45 decibel of hearing (you know how its different in each frequency so 45 is minimum) so she used that to program oticon and my hearing in good ear is profound plus I want ci on my worse ear (110 decibel loss) and she didn't want to test that one it doesn't makes sensesOk I emailed my surgeon's assisstant about it she told me its ok to do that because she will call and talk to my insurance company for approval right after she pick date and if they didn't approve before the surgery date just delay it and also my hearing test depends on my surgery too so guess its ok as long they get what is needed before surgery happens and she also will forward my email about why hearing aid on only right side not both so we'll see what they said. I wonder what's do they really meant by benefit from hearing aid? Like just simply hear loud enough to hear evironment sound or just the speech discrimination test and sentence recognization if scored whatever is correct?

RESPONSE from ALLDEAF users (thanks for your help!)
* They'd want to know how well you can discriminate speech. I was able to hear a lot of environmental sounds but I got 0 on speech discrimination.
* Yeah that's right. On the ear that I just had implanted, I got 20% speech discrimination without visual cues with my hearing aid. On my first ear, I got 0% with the hearing aid and now have 80-90% with the CI.I believe most centres look for something less than in the range of 40% - 60% speech discrimination. If you are getting good speech discrimination with hearing aids without visual cues, you will likely get turned down by insurance companies.

result of my CT scan is....

its NORMAL! Yay! its huge relief to see my left ear have everything in there nothing missing cuz i want to get this one implanted ofc my right ear is totally normal too :-) one more step to go to get confirmation of my candidacy then scheduled for surgery :-D and i will know on 11th of september then 2 weeks later i meet again to schedule for surgery im so excited!

Finally

My CT scan appointment is tomorrow, finally!!! Wish me luck hope the doctor tell me something just anything so I know whats going on or one tiny bit of good new. I been waiting too long to go by longer without knowing anything at all I hope he said something like "hi amy the result of CT scan is your cochlear look pretty healthy so see you after your hearing trial completes" somehting like that.
I will update tomorrow after the appointment to let you guys know what's up.