ssi hearing test

oh yeah... I got a letter from the SSI office from Cheyenne yesterday..... I have to do a hearing test in Jan. before they can go further with the process or whatever... I dunno.... no biggie. I've done so many hearing tests, I kinda know what happens haha. whatever!

meningitis awareness

Garrett might help me out with the Meningitis Awareness project too! SWEET! He had viral meningitis himself when he was 2 or 3, and lost hearing in one ear. It'd be cool to have him helping with the project. We both have experienced meningitis, so we can share our experiences (though we may not remember anything), and inform people of how dangerous the disease is and of the effects it causes and all. sfhsfsjkf I'm excited about this project....... We're gonna get people informed!
As someone in the Meningitis Angels group says, "Spread the word, not the disease."

academic bowl waiting list

Got an email from Tony.. Turns out the Wyoming team for the Western Regional Academic Bowl is #17 on the list...... which means in order to go and compete, another team has to drop out... I HOPE WE GO! I wanna go SO badly!

gotta love mail!

I got my Meningitis Awareness ribbon... :) and a CD containing pictures from the June 2003 Cochlear Kids Camp, which I volunteered at. YAAAAAAAAAAY! haha. I got good stuff in the mail!

stopped by deaf school. Had a NICE chat with Ruth, we chatted about dogs, academic bowl and whatnot. Sarah approached me, telling me Meredith wanted some info from me for the Western Regional Academic Bowl applications and yeah. Then asked if I would be willing to write an article about last year's academic bowl for the newsletter. I said SURE! Ruth said I should also put the article in the Star Lane newsletter, and i was like yeah that's a good idea! hehe

hearing more?

I think I'm hearing a bit more than usual with the new programming on my HA. I mean, everything is MUCH louder, and I seem to be picking up a bit more than usual. And Jo noticed that I can figure out where sound is coming from better. haha. THANKS SHANE!

adjustments

I went to the clinic center to see Shane, the audiologist. I signed in and all. Waited and waited and waited. My appointment was 11:00 and I didn't see Shane until like 11:20ish. Someone else was in with him, someone I KNOW! This guy used to be the janitor for the deaf school.
Anyway, turns out Shane's office had moved! yeah. and he's now using the Dell Ispirion 2560 or whatever the numbers are, notebook for programming hearing aids instead of the Dell desktop. Interesting yes. He got my hearing aid hooked up to the notebook, then looked at the tubing. He asked "how old is this tubing?" and I just shrugged haha. He changed it quickly, and we got to reprogramming. At first EVERYTHING was messed up and too damn quiet. So Shane went over to the desktop, printed off some stuff from my files that are still on that comp, then put them into the notebook. He kept messing with the volume and all, and finally we got somewhere. Everything's a bit louder, and basically, the volume for my hearing aid, according to the program on the notebook, is maxed out or whatever. HAH! But hopefully I can hear the emergency vehicles as I drive now. Crazy!

meningitis and deafness

Meningitis is an inflammation of the membrane(called the meninges) that surrounds the brain and the spinal column. Meningitis itself doesn't cause deafness, but since the brain is so close to the ears, sometimes the inflammation of the meninges can cause the inner ear to become inflamed also, and this can result in deafness.

well what do ya know? FINALLY I learned exactly how meningitis causes deafness! Ever since I did a project on meningitis in 7th grade, I never really understood exactly how it could cause deafness, and now I do! YAY! I learned something new about ME!

I stopped by the deaf school to return the Twins cochlear implant video tape, latest issue of Hearing Health magazine and a couple of books to the library there. Sherry was there, we talked a bit. Talked with Tom the audiologist, asking if I should go to my hearing aid audiologist dude Shane about getting my hearing aid adjusted so that I can HEAR the emergency vehicles coming while I'm driving. I don;'t hear them when driving unless the vehicle's like 3-5 feet away, and that's bad.
Went to go see Shane during lunch hour, but he's out of town. So the secretary and I set up an appointment for Monday at 11 to see him.

SSDI denied

Got letter from Social Security Administration office.. Disability Insurance Coverage thingy DENIED! Course that was to be expected as I haven't been working long enough. Still waiting to hear on the other one, the usual SSI crap I think?

I scored a 62% on the "How deaf are you?" Quizie! What about you?

WYHI!

WYHI on Friday! NO SCHOOL FOR ME! YAHOO! sure is nice to be a hearing-impaired student in Wyoming.... and being able to attend WYHI... gets me outta school! And Momma's gonna take a lunch hour that day from work, come to WYHI and talk with Angela about the cochlear implant business. Angela had her surgery for the CI in late May, got "turned on" sometimes in late June/early July.. somewhere around there... Hopefully Angela will be of some help to my mom. And I wanna chat with Angela about the CI myself too. I seriously do want one.

Course, I need to try applying for SSI too.. need to talk to mom about that some more. She told me she was waiting until I turned 18 to try the SSI thing cause they might help pay for at least PART of the CI process or whatever.. I dunno. Maybe we'll discuss cochlear implants again tonight... hmm...

CNI Cochlear Kids Camp

I'm HOME! YES! I so missed home.. I missed my momma, Little, Mouse, giving Mouse her mohawks every morning, sleeping in MY bed, the computer, the life at home, etc. The Cochlear Kids Camp was a lot of fun and a wonderful experience! So happy I went! Snow Mountain Ranch is a beautiful place, HUGE and open, but beautiful. WOW!

I chatted with various people who have implants, and they shared their experiences with me. I saw little kids, kids, adults, and teenagers with implants! It was pretty cool. I learned more of the 3 different devices, and got some more information packets... Pretty interesting stuff. and MAN I was happy to hear that the MicroLink FM system works with all 3 devices! So now I know I don't have to get a whole new FM system for the implant if I had one. SWEEEEEEEEET!

There was this 3 year old girl, Bailee... oh she is so cute! She uses signs to communicate, so of course I watched her most of the time (I was assigned to the 3-year-old group). She just really likes me, and she's just so cute and tiny and sweet! She's like Asian or something like that, and she was adopted. But still very cute.

I got to meet Allison Biever! She's one of the audiologists at the CNI Rocky Mountain Cochlear Implant Center in Colorado, and I was really happy to meet her face to face. And we actually talked of stuff that we probably wouldn't have in email! And Miss America 1995 Heather Whitestone was there! I met her and got to talk with her a bit. Even got her autographs and a picture with her! Very cool. Heather is such a very nice person. And I got to talk with a guy (I think he's a senior in high school now) who has had his implant for about 2 years, and he told me of his experiences and all. He loves his device, and is very happy with his decision. And he encouraged me to go for it when I knew for sure if I'm a candidate. He seemed to be a pretty nice guy.

And Allison did mention that if I wanted the left ear implanted, that I should start wearing a hearing aid in the left ear again, just to keep the auditory nerves stimulated. Made sense to me! So now I need to have an earmold made for the left ear so I can start wearing a hearing aid in the left again. She said it didn't matter if I could hear or not, it's a good idea to keep the nerves stimulated and that sort of thing. If the nerves were not stimulated, then chances of the implant being a success probably wouldn't be too good. And I want the implant to be a success for me, so I'm going to do whatever I can. I'm happy she shared that advice with me. I would have never gotten that from her in email I don't think!

Overall, this whole thing was just plain AWESOME! And I would definitely do this again if I had the chance! So fun, cool, a really neat experience. I'll try to get some pictures posted on the Deaf Wyoming site.

I was in the chatroom at hearingexchange.com. Very interesting place! We discussed cochlear implants, hearing loss, blah blah blah blah blah. Anything related to hearing loss. It was pretty cool. I really enjoyed it!

OOO and I got a response from the CNI in Colorado! I was given a phone number so I can call CNI to set up an evaluation appointment, and to ask any questions that I may have. Of course, I printed out the email so I can share it with my mom. I send another email with more questions so yeah. Heh heh heh heh! It'd be WONDERFUL if I could get the implant within the next year. It'd be neat. Especially since we are doing a problem on cochlear implants and deafness next year at SLC for our senior year (I CREATED THAT PROBLEM!).

when?

When would be a good time for me to get the CI? My senior year (next year basically) or after I graduate from high school?

I'm trying to decide that. I would LOVE to get implanted my senior year... but there's a LOT of work involved, and a lot of traveling to Boys Town too. I'm just not too sure right now. I'm still doing a lot of thinking and need to discuss this with my mom some more.

I guess I'll wait until after I've been evaluated to know for sure if I'm a candidate. Then I'll decide then I suppose.

Boystown

Hi Meghan,
The evaluations would need to be set up at Boys Town. We should be able to
schedule everything in one day. It is a full day of evaluations that are
scheduled. We can schedule your CT scan to be completed locally, and then
the results can be sent to Dr. Harker for review. We have other patients
from Wyoming, so that is not a problem.

Keep in mind that getting a cochlear implant is more than just the surgery.
It typically involves approximately 8-10 visits to the implant center during
the first year and at least once annually for the rest of your life, as long
as you are using the device. Below is the typical follow-up schedule to give
you a better idea of the follow-up required.

Trip 1: Pre-Implant Evaluation
Trip 2: Surgery (Involves 3-4 day stay in Omaha; overnight stay in
hospital)
Trip 3: Activation (1 month later; 2 day stay in Omaha) Cochlear implant
activation (2-2 hour appointments on consecutive days),
x-rays, follow-up exam by doctor
Trip 4: (1 month post-activation) programming and physician visit
Trip 5: (3 month post-activation) programming
Trip 6: (6 month post-activation) programming
Trip 7: (9 month post-activation) programming
Trip 8: (1 year post-activation) programming
At least annually thereafter

Frequent follow-up during the first year, especially during the first 6
months is very important to make sure that stimulation levels are adjusted to
optimize implant performance.

As far as your questions regarding right ear versus left ear. Audiological
candidacy is severe to profound hearing loss or poorer in both ears. Based
on that, it sounds like you qualify. We will perform speech perception
testing at your visit to make sure that you fall within the candidacy
criteria for implantation. Of patients who have enough residual hearing to
use a hearing aid in one ear, they usually continue to do so after
implantation. Usually ear choice is up to the patient unless there are
anatomical anomalies that would cause a complication with electrode
insertion. In that situation, the physician would let you know why one ear
is preferred over the other. Most of the time, it is the patient's
preference.

After testing and evaluation, we will be able to better answer these
questions as they specifically relate to your situation. There are always
factors that have to be considered based on each individual who is seeking
implantation. Sometimes patients do not always meet all of the candidacy
criteria, but are judged to be good candidates based on other factors. We
assess each person on an individual basis.



DUDE! that's a lot of stuff to do in a year.. Meh I knew it'd take a while for everything to happen in the whole cochlear implant process... that's a lot of traveling to Boys Town if I do all this within the next year!

and I'm a SENIOR in high school in the fall! GAH! I don't wanna miss much school due to this.. and I'm sure my mom can't afford to take much time off from work just to drive me to Boys Town and what not.

Maybe we should wait until AFTER I graduate and we both move to Nebraska... or at least wait until after I graduate to get going with the whole CI process... WOW!

But I still can't wait either!!!!!

I GOT THE INFO PACKET FROM BIONIC EAR! lots of info on the Clarion and Auria cochlear implant from that company! the Auria one is sooo frickin' cool! Course I'm not gonna choose an implant based on its looks. I want a cochlear implant that works and ...... yeah! Help me hear, and understand what's going on (after I get used to the implant and learning all the sounds again of course). Hmmmmmmm! I'm excited about this yes...

And my dad's supporting whichever decision I make about the CI. He says that if I want one, he's all for it and will help to find a way to pay for it all. I did forward him the email that I got from BoysTown with some information on CI's being not a hearing device but a prosthesis (or whatever it is) and that most insurances should cover this. err yeah.. okay.....

WHOA! DUDE! http://www.captain3d.com/temp/auria.htm That webpage is of the newer cochlear implant Auria by Bionic Ears! They're such cool looking CI's! I WANT ONE! Of course, I need to get some more info on it! I'm trying to decide if I want to go with Nucleus, or Clarion/Auria... tough decisions! Am still awaiting information from the Clarion company, as well as Boys Town.

And... My hearing aid is louder now.. Shane fixed the volume on it yesterday.... Only problem is that when I plug my FM transmitter into my CD player, and try listening to the music with that, I don't hear anything! The FM works alone, but when plugged in, it just won't work... and who knows why! Shane told me to come back next Wednesday during my lunch hour as someone from the Phonak company will be at the clinic. So he/she should be of some help figuring out why my hearing aid is not picking up stuff from the CD player. *sighs* it's a whole new hearing aid AND fm system too! You'd think everything would be working and all.. but noooo lmao AI YI! I'm going crazy.

I WANT A COCHLEAR IMPLANT! I've been doing some more research online yesterday, and even tried to do some research on insurance companies... someone in the Deaf community on LJ mentioned SSI... hmm.... Will keep researching... I think I know which brand of CI I want... Clarion.... But I'm still doing some research on Clarion, Nucleus, and Med-El. Yep! I've requested some information on the Clarion implant from the website so we should be getting some info in the mail hopefully soon!

CI Kids Camp

I just found out I can be a volunteer for the Cochlear Implant camp thingy for kids/teens with CIs that's in June! And it'll be treated as a FIELD TRIP for school rather than missing school.. This is gonna be soo much fun!

My interpreter Jo volunteered to be an interpreter, and her best friend (who used to be my teacher back during the deaf school years) is also going. We're gonna share a cabin, they get 1 bedroom and I get the other room to myself. Oh yeah it'll be fun and a great experience!

I'll be able to talk to others about their experiences, get some ideas for myself, and even do some research =P This would be a good opportunity for me to gather up some ideas like from the CI specialists that will be there for the deaf/cochlear implant problem I created for school. WE BETTER BE DOING THIS PROBLEM NEXT YEAR as I really wanna do it before I graduate!!!!! lol

HEATHER WHITESTONE's a featured speaker at the camp in June! This is gonna ROCK! YEAH! I'm now excited about this!

audiologist on CI, CI Kids Camp

oh yeah! while at the Alpine Hearing Center, the dude there (I never did catch his name lmao) said that he took a class on cochlear implants about 5 months ago, and he wants to work with the Denver CI specialists and see if he can like.. fix any problems with the CI's or make adjustments to them for people that live around here that have CI's (which is very few) so that they wouldn't have to drive ALLLLL the way to Denver to get it taken cared of. My mom asked if he knew anything about CI's as I do want one for myself. One thing he said is that the criteria for being a candidate has definitely decreased as the CI really does help and work for a lot of people or whatever.... so I could be a candidate!!!! My mom and I just need to get going and meet with specialists and even contact the DVR and see if they'd be willing to help us with the fundings for the CI.

Another thing!!!!!!! Theres a Cochlear Implant camp for kids/teens who have CI's. Their families can attend it too, and it's like a 5 day camp or whatever. My interpreter's alreadt signed up to be a volunteer interpreter... Problem is, since we had 2 snow days last week, the school days have been extended to June 9th or 10th.. which is a problem. The person in charge of the deaf education department or whatever, she probably wouldn't let my interpreter go because of the extended school days. So! This morning Jo told me about the camp, and thought that it might be possible that I could be a volunteer or something like that, and go with her! Then it would be for sure that she could go! I think it'd be a wonderful experience! That way I can meet many others who have CI's and ask them about the CIs and stuff like that. Heather Whitestone is a featured speaker at this camp in June too, as she had gotten her cochlear implant just last year so she can hear her kids. My mom could go too if she could be a volunteer somewhere.. that way she and I can talk with the specialists and all.... find out what we're supposed to do and so on. It'd be really cool I think! I hope I can be a volunteer!!!!!!

new mold new mold!

I had an earmold made TODAY instead of MONDAY!!!! THANK GOODNESS for Alpine! We now have an Alpine Hearing Center right here in town... so we don't haffta drive to the University of Wyoming for new hearing aids or repairs to my equipment or whatnot! It can all be done HERE! and the guy at the Alpine here, he says he'd make my mold today and have it for me by Monday or Tuesday! and when I have my molds made through the school district, it takes 10 days to the mold from the company! And... I think the guy who made my mold will be better than the school district audiologist Linda.... The guy says my earmold should be going into my ear more, but it's not cause it seems like someone cuts off the tip of the earmold that goes into the ear canal or whatever. BUT HEY! I'm getting my new earmold MONDAY or TUESDAY! ain't that grand?!?!?! I'm excited!

AAANNNNDDDD!!!! he also said while sending out the mold of my ear to the company to have the earmold made, he'd also send in the damaged cord for my personal FM system and get a replacement. He also said he'd order a few more of the cords so he'd have them in his office available for me! He doesn't have much at his office right now as he just opened the Alpine Hearing Center a few months ago and doesn't exactly know what his customers need. I'm happy!!!!

lots of rambling

Wow! Today's like the FIRST time I ever went through the entire school day being completely DEAF! No hearing aids, no FM systems.. Just an interpreter there interpreting for me so I knew what was going on and such. It was kind of nice!

I didn't wear my hearing aid as I am still awaiting to have my new earmold be made (we had to reschedule my appointment to the 31st of this month due to our Snow Days last week hmph). The earmold don't fit my ear as well anymore, and is loose. So I keep hearing squeaks all day, and I am SICK of listening to the squeaks. Sure is nice to know I have the option to just go through the day being completely deaf. And not once did I get a headache as I sometimes do when I do have my hearing aid on... Must be because I didn't have to rely on my hearing throughout the day AND watching the interpreting.... Anyway it was pretty interesting. I may do it again as it'll be a while before I even get my new mold.

I still am considering a CI for myself. Just not sure if my mom wants me to get one. I don't know.. We were talking the other day, and it seemed like she didn't care about the CI, and that she just doesn't want to do anything about it. It just seemed that way to me. Maybe it's because she has no idea where to go now. We have video tapes on CI, we have the audiologist we can ask, my interpreter's best friend has contact with CI specialists from Denver and that sort of thing. I guess after finding out that my dad's insurance won't cover it, she gave up on it or something. I just plain do not know! This frustrates me a bit.

Anyway... Spreading deaf awareness is a good idea I think. People should know about deafness, and how deaf people do things. I mean, deaf people can do ANYTHING that hearing people can do! Drive, be doctors, ministers, TEACHERS, even be an INTERPRETER! I have an interpreter at school and she is deaf herself! BORN deaf too. I find it truly amazing that she can interpret and she has even less hearing than I do! But she benefits greatly from her hearing aids. I had to create a problem for my senior year for the school that I go to (it's a way for juniors to get in as seniors since this school is VERY different). I decided to do something with deafness, and decided.. hey why not look at the controversys with Cochlear Implants! a lot of Deaf people are very against CI's as they think hearing people are trying to FIX deaf people, or trying to ruin their culture. That way, the students at the school I go to will have some deaf awareness... I decided they should learn some signs, look into the anamoty (sp?) of the ear, find out how CI's and hearing aids work, look at audiogram and understand how soundwaves are measured and hearing loss is measured, the list goes on! My interpreter and I were talking the other day that we should plan for a DEAF DAY for when we actually do this problem at school.. Plug up everyone's ears and force them to use the signs they've learned to communicate and so on.

2003 Deaf Academic Bowl

The trip was fun and all, but man I sure missed home!

University High School won the western regional Academic Bowl. Colorado School for the Deaf and Blind came in 2nd, so both teams get to go to the National competition in May. Wow this was such a great experience and I'm definitely GLAD I went.


My interpreter Jo and I arrived in Cheyenne just in time, and met up with the rest of the team. The other team players besides me were Dawn, John, and Matt. The coaches are Mandi and Tony. Jo was the 3rd coach, and was to take over in case Tony had to leave. Anyway, we went for lunch then headed to Colorado Springs. We made it to Colo. Springs and drove around trying to find the school. We managed to find it and checked in. Got out cards that served as our keys, passes, blah blah blah blah; Gallaudet Academic Bowl t-shirts, pens, room assignments and stuff like that.

The boys were in Jones Hall and the girls in Argo Hall. Jo stayed at a motel. Dawn and I were roommates. Mandi and the coach for the Montana School for the Deaf and Blind were room mates. Matt and John had to share a room with 5 other boys, and Tony shared with 3 other coaches.

We went out for dinner (Matt was about to talk to me when he pulled his card out of his pocket and spilled an entire tin of MINTS onto the floor, which he picked up HAHA!) then went to the gym. There I saw my friend that I practically grew up with, Will! We greeted each other and talked for a while. Then everyone went upstaird to the old gym. The coaches left for a meeting, and the students stayed in the gym to get to know each other and to do some activities. I didn't participate in some of the activities as I had hurt my wrist getting Jo's suitcase out of the back of the van at the motel! I may have sprained it, or even broke it a bit!

Next day, the first day of the competitions! We were given a tour of the campus so we knew where the 4 sites for the matches were and just so we knew our way around.

1st Match: Thursday; 1:30 PM, New Gym; Wyo vs. South Hills High School; 6-28
2nd Match: Thursday; 4:00 PM, Adams Building; Wyo vs. Madison High School; 32-30
3rd Match: Thursday; 7:45 PM, Lions Building; Wyo vs. Phoenix Day School for the Deaf; 29-35
4th Match: Friday; 2:00 PM, Gottleib Building; Wyo vs. California School for the Deaf, Freemont; 6-58
5th Match: Friday; 4:30 PM, Adams Building; Wyo vs. Arizona School for the Deaf and Blind; 17-19 (WE HAD A TIE AT THE END OF 3RD ROUND, 17-17, WENT THROUGH 16 QUESTIONS BEFORE ARIZONA WON)
6th Match: Saturday; 8:00 AM. Gottleib Building; Wyo vs. Spanaway Lake High School; 10-9
7th Match: Saturday; 10:30 AM, Adams Building; Wyo vs. University High School; 10-75

University High School won 1st place, Colorado School for the Deaf won 2nd place. Both teams are going to the national competition in May.


This was a great experience. Not only did I get to see THREE of my old friends, I also made new friends and really felt at ease in the deaf community.... I didn't feel left out or anything like that. It was just great. I'm definitely doing this again next year!

2004 competition will be held at Riverside, California School for the Deaf.
2005 competition will be held at Arizona School for the Deaf and Blind.

excited for Academic Bowl

We leave for Colorado Springs on Wednesday morning! *gets all excited* I'm very excited about this trip! Definitely looking forward to competing in the Academic Bowl competition! OH YEAH!

And I've decided on a title for my book. It's "My Silent Hearing World". I've submitted what I have so far to Young Authors but it didn't make it to the district level damn it! I was hoping it would go to district level. PFFT!

The Academic Bowl practice session on Thursday afternoon went OKAY. The Wen Video system was screwed at NCHS, I THINK. Most of the time we couldn't even see Mandi on the TV and quite a few times we've gotten disconnected from the network. It was insane. And to make everything worse, I had such a horrible headache that I couldn't even concentrate! It could have been a migraine.. probably was..

hearing test, teaching signs

Hum bah! I have a hearing test set up for Monday at 11:00.. PFFT! I hate hearing tests! I hate sitting in that sound-proof booth with those huge headphones on my head, trying to figure out if I'm actually hearing the sounds from the headphones or if they're just sounds I'm hearing in my mind!

My mom and I are also going to talk to the audiologist about the possibility of getting a CI done for my left ear. Mom and I got to talking about it again last night, and I kept telling her I was serious, so when she called the Audiology department to set upt he Hearing Test appointment, she asked if we could discuss CI too, which we will.

And another thing... I FINALLY can teach this disabled student I work with at school more signs, and help her improve her signing skills. My interpreter Jo and I started teaching her signs LAST year, hoping it would help her communicate more (seeing how she can't talk with her voice, she can hum and scream, but can't talk, and she can't use a talking board very well since she doesn't see the pictures on the screen). Boy did she pick up on the signs quizkly last year.
All semester last semester, I couldn't work with her on her signs since the class went out into the community or did some cooking. But this semester, we have the time to work on signs during 4th block/period. I'm so happy to be able to continue working with her! It's the 2nd day I've worked with her on her signs, and she's doing real well. I'm going to start working on the signs that she started learning last year but never got the hang of (seeing how it was just about the end of the school year). I'm going to make sure she knows how to sign LOVE, MOTHER, responses to "How are you" and stuff like that. She's doing really well with book, ball, juice, mirror, finish, help, drink, please/happy, more, shoe, bubbles, etc.........
I'm telling you! Once we started teaching her some signs last year and she started using them, her frustration levels definitely decreased. She wasn't screaming or mad all the time, and she was able to communicate a little more than usual. It was just wonderful. So I'm truly happy to be able to work with her on her signing skills once again. And I know my interpreter Jo will be extremely happy to hear about this once I tell her on Monday morning!