Cochlear ~~ Advanced Bionics
~~NIKE~~3M~~BLACKBERRY~~KRAFT~~LEE~~
How do we make choices? What is it that appeals to us as individuals? How do we choose one over the other? This has been one of the hardest choices we have ever made! Of course one company is going to tell you they are the best....and they are going to challenge you what the other company has to offer! They are going to make "theirs" look the best!
What it comes to is did we as parents do they very best, given at this moment and at this time? Did we, I truly believe we did. I have no doubt that NO MATTER what implant we choose for Aubrey, she will do AMAZING. She holds the power, they drive to make this all happen and she will come out with flying colors because SHE is a fighter, she desires, she wants....We as her family will stand by her, support her and love her until the day we die!
Friday, January 21, 2011
Wednesday, January 19, 2011
Tuesday, January 18, 2011
~~a decision has been made~~
Wow, a whirlwind of a few days...emotions high and today I am feeling okay. After a night of pure and simple tears, agony and pain...I awoke today feeling like phew glad yesterday is DONE! Everything is going on right now, Frank has started school, his boss has sent him to school to get his welding certificate. So two days a week he is gone from 630 Am to 11PM~~But he is so excited and feels so very proud of himself! I am too I will admit, Frank is a amazing man, who has gown SO much in the 15 years we have been married. Wow, that is a understatement....he has really grown up and become a AWESOME man...so grateful we share our life together!
~Well where to start....As i would assume everyone knows that we are awaiting a cochlear implant for our 13 year old. It has been such a process, painful...lots of tears lots of questions, lots of unknown and a overwhelming butt load of fear! I think back through the 13 years, well actually 10 because she was not diagnosed until 18 months....but I think of the crew of audiologists, doctors, people with name tags:), friends...tests, ear molds, surgeries and ENT'S I come out smiling. Trust me there were moments, days and hours of screaming matches, conversations and research, BUT I would NEVER change a moment. I would maybe take back a few things...or change my attitude towards other things...but change the path, NOPE, NADA NO WAY. The team has changed over the years....some have stayed, some have been fired and some we don't use their services any longer....but all in all I am thankful to be where I am today. With that being said
~Frank, Aubrey and myself...along with some other voices:) have helped us make a choice! We are no longer waiting for ADVANCED BIONICS but in fact choosing COCHLEAR5, There is to much of a loss if we wait it out. Aubrey is a growing girl..her brain is still forming and she has a lot to "hear" I feel that waiting is a selfish choice. As AubZ said when I told pointed out HER ski season was just about to begin and she just started volleyball...."mom, there is always next year, I want to hear, I want to do this now" so here we go....buckle your seat belts because things are going to happen now that are going to be life changing....HUGE!! Where to begin, and that is I made the call today to Denver Children's Hospital...our audiologist and said...lets go, so i sit and wait and pack:) awaiting a phone call back! I can back up and say...Jennifer Kohlb our audiologist has been truly AMAZING. Now we have seen several, and I mean several different audies...and this one is a GEM:)
So as I said....BUCKLE UP....this is where I am going to share my life, our story and our gains. I would love you to be apart of our journey...NEVER hesitate advice or words of wisdom...thanks for reading:)
Wow, a whirlwind of a few days...emotions high and today I am feeling okay. After a night of pure and simple tears, agony and pain...I awoke today feeling like phew glad yesterday is DONE! Everything is going on right now, Frank has started school, his boss has sent him to school to get his welding certificate. So two days a week he is gone from 630 Am to 11PM~~But he is so excited and feels so very proud of himself! I am too I will admit, Frank is a amazing man, who has gown SO much in the 15 years we have been married. Wow, that is a understatement....he has really grown up and become a AWESOME man...so grateful we share our life together!
~Well where to start....As i would assume everyone knows that we are awaiting a cochlear implant for our 13 year old. It has been such a process, painful...lots of tears lots of questions, lots of unknown and a overwhelming butt load of fear! I think back through the 13 years, well actually 10 because she was not diagnosed until 18 months....but I think of the crew of audiologists, doctors, people with name tags:), friends...tests, ear molds, surgeries and ENT'S I come out smiling. Trust me there were moments, days and hours of screaming matches, conversations and research, BUT I would NEVER change a moment. I would maybe take back a few things...or change my attitude towards other things...but change the path, NOPE, NADA NO WAY. The team has changed over the years....some have stayed, some have been fired and some we don't use their services any longer....but all in all I am thankful to be where I am today. With that being said
~Frank, Aubrey and myself...along with some other voices:) have helped us make a choice! We are no longer waiting for ADVANCED BIONICS but in fact choosing COCHLEAR5, There is to much of a loss if we wait it out. Aubrey is a growing girl..her brain is still forming and she has a lot to "hear" I feel that waiting is a selfish choice. As AubZ said when I told pointed out HER ski season was just about to begin and she just started volleyball...."mom, there is always next year, I want to hear, I want to do this now" so here we go....buckle your seat belts because things are going to happen now that are going to be life changing....HUGE!! Where to begin, and that is I made the call today to Denver Children's Hospital...our audiologist and said...lets go, so i sit and wait and pack:) awaiting a phone call back! I can back up and say...Jennifer Kohlb our audiologist has been truly AMAZING. Now we have seen several, and I mean several different audies...and this one is a GEM:)
So as I said....BUCKLE UP....this is where I am going to share my life, our story and our gains. I would love you to be apart of our journey...NEVER hesitate advice or words of wisdom...thanks for reading:)
Monday, January 17, 2011
Already shaping up to be a NOT so good day and it is 8:10 in the morning, and a Monday at that! The ice is so thick here it took forever to get the ice off my windows, a tough job and YES, my elbows were tired after that job!
This was the weekend that Madie spent at MSDB, the second weekend of every month is hers to be with her friends and to give Frank and I a entire weekend to breath:) Public schools are off today...MSDB is going strong! When I went to pick Madeline up yesterday she was having such a great time! Her and the kids there are really becoming great buddies...so of course she wanted to stay. With their being school I had to go early this morning to pick her up! But the nice thing was Aubz stayed here with Frank and I so....we got some AUBREY time alone:) It was nice.
This Monday morning was already shaping up to be YUCKY, the ice the long night and the packing and packing that needs to be done (yes, we are moving) I had to drop one hearing aid off at the audie...Aubrey is just not getting power from it. The other aid is LOST. YUP, that is right. Madie, just has NO clue! I asked her in the car if her hearing aid was on....she says "no it's at home" I immediately freak out! inside I am screaming, this is such a routine for us and i am at a loss of how to stop it! We have a "bed" for it but obviously that isnt working. Thursday was the last known day she had it in her ear. Heck i assume that she had it yesterday, but she informed me that was not the case. WHY, OH WHY does this happen? She has NO concept and I am shaking inside! Madie is 7....and a madie 7! we are suppose to work as a team with this aid but i think i am failing, I cannot and will not make her assume full responsibility but we need some help in this department. ANY and ALL ideas would be greatly appreciated
So then I drop Aubrey's hearing aid off and leave there feeling more then angry. I go there because i am NOT a audiologist, support and ideas come from them. Right? or am i wrong to think that? All I know is PHONIAK gave us a time limit on this new NAUDIA aid and that time limit is done on FEB 1st. It needs to be back in their office. We have already, supposidly done a longer contract, so it needs to go back. BUT here is where I am lost. Montana Medicaid. Will they shell out a huge sum of money for that left ear PHONIAK and then in a few months shell out 30 grand for a CI on that right ear? I have heard so many different things. I could call but its not a written kind of thing. I am not sure anyone has the answers. Then sending it back, I guess I assumed that the audiologist would help me get that done, but they look at me like i am asking them to give me 10 pounds of gold!
I am so scattered in witting this....I am searching for a aid and Fielding calls...IU will write more later!
This was the weekend that Madie spent at MSDB, the second weekend of every month is hers to be with her friends and to give Frank and I a entire weekend to breath:) Public schools are off today...MSDB is going strong! When I went to pick Madeline up yesterday she was having such a great time! Her and the kids there are really becoming great buddies...so of course she wanted to stay. With their being school I had to go early this morning to pick her up! But the nice thing was Aubz stayed here with Frank and I so....we got some AUBREY time alone:) It was nice.
This Monday morning was already shaping up to be YUCKY, the ice the long night and the packing and packing that needs to be done (yes, we are moving) I had to drop one hearing aid off at the audie...Aubrey is just not getting power from it. The other aid is LOST. YUP, that is right. Madie, just has NO clue! I asked her in the car if her hearing aid was on....she says "no it's at home" I immediately freak out! inside I am screaming, this is such a routine for us and i am at a loss of how to stop it! We have a "bed" for it but obviously that isnt working. Thursday was the last known day she had it in her ear. Heck i assume that she had it yesterday, but she informed me that was not the case. WHY, OH WHY does this happen? She has NO concept and I am shaking inside! Madie is 7....and a madie 7! we are suppose to work as a team with this aid but i think i am failing, I cannot and will not make her assume full responsibility but we need some help in this department. ANY and ALL ideas would be greatly appreciated
So then I drop Aubrey's hearing aid off and leave there feeling more then angry. I go there because i am NOT a audiologist, support and ideas come from them. Right? or am i wrong to think that? All I know is PHONIAK gave us a time limit on this new NAUDIA aid and that time limit is done on FEB 1st. It needs to be back in their office. We have already, supposidly done a longer contract, so it needs to go back. BUT here is where I am lost. Montana Medicaid. Will they shell out a huge sum of money for that left ear PHONIAK and then in a few months shell out 30 grand for a CI on that right ear? I have heard so many different things. I could call but its not a written kind of thing. I am not sure anyone has the answers. Then sending it back, I guess I assumed that the audiologist would help me get that done, but they look at me like i am asking them to give me 10 pounds of gold!
I am so scattered in witting this....I am searching for a aid and Fielding calls...IU will write more later!
Wednesday, January 12, 2011
~~I am so ready to CHOKE someone~~
So first let me explain...We as a family decide we are going to go OUT for dinner, all 4 of us...we needed to take Aubrey to get knee pads for volleyball so after that we thought we would get some dinner. It has been a while since all of us have been anywhere together...Aubrey is always at the cottage, volleyball, expressions of silence of off with her buddy T:) So we thought Yeah some time together!
We decide to go to BOSTON'S...(HORRIBLE IDEA) Walking into horrible loud music, TVs going, not just one or two, they had at least 5 HUGE TVS...a zillion people in the bar...then you had all the people in the restaurant. I could already feel the tension and NO ONE had even looked at the menu. Aubrey threw her hearing aid on the table...Madie turned hers off...and I was searching for the nearest BEER list! The waitress comes over and immediately asked her to turn down the music...she even had to lean into me to catch my words...15 minutes later she came to take our drink order, she of course asks Aubrey first...and Aubrey says huh, what? I then sign to her asking her if she wanted pop, milk water or what..Then we have to go over what kind of soda they serve....Finally get that down. Then we move to Madeline, pop, soda, water....and of course she said she didn't know what kind of pop they had to we had to AGAIN go over what the choice was...Then Frank, he made it easy...NOW it was my turn...OHH thank goodness, "I would like vodka/cran DOUBLE from the bar" she says "can I see your ID..SERIOUSLY, lady I have two kids ...do I look 12? "forget it, I will have a diet coke with lemon" Ordering was IMPOSSIBLE, they were out of the soup...everyone wanted, then they had no more of the special..(which was spaghetti something that looked oooo so very yummy) so we had to pick from pictures and reading...I was so looking forward to going home to hide under my bed..ALONE~~
~~You see, restaurants are a pain in the butt! they are loud over stimulating and NOT hearing aid friendly! Part of my frustrations is....Frank, bless the mans heart. He loves his family more then life itself, but he just forgets to sign. As any father would do...he just forgets, and being a man, he struggles BIG TIME. But by the 5th huh, what??? I am about ready to blow. I am the mother, the one who takes care of everyone and so feel like I am letting down Aubz...I am trying to make EVERYTHING...EVERYONE work for her! I am trying to be super mom, and I am failing! So then after I try to nonchalantly say to frank "honey she needs the sign" he then tries and Madie corrects him...and he feels like a ass.. I am so overstimulated and irritaded I am ready to blow...Oh, I forgot to tell you...my sandwhich, the mayo tastes like old wine..NASTY GROSS, so i just decide to share with Aubrey.
I am not even in a space to explain today at the audilogist either...I am tired, cranky and ready to go turn off my brain! Will write more later:) or tomorrow
So first let me explain...We as a family decide we are going to go OUT for dinner, all 4 of us...we needed to take Aubrey to get knee pads for volleyball so after that we thought we would get some dinner. It has been a while since all of us have been anywhere together...Aubrey is always at the cottage, volleyball, expressions of silence of off with her buddy T:) So we thought Yeah some time together!
We decide to go to BOSTON'S...(HORRIBLE IDEA) Walking into horrible loud music, TVs going, not just one or two, they had at least 5 HUGE TVS...a zillion people in the bar...then you had all the people in the restaurant. I could already feel the tension and NO ONE had even looked at the menu. Aubrey threw her hearing aid on the table...Madie turned hers off...and I was searching for the nearest BEER list! The waitress comes over and immediately asked her to turn down the music...she even had to lean into me to catch my words...15 minutes later she came to take our drink order, she of course asks Aubrey first...and Aubrey says huh, what? I then sign to her asking her if she wanted pop, milk water or what..Then we have to go over what kind of soda they serve....Finally get that down. Then we move to Madeline, pop, soda, water....and of course she said she didn't know what kind of pop they had to we had to AGAIN go over what the choice was...Then Frank, he made it easy...NOW it was my turn...OHH thank goodness, "I would like vodka/cran DOUBLE from the bar" she says "can I see your ID..SERIOUSLY, lady I have two kids ...do I look 12? "forget it, I will have a diet coke with lemon" Ordering was IMPOSSIBLE, they were out of the soup...everyone wanted, then they had no more of the special..(which was spaghetti something that looked oooo so very yummy) so we had to pick from pictures and reading...I was so looking forward to going home to hide under my bed..ALONE~~
~~You see, restaurants are a pain in the butt! they are loud over stimulating and NOT hearing aid friendly! Part of my frustrations is....Frank, bless the mans heart. He loves his family more then life itself, but he just forgets to sign. As any father would do...he just forgets, and being a man, he struggles BIG TIME. But by the 5th huh, what??? I am about ready to blow. I am the mother, the one who takes care of everyone and so feel like I am letting down Aubz...I am trying to make EVERYTHING...EVERYONE work for her! I am trying to be super mom, and I am failing! So then after I try to nonchalantly say to frank "honey she needs the sign" he then tries and Madie corrects him...and he feels like a ass.. I am so overstimulated and irritaded I am ready to blow...Oh, I forgot to tell you...my sandwhich, the mayo tastes like old wine..NASTY GROSS, so i just decide to share with Aubrey.
I am not even in a space to explain today at the audilogist either...I am tired, cranky and ready to go turn off my brain! Will write more later:) or tomorrow
Monday, January 10, 2011
Good Monday Morning...
~~Phew made it through another weekend! As I sit and drink my Monday morning quad shot of coffee I figured it was time to write a update of the winans family!
Madie got her hearing aid back on Friday evening...YEAH, I was shocked at how quickly it came back from repair. In Missouola with a certin audie it was always two and a half three weeks out, ALWAYS! Whenever she has a day of school without her aid, Madie comes home expressing what a horrible day it was...it's so hard to keep up in the second grade world with half a ear:) This morning was a breeze~~the audiologists Secretary made Madie a special box for her aid at night...put a sticker on it and even another sticker with her name! yeah. I also learned that the dry aid kit is not something that we need to use EVERY NITE, it is more for summer or when she has been active and it needs a place to "breath" I was under the understanding that EVERY night NO MATTER what that is where it had to be! its amazing the different things you are told when you switch audiologists.
~~Aubz had a great weekend, last week her MP3 player finally died, she was absolutely LOST, so bummed out. Music is something that gets Aubrey through the day, it sooths her spirit. That is the one thing, well one of the things that has her the most upset with this loss of hearing. The music has slowly faded. It's interesting to see what she does so she can enjoy a song. We had gotten her the Taylor Swift CD for Christmas. Learning the music takes about three days for Aubrey. She will go online and get the words for the music play the song ...match everything up. YouTube has been instrumental, so many times there you can find the song you are looking for that someone has already signed. So she will watch listen and read to get it all down pat! For Aubrey, that is OK. She is used to it, and it is second nature for her. I sit back and think...WOW, what a AMAZING thing. do people realize what some do for pleasure? So anyway back to my story, we ended up buying Aubrey a IPOD, knowing, or so we have been told that the IPOD can directly hook to her implants (when that happens) and she can LISTEN to music in a whole different aspect! but also for now, she can still get something out of turning it up way loud doing her YouTube and enjoying a song! I watch her and take everything in .... and APPRECIATE so much deeper!
~~I keep looking at Advanced Bionics to see if the cochlear is available...daily I find myself looking at the website...ugh, I feel like a kiddo counting down the days till Christmas~~soon, soon soon.....
Hope everyone has a AWESOME Monday.
~~Phew made it through another weekend! As I sit and drink my Monday morning quad shot of coffee I figured it was time to write a update of the winans family!
Madie got her hearing aid back on Friday evening...YEAH, I was shocked at how quickly it came back from repair. In Missouola with a certin audie it was always two and a half three weeks out, ALWAYS! Whenever she has a day of school without her aid, Madie comes home expressing what a horrible day it was...it's so hard to keep up in the second grade world with half a ear:) This morning was a breeze~~the audiologists Secretary made Madie a special box for her aid at night...put a sticker on it and even another sticker with her name! yeah. I also learned that the dry aid kit is not something that we need to use EVERY NITE, it is more for summer or when she has been active and it needs a place to "breath" I was under the understanding that EVERY night NO MATTER what that is where it had to be! its amazing the different things you are told when you switch audiologists.
~~Aubz had a great weekend, last week her MP3 player finally died, she was absolutely LOST, so bummed out. Music is something that gets Aubrey through the day, it sooths her spirit. That is the one thing, well one of the things that has her the most upset with this loss of hearing. The music has slowly faded. It's interesting to see what she does so she can enjoy a song. We had gotten her the Taylor Swift CD for Christmas. Learning the music takes about three days for Aubrey. She will go online and get the words for the music play the song ...match everything up. YouTube has been instrumental, so many times there you can find the song you are looking for that someone has already signed. So she will watch listen and read to get it all down pat! For Aubrey, that is OK. She is used to it, and it is second nature for her. I sit back and think...WOW, what a AMAZING thing. do people realize what some do for pleasure? So anyway back to my story, we ended up buying Aubrey a IPOD, knowing, or so we have been told that the IPOD can directly hook to her implants (when that happens) and she can LISTEN to music in a whole different aspect! but also for now, she can still get something out of turning it up way loud doing her YouTube and enjoying a song! I watch her and take everything in .... and APPRECIATE so much deeper!
~~I keep looking at Advanced Bionics to see if the cochlear is available...daily I find myself looking at the website...ugh, I feel like a kiddo counting down the days till Christmas~~soon, soon soon.....
Hope everyone has a AWESOME Monday.
Monday, January 3, 2011
I really really need to be better about posting. I have set this up for a place to me to vent but also I think it is so important for us as parents to be there for one another. For me to offer my advice or give you what I am doing....maybe something will help. My heartache is for a reason. I truly believe that. I have a tendency to be very loud and opinionated but it is for a reason. Trust me, walk a mile in my shoes....then you will understand! I have struggles just like you, I get mad, I scream just as loud! Trust me....we were put on this earth for a reason:)
~~So we had a appointment at the audiologist today......She wanted to check in and see how Madie was doing with her new hearing aid. Last month we got her a Naudia...and WOW, such a difference. Madie is so used to the power, the boost of loudness...and with this one it is taking some time to adapt but it is working more on clarity then loudness. All in all I think it is going to be great!
Our other issue was..... the cat got the hearing aid. I am so at a loss on how to help my kids be responsible hearing aid users:) We have the dry aid kit...we have the string...we are doing everything in MY power to make sure it is put to bed at night! I think I need to start a chart of some sorts...something to get Madie and really Aubrey too...to get them interested. I will say AubZ is way better then she was a few years ago. I think age has something to do with it....but Madie, ughhh. I know there are so many of us parents out there that have this same issue. Heck send me ideas...I would love to hear!
I made some phone calls today, looking for some bigger ticket items for a raffle or a spaghetti feed for Aubrey's benefit. Hoping someone out there will want to help me out with that. We have been blessed with people depositing money in the "benefit for Aubrey Winans account" which is so awesome. I just really feel that more can be done! So again if anyone has ideas<>
Thanks everyone for loving us....its not easy at times, I do know that. But it is important that we have your love and support! Everyone needs a friend!
~~So we had a appointment at the audiologist today......She wanted to check in and see how Madie was doing with her new hearing aid. Last month we got her a Naudia...and WOW, such a difference. Madie is so used to the power, the boost of loudness...and with this one it is taking some time to adapt but it is working more on clarity then loudness. All in all I think it is going to be great!
Our other issue was..... the cat got the hearing aid. I am so at a loss on how to help my kids be responsible hearing aid users:) We have the dry aid kit...we have the string...we are doing everything in MY power to make sure it is put to bed at night! I think I need to start a chart of some sorts...something to get Madie and really Aubrey too...to get them interested. I will say AubZ is way better then she was a few years ago. I think age has something to do with it....but Madie, ughhh. I know there are so many of us parents out there that have this same issue. Heck send me ideas...I would love to hear!
I made some phone calls today, looking for some bigger ticket items for a raffle or a spaghetti feed for Aubrey's benefit. Hoping someone out there will want to help me out with that. We have been blessed with people depositing money in the "benefit for Aubrey Winans account" which is so awesome. I just really feel that more can be done! So again if anyone has ideas<>
Thanks everyone for loving us....its not easy at times, I do know that. But it is important that we have your love and support! Everyone needs a friend!
Saturday, January 1, 2011
•°*”˜˜”*°•.¸☆ ★ ☆¸.•°*”˜˜”*°•.¸☆
╔╗╔╦══╦═╦═╦╗╔╗ ★ ★ ★ ೋღ❤ღೋ
║╚╝║══║═║═║╚╝║ ☆¸.•°*”˜˜”*°•.¸☆
║╔╗║╔╗║╔╣╔╩╗╔╝ ★ NEW YEAR ☆ 2011
╚╝╚╩╝╚╩╝╚╝═╚╝ ♥￥☆★☆★☆￥♥ ★☆
~~A new day, a new week a new month~~
This year is going to bring AMAZING things to our family! It definetly has been a really hard year...But what we have wanted for the past 2 years was to be in Great Falls with Aubrey, so be able to tuck Aubz in at night, I wanted to be able to hear about her day every day...I wanted to experince things daily with her....being in Missoula...I had to read about those things over text messages...or when i had a video phone call with her. So I am so thankful to be here, under on roof, togeher as a family! As hard as it has been to move to a new city, to leave friends behind...and to settle into a new enviroment it was worth it!
╔╗╔╦══╦═╦═╦╗╔╗ ★ ★ ★ ೋღ❤ღೋ
║╚╝║══║═║═║╚╝║ ☆¸.•°*”˜˜”*°•.¸☆
║╔╗║╔╗║╔╣╔╩╗╔╝ ★ NEW YEAR ☆ 2011
╚╝╚╩╝╚╩╝╚╝═╚╝ ♥￥☆★☆★☆￥♥ ★☆
~~A new day, a new week a new month~~
This year is going to bring AMAZING things to our family! It definetly has been a really hard year...But what we have wanted for the past 2 years was to be in Great Falls with Aubrey, so be able to tuck Aubz in at night, I wanted to be able to hear about her day every day...I wanted to experince things daily with her....being in Missoula...I had to read about those things over text messages...or when i had a video phone call with her. So I am so thankful to be here, under on roof, togeher as a family! As hard as it has been to move to a new city, to leave friends behind...and to settle into a new enviroment it was worth it!
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