We have a new sound to report:) because we live in a community with a army base every morning and night someone plays the taps....on the bugel its always nice to hear!!! Well Aubrey heard it for the first time in her life! I know i hear it from our house...when windows are open always.....we are about 5 blocks further out from the school.......but even at that the school is about 2 miles away!!!! YEAH AUBZ
Tuesday, September 20, 2011
Friday, September 16, 2011
Cochlear Limited is undertaking a voluntary recall of the unimplanted Cochlear Nucleus CI500 cochlear implant range.
While less than 1% of CI512 implants have failed since launch in 2009 , Cochlear has identified a recent increase in the number of Nucleus CI512 implant failures. In an abundance of caution and with our recipients in mind, Cochlear has issued a voluntary recall of the Nucleus CI500 range of cochlear implants while it further investigates the issue.
No implants outside the Cochlear Nucleus CI500 range are affected by this voluntary recall including Nucleus Freedom implants which remain available.
The Nucleus 5 external devices (Nucleus CP810 Sound Processor) and any previous generation sound processors are not affected by this recall.
It is important to note that all existing Nucleus CI512 implant recipients can continue to use their system as normal.
If a Nucleus CI512 failure occurs, the implant safely shuts down. In the event of a failure, recipients can be re-implanted with the Nucleus Freedom implant range which remains available. Nucleus Freedom is fully compatible with the Nucleus 5 Sound Processor System which is not affected by this recall.
For people considering a cochlear implant, Cochlear recommends the use of the Nucleus Freedom range of Cochlear implants which are fully compatible with the Nucleus 5 sound processor system. This combination of Nucleus Freedom and Nucleus 5 sound processor system does not sacrifice any of the performance benefits of the Nucleus 5 processor system.
For more than 25 years, cochlear implant reliability has been of paramount importance to Cochlear, and we remain committed to providing high quality, high reliable cochlear implant systems.
Good Morning:)
I am so excited to be back into the routine of school. It feels good! I will admit it is very busy for us, but busy children are happy children!! and that makes for a very happy mom:)
Aubrey and I had a conversation this morning about her new "mapping" for her implant and she said she "LOVES IT" she hears the whoosin sound that the toilet makes. She knew the toilet makes sounds, but she now hears the "woooSHHHING" sound. It is amazing what a little tweak can do! Honestly, she now can hear the SHHHHHH. WOW! AND the one complaint was the bell at Great falls High...it was too loud and hurt, she really hated it! Well yesterday, she said the first time it rang she didn't hear it...."because I was so focused on what i was doing" and then the second time it rang, it was soft, she knew it was the bell, but it didn't hurt or overwhelm her any longer. These may seem like such small things but as i think about it, I am so amazed.....it is so awesome! who would be excited about the woooSHING sound of a toilet? WE ARE, WE ARE!!!
Tuesday, September 13, 2011
~Been a LONG time~~
Afternoon everyone!
my mind is racing and i feel like i have so much I need to share! I need to make it a point to write at least once a week! if not every day, especially since Aubrey is in high school and new things are happening:)
Well lets think here for a moment....We are headed to Belgrade Montana tomorrow too see out audiologist from Denver! I guess she can come here to Montana three times a year without getting her licence here and she has a LOT of Montana kids....thought it made sense to come here at least a twice a year and do mappings!! We are excited! I HATED that drive to Denver!!! So tomorrow we will learn exactly what Aubrey is hearing and how she is hearing it! We have yet to even have one mapping since she was activated, it has only been barley 6 months!
Life has been awesome for Aubrey, she now is a high school student!!! wow, I feel old! But she seems to be so "normal" I watch her and every time i see her doing sports, expressions of silence or even studying....my eyes weld up with tears. She is so AMAZING. So strong, such a go getter! Nothing has slowed that kiddo down. She is involved in high school volleyball....she is actually good too. She wants nothing more then to do more and do better. She wants to learn how to be a score keeper, not exactly sure what the official name is for those people in VBALL....but she wants it:) I sometimes get lost watching the interpret and i drift off to my brain and thinking to myself, wow, she could be the next president, watch out Obama:) Aubrey See's nothing as a challenge....she See's what she wants and dives right in for it! Why am i amazed, well can I be honest? yes, sure I can this is MY BLOG:) Well as a hearing person i was clueless as to what Aubrey was going to turn out to be, I was scared of what kind of limits this was going to put on her....I didn't know and understand deafness, implants, hearing aids. I always caught myself wondering how and if she was going to be able to do certain things. I was scared. I remember the day Aubrey and I had the conversation about babies, she came to me with tears in her eyes, wondering if she would be able to be a mommy~~~now i know nothing is wrong but she cant hear, but i couldn't answer that for her. I didn't know. I remember wondering about sports, how can she play, her ability is there but would they let this "deaf kid" play? I didn't know....I remember wondering HOW ON EARTH can she drive? not that she isn't smart as a whip....but how would she be able to know the fire truck is a block away racing to whiz past her. I said something a few lines up and as i re-read that word "limitations" I can say I am learning that I can be the one to limit her if I am not careful.....I have met a few AMAZING people who are involved with the deaf community elsewhere and I have learned so much in such a short time. Whenever there are questions and ones that i would be scared to say out loud I truly know Davida will give it to me like it is! I have learned that I need that support! I need to explore deaf culture, hard of hearing or not I can understand and it is my job to learn and pass on this gift of acceptance to others along my journey:)
~~The sounds just keep coming for Aubrey...the wind, the waterfalls, the birds chirping (if it is a crow) the jingles of the dogs collar, the obnoxious typing on the computer keyboard:) other people mowing their lawns....the car turns signal...sweeping the floor, whatever that kind of sound makes. OH and when you are in the gym and that crazy scretcky sound the shoes make on the gym floor, that one drives her crazy!!! The part that I really love to hear is Aubrey correct her sister....she is often teling madie that she says something wrong and teaches her the correct way:) that to me is a neat moment!!!
~~So let me end this blog now by saying I am so blessed and I am so proud! I am going to make a better effort at blogging....sharing our life, i know I have learned things from others along this path, and I want to be able to share our experinces in hopes something might strike a cord with someone else!!!
Monday, April 18, 2011
╔══╗
╚╗╔╝☆¸.•°*”˜˜”*•.¸☆★☆¸.•°*”˜♥
╔╝(¯`v´¯)
╚══`.¸.MY FAMILY
Well it has been a while since i have sat down and wrote a entry in our journey, so here I am. I must say that this process is mpt for the weary, nor a quick fix, it is exactly what the title of my blog is...a journey. You must be committed to this process and make sure that everyone is keeping busy and challenging you (Aubrey)keeping everyone on their toes!
I would love any ideas on listening games and things that you have had success with....everything and anything are a great thing to add to our already large list! Please throw out ANY and ALL ideas...I want to make sure that we are keeping her brain busy. I did have to get after her school today as they don't think her auditory training takes priority...they seem to think that she needs to get caught up from the weeks she missed as we were in Denver having surgery for the implant! So that was a challenge, I am honestly surprised at the lack of care and lack of leadership they had taken. so again anyone with ideas please drop me a note...
As to Aubz and her hearing it has been a exciting thing to be apart of..to see her eyes go big thinking something didn't make noise and all of a sudden hearing it for the first time. The other day she texted me saying "do you realize how much noise the broom makes when you sweep" nope, not at all...haha that was just one of those things i tune out! She seems to be a little overwhelmed when there is lots of background noise~~trying to get her brain to process it all
╚╗╔╝☆¸.•°*”˜˜”*•.¸☆★☆¸.•°*”˜♥
╔╝(¯`v´¯)
╚══`.¸.MY FAMILY
Well it has been a while since i have sat down and wrote a entry in our journey, so here I am. I must say that this process is mpt for the weary, nor a quick fix, it is exactly what the title of my blog is...a journey. You must be committed to this process and make sure that everyone is keeping busy and challenging you (Aubrey)keeping everyone on their toes!
I would love any ideas on listening games and things that you have had success with....everything and anything are a great thing to add to our already large list! Please throw out ANY and ALL ideas...I want to make sure that we are keeping her brain busy. I did have to get after her school today as they don't think her auditory training takes priority...they seem to think that she needs to get caught up from the weeks she missed as we were in Denver having surgery for the implant! So that was a challenge, I am honestly surprised at the lack of care and lack of leadership they had taken. so again anyone with ideas please drop me a note...
As to Aubz and her hearing it has been a exciting thing to be apart of..to see her eyes go big thinking something didn't make noise and all of a sudden hearing it for the first time. The other day she texted me saying "do you realize how much noise the broom makes when you sweep" nope, not at all...haha that was just one of those things i tune out! She seems to be a little overwhelmed when there is lots of background noise~~trying to get her brain to process it all
Sunday, March 27, 2011
~~~day 3, really:)
Well today is Sunday afternoon and we are so ready to go home! We miss Madeline and Dad so very much! As much as the Ronald McDonald House is AMAZING and so wonderful, it is NOT home:) These people here are one in a million, everyone has a different story and it is as unique as a zebra print! The one thing that I have really learned is we as people need to show more compassion, we need to reach out more! everyone somewhere is having a bad day...a bad moment... We don't know what is going on in their lives, and who are we to judge. That almost sounds funny~~coming out of my mouth, because I know I have a strong attitude and opinions...But something in the last few weeks has blossomed inside!
~~~~~Before i go on to chat about Aubrey...please send hugs and loves and healing thoughts to DENVER, the Children's hospital, and the families who have such heavy hearts!!~~~~~~
****We went to the Denver Zoo yesterday and truly it was a day that I will never forget! just the excitement in my daughters eyes, sharing such a fun filled day. We also had crazy Moe girl come from Texas her wonderful boyfriend Jason and Mama Moe to share the ZOO experience with! Once I get home to MY computer I will post more pictures, and the few videos we have, so much we share on facebook too, so if any of you are not on my friends list reading this...feel free to ask for a invite:) ANYWAY, we did learn that the birds, which she has so wanted to hear are to high of a pitch so we need to chat about that when we see Jennifer on Monday. The geese were out like crazy and those guys she heard! I think she was ready to kick them:) As we were going from all the exhibits she was just in love with those big animals and amazed at the Bright colors of so many of them. The elephants and monkeys and zebras...OH the apes stole our hearts. As we were walking by the "horse" exhibit, not sure what exactly they were....not a horse not a mule but a ancestor of a horse....they were making their sounds (neigh), Aubrey stopped us because she heard something she wasn't sure what exactly it was. It happened again, I had to quickly pull together my world to think about what was going on and what sounds she could be talking about....as it happened again he turned to see them and that was it....she had never experienced the sounds of a horse! wow, think about that....a simple sound that I have heard a million times....this time was the best of the best! At the end of our day we ended it in the gift shop~~~wow, does Denver have a gift shop, it was two floors. We were on a mission:) A very nice older lady was working there and she immediately came to us and wanted to help us....she says 'now tell me what you need' inside my head I was worried her arms were bigger then my basket!!! So after naming everything we wanted to all the special people back in MONTANA...this woman, says tell me your story, my husband is a doctor. So we shared little pieces of our journey and this woman was now standing in front of me with tears welding in her eyes. She expressed how beautiful Aubrey was and how amazing her voice was....I wanted to take her home with me (she reminded me of the little Sicilian grandma, and she needed to fit in my back pack) Then we talked about her heart surgery and she shared with me that her husband was a cardiologist...OH, this woman was amazing! she was so sweet and so compassionate! So after a huge chunk out of my wallet we were on our way back to the RMH.
******Then she was off again, this time to a LACROSSE game, and that even got a rise out of her, she was excited to hear the buzzer...and she giggled when she had to take off her processor when the woman was screaming at the referees...she was a little angry and very LOUD!!! but it was nice, it was a great experience:)
*****coming home, watching her take off her processor, it was like AHHHH, this is great! Aubz said...that was a great feeling for her. At times just taking it off and being in a quite world:)
~~~~~Before i go on to chat about Aubrey...please send hugs and loves and healing thoughts to DENVER, the Children's hospital, and the families who have such heavy hearts!!~~~~~~
****We went to the Denver Zoo yesterday and truly it was a day that I will never forget! just the excitement in my daughters eyes, sharing such a fun filled day. We also had crazy Moe girl come from Texas her wonderful boyfriend Jason and Mama Moe to share the ZOO experience with! Once I get home to MY computer I will post more pictures, and the few videos we have, so much we share on facebook too, so if any of you are not on my friends list reading this...feel free to ask for a invite:) ANYWAY, we did learn that the birds, which she has so wanted to hear are to high of a pitch so we need to chat about that when we see Jennifer on Monday. The geese were out like crazy and those guys she heard! I think she was ready to kick them:) As we were going from all the exhibits she was just in love with those big animals and amazed at the Bright colors of so many of them. The elephants and monkeys and zebras...OH the apes stole our hearts. As we were walking by the "horse" exhibit, not sure what exactly they were....not a horse not a mule but a ancestor of a horse....they were making their sounds (neigh), Aubrey stopped us because she heard something she wasn't sure what exactly it was. It happened again, I had to quickly pull together my world to think about what was going on and what sounds she could be talking about....as it happened again he turned to see them and that was it....she had never experienced the sounds of a horse! wow, think about that....a simple sound that I have heard a million times....this time was the best of the best! At the end of our day we ended it in the gift shop~~~wow, does Denver have a gift shop, it was two floors. We were on a mission:) A very nice older lady was working there and she immediately came to us and wanted to help us....she says 'now tell me what you need' inside my head I was worried her arms were bigger then my basket!!! So after naming everything we wanted to all the special people back in MONTANA...this woman, says tell me your story, my husband is a doctor. So we shared little pieces of our journey and this woman was now standing in front of me with tears welding in her eyes. She expressed how beautiful Aubrey was and how amazing her voice was....I wanted to take her home with me (she reminded me of the little Sicilian grandma, and she needed to fit in my back pack) Then we talked about her heart surgery and she shared with me that her husband was a cardiologist...OH, this woman was amazing! she was so sweet and so compassionate! So after a huge chunk out of my wallet we were on our way back to the RMH.
******Then she was off again, this time to a LACROSSE game, and that even got a rise out of her, she was excited to hear the buzzer...and she giggled when she had to take off her processor when the woman was screaming at the referees...she was a little angry and very LOUD!!! but it was nice, it was a great experience:)
*****coming home, watching her take off her processor, it was like AHHHH, this is great! Aubz said...that was a great feeling for her. At times just taking it off and being in a quite world:)
Friday, March 25, 2011
Today is day number 1!!!!
Wow, where do I even begin? how can I express what is in my heart? My emotions are a mess, I feel sick, I can't eat~~I just tried to drink a cup of coffee tonight, took two sips and dumped it out! and I am NOT even the one who just had her world change!!!
~~So let me give you our day! after a LONG night, no sleep~~we were like 2 little school girls chatting about cute boys:) we woke up and the minutes seemed to be like weeks...we watched the clock and it wasn't moving!! Life was in a stand still, and again I think, I am not the one who's world is changing...and i was emotionally a MESS. I could see inside Aubz was not letting on her inner freaking out! She was giddy and I could tell she was READY:)
Dionne came to pick us up at the RMH, it was nicer then riding that shuttle...but it felt like again, the last ride of silence for my girl! We got there and there was a awesome~~wonderful couple in the waiting room who long story short adopted a beautiful special needs little boy...and his challenges were nothing compared to ours. Watching that little boy smile and play peek a boo with me what such a amazing feeling. He was so full of life and such a happy little man! He made the time go by much faster!!! Finally our name was called...we walked back and we were in the room, Aubrey" "kit" was on the table ( which i called my special FED undercover case) cause it was very slick! Dionne, our mentor from AB ( even though we choose another brand, she and her family supported us all the way! Dionne has been there from DAY one, back when we were planning surgery~~never left our side!! THANKS DIONNE...you guys are AWESOME!!!
~~So where was i, see my mind is totally in a cloud! OH, so they went to turn her on and she was just going to hear the beeps, and that threw me over the edge...I was in tears already...Dionne was a mess as well, she was reminiscing over her sons activation and their journey~~WOW, such a powerful time~~ So lost myself again...uhm, we called dad and had him on speaker phone...he was in our hearts, but was back in Montana, so we called and had him apart of activation day too!! This appointment took took hours, and at one point I was about ready to pass out, I felt like a sweaty mess...I look over and Aubrey has a HUGE smile on her face! She was sitting up straight and had a grin from ear to ear! The computer was hooked up and we were ready~~Jennifer was awesome she was counting on her fingers so Aubrey could be totally aware of life! The two hours was honestly a blur, i remember her plugging in her IPOD and that I was told was amazing, usually people wait for a few months, because music is a whole different story. It is NOT the same as hearing aids or just her ears! here it had been an hour and she was plugging in her tunes, she picked a familiar song and she HEARD it, the smile on her face was freaking AMAZING, nothing could have been better. Then our voices, Daddy says on speaker phone, I LOVE YOU AUBZ, she turns and says I love you to dad~~the flood of emotions washed over me...she was calm~~cool and very collected> I don't know how she was doing it cause i certainly was not holding back any emotions!
As our appointment ended Jennifer did share with us how amazed she was at the volume she was at with Aubrey's implant, NEVER in all her implants has she ever started a activation this loud! Aubrey is ready to hear! This was AWESOME news. I knew truly that this kid was ready to shine, she was ready to hear she was ready to get on with life...she was born ready! She is going to make this journey distinctly different~~Because of her desire and her passion!!
~~~ some conversation she has heard....
We were sitting in our room at RMH and she was on my bed...and Kay (a fellow RMH friend) was sitting by the window...it was about 6 feet?? Kay was looking out the window (the shuttle was letting someone off) and Kay was letting us know who it was....we were of course being nosey:) and she says "ohh, it's that blonde woman....mind you aubz is sitting on my bed, looking at her IPOD....not looking at all towards the window or Kay's direction and her little head pops up and says....what blonde woman, what blonde woman mom are you guys talking about!!!
~~~ Then tonight at dinner, she was being a typical teen she was down eating first...mind you we are in the second floor kitchen of the Ronald McDonald house, lots of people, lots of noise, lots of talking....commotion everywhere! and she got up walked away from the table...I was now behind her still sitting trying to eat dinner...and she was o, about 8 feet away I say....AUBZ she turns and says what?? I say "just checking, i love you"
wow, a amazing day, i have so much to be thankful for...First and Foremost! a little bird who told me about Denver...We would have never known the AMAZING loving compassionate people...Jennifer our audiologist, Stephanie the support....and Dionne, they wonderful woman have made a MASSIVE impact on our life and made footprints on our hearts forever! Children's hospital, Dr. Yoon who did a AMAZING job, such a TINY scar...which to a girl is so important, she barley had to take off much hair. This process is exactly how i want it...Yes, bumps and hiccups are to be expected~~Our friends and family back home in Montana...Seattle..Massachuttes...I feel so honored! Thank you for being with us....all the texts and emails and calls...my friends helped me get through this time without having Frank right here with me!
My mind is still in a cloud, but we will add the video of activation as soon as we figure it out....or once we get home and at my computer...and this blog will not stop, it is a beginning to Aubrey's life....HAPPY BIRTHDAY TO AUBZ. A special side note, today is a day of tears and heartache for a best friend of mine...her daughter, Destiny passed away 9 years ago today...I cannot say i understand your heart, but today will be two special girls day always and forever from today on....I LOVE YOU JESS
~~So let me give you our day! after a LONG night, no sleep~~we were like 2 little school girls chatting about cute boys:) we woke up and the minutes seemed to be like weeks...we watched the clock and it wasn't moving!! Life was in a stand still, and again I think, I am not the one who's world is changing...and i was emotionally a MESS. I could see inside Aubz was not letting on her inner freaking out! She was giddy and I could tell she was READY:)
Dionne came to pick us up at the RMH, it was nicer then riding that shuttle...but it felt like again, the last ride of silence for my girl! We got there and there was a awesome~~wonderful couple in the waiting room who long story short adopted a beautiful special needs little boy...and his challenges were nothing compared to ours. Watching that little boy smile and play peek a boo with me what such a amazing feeling. He was so full of life and such a happy little man! He made the time go by much faster!!! Finally our name was called...we walked back and we were in the room, Aubrey" "kit" was on the table ( which i called my special FED undercover case) cause it was very slick! Dionne, our mentor from AB ( even though we choose another brand, she and her family supported us all the way! Dionne has been there from DAY one, back when we were planning surgery~~never left our side!! THANKS DIONNE...you guys are AWESOME!!!
~~So where was i, see my mind is totally in a cloud! OH, so they went to turn her on and she was just going to hear the beeps, and that threw me over the edge...I was in tears already...Dionne was a mess as well, she was reminiscing over her sons activation and their journey~~WOW, such a powerful time~~ So lost myself again...uhm, we called dad and had him on speaker phone...he was in our hearts, but was back in Montana, so we called and had him apart of activation day too!! This appointment took took hours, and at one point I was about ready to pass out, I felt like a sweaty mess...I look over and Aubrey has a HUGE smile on her face! She was sitting up straight and had a grin from ear to ear! The computer was hooked up and we were ready~~Jennifer was awesome she was counting on her fingers so Aubrey could be totally aware of life! The two hours was honestly a blur, i remember her plugging in her IPOD and that I was told was amazing, usually people wait for a few months, because music is a whole different story. It is NOT the same as hearing aids or just her ears! here it had been an hour and she was plugging in her tunes, she picked a familiar song and she HEARD it, the smile on her face was freaking AMAZING, nothing could have been better. Then our voices, Daddy says on speaker phone, I LOVE YOU AUBZ, she turns and says I love you to dad~~the flood of emotions washed over me...she was calm~~cool and very collected> I don't know how she was doing it cause i certainly was not holding back any emotions!
As our appointment ended Jennifer did share with us how amazed she was at the volume she was at with Aubrey's implant, NEVER in all her implants has she ever started a activation this loud! Aubrey is ready to hear! This was AWESOME news. I knew truly that this kid was ready to shine, she was ready to hear she was ready to get on with life...she was born ready! She is going to make this journey distinctly different~~Because of her desire and her passion!!
~~~ some conversation she has heard....
We were sitting in our room at RMH and she was on my bed...and Kay (a fellow RMH friend) was sitting by the window...it was about 6 feet?? Kay was looking out the window (the shuttle was letting someone off) and Kay was letting us know who it was....we were of course being nosey:) and she says "ohh, it's that blonde woman....mind you aubz is sitting on my bed, looking at her IPOD....not looking at all towards the window or Kay's direction and her little head pops up and says....what blonde woman, what blonde woman mom are you guys talking about!!!
~~~ Then tonight at dinner, she was being a typical teen she was down eating first...mind you we are in the second floor kitchen of the Ronald McDonald house, lots of people, lots of noise, lots of talking....commotion everywhere! and she got up walked away from the table...I was now behind her still sitting trying to eat dinner...and she was o, about 8 feet away I say....AUBZ she turns and says what?? I say "just checking, i love you"
wow, a amazing day, i have so much to be thankful for...First and Foremost! a little bird who told me about Denver...We would have never known the AMAZING loving compassionate people...Jennifer our audiologist, Stephanie the support....and Dionne, they wonderful woman have made a MASSIVE impact on our life and made footprints on our hearts forever! Children's hospital, Dr. Yoon who did a AMAZING job, such a TINY scar...which to a girl is so important, she barley had to take off much hair. This process is exactly how i want it...Yes, bumps and hiccups are to be expected~~Our friends and family back home in Montana...Seattle..Massachuttes...I feel so honored! Thank you for being with us....all the texts and emails and calls...my friends helped me get through this time without having Frank right here with me!
My mind is still in a cloud, but we will add the video of activation as soon as we figure it out....or once we get home and at my computer...and this blog will not stop, it is a beginning to Aubrey's life....HAPPY BIRTHDAY TO AUBZ. A special side note, today is a day of tears and heartache for a best friend of mine...her daughter, Destiny passed away 9 years ago today...I cannot say i understand your heart, but today will be two special girls day always and forever from today on....I LOVE YOU JESS
Wednesday, March 23, 2011
feeling like a ASS
~~Tonight I am just going to talk to myself on this blog~~
As i usually do anyway? i use this more as a journal then a giving information, but I guess I share with you my soul..my aches and pains as a person and a mother!
The video phone has been down since we got here to Denver..I am feeling like NO ONE uses it, or they have experienced the same issues we have and just have let it go. Well you know me, I am not quite nor am I about to let this go. So after many phone calls, meetings and rants and raves~~It is now working! I got sincere apologies and they all had said thank you for bringing this to our attention. They even went as far as setting up sessions and training for ALL the staff on the VP and MARTII (the hospitals computer interpreter. They admitted to letting Aubrey down! which I am glad they are doing training, like I have always said if my tears and heartache help another person, prevent another or family from some of the same heartaches....then it is ALL worth it!
~~So tonight I hurt, my heart hurts so bad! After 1- days the VP is up and working, well Aubrey only has certain times she can call her friends back in Montana. The kids are at school and have activities after school...then another friend never answers her VP or tango or cell phone! She was crushed. She said to me tonight such a strong statement.... "mom, it's crap! you and everyone else can talk on the phone whenever you want, nothing stops you, I cant!" as tears rolled down her cheeks..I was so torn, she was so right! Do we as mom's dad's Friends, sisters...aunts and uncles~~professionals and neighbors we NEED to open our eyes and our hearts~~
~~So coming back to the Ronald McDonald House I could tell she was upset, I wasn't exactly sure what it was but knowing my daughter it was something! big. I came in and read her blog and ughhh my heart fell! I cant make up for it, I cant go back and do it differently~~~But what I can do is make sure the next time....I do it totally different. I need to ALWAYS realize of who is around me~~
As i usually do anyway? i use this more as a journal then a giving information, but I guess I share with you my soul..my aches and pains as a person and a mother!
The video phone has been down since we got here to Denver..I am feeling like NO ONE uses it, or they have experienced the same issues we have and just have let it go. Well you know me, I am not quite nor am I about to let this go. So after many phone calls, meetings and rants and raves~~It is now working! I got sincere apologies and they all had said thank you for bringing this to our attention. They even went as far as setting up sessions and training for ALL the staff on the VP and MARTII (the hospitals computer interpreter. They admitted to letting Aubrey down! which I am glad they are doing training, like I have always said if my tears and heartache help another person, prevent another or family from some of the same heartaches....then it is ALL worth it!
~~So tonight I hurt, my heart hurts so bad! After 1- days the VP is up and working, well Aubrey only has certain times she can call her friends back in Montana. The kids are at school and have activities after school...then another friend never answers her VP or tango or cell phone! She was crushed. She said to me tonight such a strong statement.... "mom, it's crap! you and everyone else can talk on the phone whenever you want, nothing stops you, I cant!" as tears rolled down her cheeks..I was so torn, she was so right! Do we as mom's dad's Friends, sisters...aunts and uncles~~professionals and neighbors we NEED to open our eyes and our hearts~~
~~So coming back to the Ronald McDonald House I could tell she was upset, I wasn't exactly sure what it was but knowing my daughter it was something! big. I came in and read her blog and ughhh my heart fell! I cant make up for it, I cant go back and do it differently~~~But what I can do is make sure the next time....I do it totally different. I need to ALWAYS realize of who is around me~~
Tuesday, March 22, 2011
counting down the days....
~~Good Morning...
I haven't done a very good job of posting here,not my intention at all! I seem to put everything on facebook:) anyhow Denver is beautiful today. The sun is shinning and the sky is blue. Talked to Frank today and he said that it was 25 degrees and snowing~~ugh I am liking this almost summer like weather here!
Well I must say that surgery is NOT at all as bad as I was thinking it was going to be. Aubrey has taken this challenge head on~~she hasn't taken a pain pill in 3 days. yesterday she was doing cartwheels and three days after surgery she was doing yoga!!! the kid is amazing!
I will say she has had a hard time with the nausea and dizziness, but NOT like others~~some have to literally hold the walls to walk anywhere! As of yesterday I would safe it is safe to assume that the worst is over. We saw the surgeon and she said everything is healing beautifully~~There was a concern at one point, I had actually taken her back to the ER. She was slurring her words and really dizzy and having a hard time keeping anything down. They said that she was really dehydrated, so we got some fluids in her! ~~~A SIDE NOTE~~~ I was SO not happy with Children's hosptial emergency department, and they have heard about it. I went straight to the TOP man in charge! I asked for a interpetor when we got in, the doctor says "well you can sign cant you" well, that is not the point I say, I am not going to sign, tonight I want to be her mother so you will need to get a interpetor. They brought in Martii (the hosptial's computer interpetor on wheels. NO ONE had a clue how to run it! My blood was boiling at this point. How do I teach my daughter how to have a voice if this hospital is not willing to support her way of communication. NOT ACCEPTABLE. The doctor asked me wuestions, I am not the patient, I am not the one who is sick...come on now, am i over reacting? NO! NOT AT ALL. Everyone needs to be aware, you may not have to care...thats my job, but you need to have compassion twords others, not be a ignorant ASS. The other issue, since I am on a role now....the hospital's VP (video phone) is not working, nor has it been working since we got here. Most people did NOT even know they had one. NO one had a clue how to fix it! as of today, I think we are working on it, I had talked to the director of public relations and let him know it was NOT acceptable, I could understand if they needed to call at IT guy, or needed some time to call the right people. NOT a week and a half!!!!! that has me very upset! Her dad and sister are not here in Denver, and they need to be apart of this journey too~~~
So where was I?? I went off on a important tangent! (the spell check is not working either on this computer so bear with me:) Friday is activation...we are so excited! Aubrey said to me last night, "mom, I am excited to hear your voice again" ugh that sent me in some tears. I agree! I am so proud of Aubrey and the way she has taken this challange head on! she is a true insperation!!!! ohh, needless to say, The one thing Aubz has missed "hearing" is animals...the birds chirping the dogs barking...well Saturday we are foing to the Denver ZOO!!!! talk anout AMAZING!!!!
I haven't done a very good job of posting here,not my intention at all! I seem to put everything on facebook:) anyhow Denver is beautiful today. The sun is shinning and the sky is blue. Talked to Frank today and he said that it was 25 degrees and snowing~~ugh I am liking this almost summer like weather here!
Well I must say that surgery is NOT at all as bad as I was thinking it was going to be. Aubrey has taken this challenge head on~~she hasn't taken a pain pill in 3 days. yesterday she was doing cartwheels and three days after surgery she was doing yoga!!! the kid is amazing!
I will say she has had a hard time with the nausea and dizziness, but NOT like others~~some have to literally hold the walls to walk anywhere! As of yesterday I would safe it is safe to assume that the worst is over. We saw the surgeon and she said everything is healing beautifully~~There was a concern at one point, I had actually taken her back to the ER. She was slurring her words and really dizzy and having a hard time keeping anything down. They said that she was really dehydrated, so we got some fluids in her! ~~~A SIDE NOTE~~~ I was SO not happy with Children's hosptial emergency department, and they have heard about it. I went straight to the TOP man in charge! I asked for a interpetor when we got in, the doctor says "well you can sign cant you" well, that is not the point I say, I am not going to sign, tonight I want to be her mother so you will need to get a interpetor. They brought in Martii (the hosptial's computer interpetor on wheels. NO ONE had a clue how to run it! My blood was boiling at this point. How do I teach my daughter how to have a voice if this hospital is not willing to support her way of communication. NOT ACCEPTABLE. The doctor asked me wuestions, I am not the patient, I am not the one who is sick...come on now, am i over reacting? NO! NOT AT ALL. Everyone needs to be aware, you may not have to care...thats my job, but you need to have compassion twords others, not be a ignorant ASS. The other issue, since I am on a role now....the hospital's VP (video phone) is not working, nor has it been working since we got here. Most people did NOT even know they had one. NO one had a clue how to fix it! as of today, I think we are working on it, I had talked to the director of public relations and let him know it was NOT acceptable, I could understand if they needed to call at IT guy, or needed some time to call the right people. NOT a week and a half!!!!! that has me very upset! Her dad and sister are not here in Denver, and they need to be apart of this journey too~~~
So where was I?? I went off on a important tangent! (the spell check is not working either on this computer so bear with me:) Friday is activation...we are so excited! Aubrey said to me last night, "mom, I am excited to hear your voice again" ugh that sent me in some tears. I agree! I am so proud of Aubrey and the way she has taken this challange head on! she is a true insperation!!!! ohh, needless to say, The one thing Aubz has missed "hearing" is animals...the birds chirping the dogs barking...well Saturday we are foing to the Denver ZOO!!!! talk anout AMAZING!!!!
Monday, March 14, 2011
post surgery
I am going to start this blog saying Aubrey is my inspiration, she is such a testimony. I have been truly amazed at her strength and termination! She has defeated and tackled this surgery hands down.
Surgery was LONG, so long. My arms ached to hold my daughter. I wanted to brush her hair away from her face and kiss her cheek so bad! I watched the clock..read magazines, used the restroom, texted, facebooked and went to the cafeteria...all that in the first hour! Children's really handles everything so well. Every hour the lead nurse would call me and let me know what part of the surgery they were at. Her vitals were always great~but wow, the minutes felt like years! I was told our surgeon was very meticulous, she was a perfectionist, which honestly made me feel great! The one thing that Dr Yoon had shared with me ahead of time was Aubrey's Cochlea (I didn't get a A in spelling) was not formed all the way~that was the part that would take time, placing the electrodes right in the RIGHT spot. A side note here, NEVER had we been told this...wow, 13 years countless ct's and NO ONE has discovered this? Anyhow, after surgery she came to tell me she got it ~everything was perfect. They had tested the implant and it worked beautifully. 6 long hours, and to hear this I was elated!
Post op was rough, she was a barfy kiddo. Pain wasn't a issue~but queasiness was HORRIBLE! I had a hard time, she really did not want anything to do with me. She was irritated with my signing, if I did something wrong she sure let me know. At one point I had to walk away and fall apart! She NEVER has pushed me away. Always wanted my arms and comforts. I felt helpless, I was so offended, so sad and torn. While I was outside crying I gave myself a reality check. It was NOT me, she just had a pretty big surgery and lots of anesthesia. So that night in the hospital she did well, still fought queasiness, but her highest level of pain was a 4! Yes amazing:) in the morning she still had yet to drink really much, so the doctors told her she was not going to be able to go~~she then decided she had enough and ate a omelet and held it down! Minute by minute she was doing better....By noon nothing had come back up and she was ready to go home...well not really but the Ronald McDonald house!
Today has been a low key day! She didn't have much of a appetite for dinner, but honestly gave it great effort! After her pain meds and night meds she started with the snacks:) and might I add the giggly medicated Aubrey came out! To be honest with you I enjoyed giggling and laughing WITH her! As I look over to her bed now, she has given up and is resting comfortably!
Yes, I will say I was so nervous. No one wants to see their child hurt, or go through surgery! But she has taught me so much with this OnE, I am truly honored to be her mom!!!
Surgery was LONG, so long. My arms ached to hold my daughter. I wanted to brush her hair away from her face and kiss her cheek so bad! I watched the clock..read magazines, used the restroom, texted, facebooked and went to the cafeteria...all that in the first hour! Children's really handles everything so well. Every hour the lead nurse would call me and let me know what part of the surgery they were at. Her vitals were always great~but wow, the minutes felt like years! I was told our surgeon was very meticulous, she was a perfectionist, which honestly made me feel great! The one thing that Dr Yoon had shared with me ahead of time was Aubrey's Cochlea (I didn't get a A in spelling) was not formed all the way~that was the part that would take time, placing the electrodes right in the RIGHT spot. A side note here, NEVER had we been told this...wow, 13 years countless ct's and NO ONE has discovered this? Anyhow, after surgery she came to tell me she got it ~everything was perfect. They had tested the implant and it worked beautifully. 6 long hours, and to hear this I was elated!
Post op was rough, she was a barfy kiddo. Pain wasn't a issue~but queasiness was HORRIBLE! I had a hard time, she really did not want anything to do with me. She was irritated with my signing, if I did something wrong she sure let me know. At one point I had to walk away and fall apart! She NEVER has pushed me away. Always wanted my arms and comforts. I felt helpless, I was so offended, so sad and torn. While I was outside crying I gave myself a reality check. It was NOT me, she just had a pretty big surgery and lots of anesthesia. So that night in the hospital she did well, still fought queasiness, but her highest level of pain was a 4! Yes amazing:) in the morning she still had yet to drink really much, so the doctors told her she was not going to be able to go~~she then decided she had enough and ate a omelet and held it down! Minute by minute she was doing better....By noon nothing had come back up and she was ready to go home...well not really but the Ronald McDonald house!
Today has been a low key day! She didn't have much of a appetite for dinner, but honestly gave it great effort! After her pain meds and night meds she started with the snacks:) and might I add the giggly medicated Aubrey came out! To be honest with you I enjoyed giggling and laughing WITH her! As I look over to her bed now, she has given up and is resting comfortably!
Yes, I will say I was so nervous. No one wants to see their child hurt, or go through surgery! But she has taught me so much with this OnE, I am truly honored to be her mom!!!
post surgery
I am going to start this blog saying Aubrey is my inspiration, she is such a testimony. I have been truly amazed at her strength and termination! She has defeated and tackled this surgery hands down.
Surgery was LONG, so long. My arms ached to hold my daughter. I wanted to brush her hair away from her face and kiss her cheek so bad! I watched the clock..read magazines, used the restroom, texted, facebooked and went to the cafeteria...all that in the first hour! Children's really handles everything so well. Every hour the lead nurse would call me and let me know what part of the surgery they were at. Her vitals were always great~but wow, the minutes felt like years! I was told our surgeon was very meticulous, she was a perfectionist, which honestly made me feel great! The one thing that Dr Yoon had shared with me ahead of time was Aubrey's Cochlea (I didn't get a A in spelling) was not formed all the way~that was the part that would take time, placing the electrodes right in the RIGHT spot. A side note here, NEVER had we been told this...wow, 13 years countless ct's and NO ONE has discovered this? Anyhow, after surgery she came to tell me she got it ~everything was perfect. They had tested the implant and it worked beautifully. 6 long hours, and to hear this I was elated!
Post op was rough, she was a barfy kiddo. Pain wasn't a issue~but queasiness was HORRIBLE! I had a hard time, she really did not want anything to do with me. She was irritated with my signing, if I did something wrong she sure let me know. At one point I had to walk away and fall apart! She NEVER has pushed me away. Always wanted my arms and comforts. I felt helpless, I was so offended, so sad and torn. While I was outside crying I gave myself a reality check. It was NOT me, she just had a pretty big surgery and lots of anesthesia. So that night in the hospital she did well, still fought queasiness, but her highest level of pain was a 4! Yes amazing:) in the morning she still had yet to drink really much, so the doctors told her she was not going to be able to go~~she then decided she had enough and ate a omelet and held it down! Minute by minute she was doing better....By noon nothing had come back up and she was ready to go home...well not really but the Ronald McDonald house!
Today has been a low key day! She didn't have much of a appetite for dinner, but honestly gave it great effort! After her pain meds and night meds she started with the snacks:) and might I add the giggly medicated Aubrey came out! To be honest with you I enjoyed giggling and laughing WITH her! As I look over to her bed now, she has given up and is resting comfortably!
Yes, I will say I was so nervous. No one wants to see their child hurt, or go through surgery! But she has taught me so much with this OnE, I am truly honored to be her mom!!!
Surgery was LONG, so long. My arms ached to hold my daughter. I wanted to brush her hair away from her face and kiss her cheek so bad! I watched the clock..read magazines, used the restroom, texted, facebooked and went to the cafeteria...all that in the first hour! Children's really handles everything so well. Every hour the lead nurse would call me and let me know what part of the surgery they were at. Her vitals were always great~but wow, the minutes felt like years! I was told our surgeon was very meticulous, she was a perfectionist, which honestly made me feel great! The one thing that Dr Yoon had shared with me ahead of time was Aubrey's Cochlea (I didn't get a A in spelling) was not formed all the way~that was the part that would take time, placing the electrodes right in the RIGHT spot. A side note here, NEVER had we been told this...wow, 13 years countless ct's and NO ONE has discovered this? Anyhow, after surgery she came to tell me she got it ~everything was perfect. They had tested the implant and it worked beautifully. 6 long hours, and to hear this I was elated!
Post op was rough, she was a barfy kiddo. Pain wasn't a issue~but queasiness was HORRIBLE! I had a hard time, she really did not want anything to do with me. She was irritated with my signing, if I did something wrong she sure let me know. At one point I had to walk away and fall apart! She NEVER has pushed me away. Always wanted my arms and comforts. I felt helpless, I was so offended, so sad and torn. While I was outside crying I gave myself a reality check. It was NOT me, she just had a pretty big surgery and lots of anesthesia. So that night in the hospital she did well, still fought queasiness, but her highest level of pain was a 4! Yes amazing:) in the morning she still had yet to drink really much, so the doctors told her she was not going to be able to go~~she then decided she had enough and ate a omelet and held it down! Minute by minute she was doing better....By noon nothing had come back up and she was ready to go home...well not really but the Ronald McDonald house!
Today has been a low key day! She didn't have much of a appetite for dinner, but honestly gave it great effort! After her pain meds and night meds she started with the snacks:) and might I add the giggly medicated Aubrey came out! To be honest with you I enjoyed giggling and laughing WITH her! As I look over to her bed now, she has given up and is resting comfortably!
Yes, I will say I was so nervous. No one wants to see their child hurt, or go through surgery! But she has taught me so much with this OnE, I am truly honored to be her mom!!!
Sunday, March 13, 2011
Night before surgery
Well here we are! Wow, what a crazy day~we got to the airport early, like u are suppose to~then we were told our plane was 2 hours late, goodness! We were ready to go, I wanted to get this journey going!! So we read, Aubz worked on her homework...we played on our phones....then that announcement came, it was time to board! Yahoo, we were a few steps closer! I must admit, while trying to stay cool, I was a mixture of a mess inside~flying to me is scary. Following directions is about impossible..I was missing the lead of my Frank!
We board the plane, mind you this is all new to Aubrey, she hasn't been on a airplane since her open heart surgery 13 and a half years ago!!! Experiencing this with her was only beginning. Looking out the windows, seeing the world below us, the blankets of snow that went on and on and on! Going threw the clouds, coming out the other side to a blanket of blue sky. As we took of I felt a ball of emotion..I felt that lump in my throat, then the tears just took over! The last 13 years played in my mind. Remembering the day we brought her home, so excited, our baby we tried so hard to have was home with us..her first steps, watching her grow~this moment is Massive to us, this moment in our life is almost indescribable~~
The Denver airport is NOTHING like my Montana airport, I was overwhelmed getting off. The amount of people, signs..food places,stairs,elevators and a TRAM. We rode that for a while, got off and then walked forever...wow, I was panicking inside..looking for Momma Moe...but then I started stressing again, would she recognize me? Oh my mind was spinning. Aubrey was lost too...trying to read me, and figure out where to go! All in all we found mamma Moe! We came to the RMH, ate dinner then off to target to get the goods! I knew I needed pillows~i remembered from last time they were not what I was used to! And Aubz needed her body pillow! Got back here and we got all the goods put away...came to crash and watch some TV, well that was a FLOP and it is going to be a LONG three weeks so - hope a answer can be found! The TV, we can't get the captions on...some guy came and tried and tried but failed. So that was some tense moments! There has to be a way to get it figured out, I will talk with the hospital tomorrow...maybe they can help!
Well early to rise, the shuttle is picking us up at 615. Check in at 630 surgery at 830! I will keep everyone posted ..I am shouting out to Mamma Moe, she made a awesome goodie basket for Aubz, it was more then perfect! What a great welcome to Denver:)Night everyone
We board the plane, mind you this is all new to Aubrey, she hasn't been on a airplane since her open heart surgery 13 and a half years ago!!! Experiencing this with her was only beginning. Looking out the windows, seeing the world below us, the blankets of snow that went on and on and on! Going threw the clouds, coming out the other side to a blanket of blue sky. As we took of I felt a ball of emotion..I felt that lump in my throat, then the tears just took over! The last 13 years played in my mind. Remembering the day we brought her home, so excited, our baby we tried so hard to have was home with us..her first steps, watching her grow~this moment is Massive to us, this moment in our life is almost indescribable~~
The Denver airport is NOTHING like my Montana airport, I was overwhelmed getting off. The amount of people, signs..food places,stairs,elevators and a TRAM. We rode that for a while, got off and then walked forever...wow, I was panicking inside..looking for Momma Moe...but then I started stressing again, would she recognize me? Oh my mind was spinning. Aubrey was lost too...trying to read me, and figure out where to go! All in all we found mamma Moe! We came to the RMH, ate dinner then off to target to get the goods! I knew I needed pillows~i remembered from last time they were not what I was used to! And Aubz needed her body pillow! Got back here and we got all the goods put away...came to crash and watch some TV, well that was a FLOP and it is going to be a LONG three weeks so - hope a answer can be found! The TV, we can't get the captions on...some guy came and tried and tried but failed. So that was some tense moments! There has to be a way to get it figured out, I will talk with the hospital tomorrow...maybe they can help!
Well early to rise, the shuttle is picking us up at 615. Check in at 630 surgery at 830! I will keep everyone posted ..I am shouting out to Mamma Moe, she made a awesome goodie basket for Aubz, it was more then perfect! What a great welcome to Denver:)Night everyone
Friday, March 11, 2011
Good Morning...
Last night, Aubrey and I had the chance to just lay on her bed and chat, it was so awesome to just enjoy some moments before life gets crazy! A friend of hers ~~ Who is 18 just got her implant activated and has so great about sharing with Aubrey her experience and what to expect what bothers her...and how it changed her life. Aubrey said that hearing T's experience has made it much more real for her, she is even more excised about this process. She was telling me about the toilet never will be the same...When T goes to the bathroom the sound of the toilet flushing is still overwhelming to her and she takes her implant off~~~Think about that, really how awesome! Then we spent time chatting about the animals...Aubrey wonders if she will hear the cat purr? the ducks and birds. She was excited about starting my car in the mornings:) you see that has always been something she enjoys to do...but in recent years I have had to stop her, when i use my ears and hear the grinding of the engine...gave me a little worry about my car! Aurbey isn't able to know when the car has started. Especially since so many of today's cars are so quite~~heck even for me it can be a challenge. But she hated not being able to run out and start daddy's car for him on chilly mornings:)
My girls are amazing...I am so anxious for life to begin on a different note for Aubrey:) stay tuned I will be posting as we are in Denver. Surgery is Monday and activation is the 25Th....
Last night, Aubrey and I had the chance to just lay on her bed and chat, it was so awesome to just enjoy some moments before life gets crazy! A friend of hers ~~ Who is 18 just got her implant activated and has so great about sharing with Aubrey her experience and what to expect what bothers her...and how it changed her life. Aubrey said that hearing T's experience has made it much more real for her, she is even more excised about this process. She was telling me about the toilet never will be the same...When T goes to the bathroom the sound of the toilet flushing is still overwhelming to her and she takes her implant off~~~Think about that, really how awesome! Then we spent time chatting about the animals...Aubrey wonders if she will hear the cat purr? the ducks and birds. She was excited about starting my car in the mornings:) you see that has always been something she enjoys to do...but in recent years I have had to stop her, when i use my ears and hear the grinding of the engine...gave me a little worry about my car! Aurbey isn't able to know when the car has started. Especially since so many of today's cars are so quite~~heck even for me it can be a challenge. But she hated not being able to run out and start daddy's car for him on chilly mornings:)
My girls are amazing...I am so anxious for life to begin on a different note for Aubrey:) stay tuned I will be posting as we are in Denver. Surgery is Monday and activation is the 25Th....
Sunday, March 6, 2011
one week and counting....
Goodness gracious....we are ONE week away from surgery! Our families life is about to change! Most of all my girl~~her life is about to become everything and more!
This morning i woke up to my nerves, I am so nervous and anxious...I hope it will be what I think..I only pray for amazing things, but i also have those mother worries! What about her headaches, what if nothing changes, what if she has complications....but all in all I truly understand that those feelings are normal...my daughter is having surgery!
These headaches are crazy, I hate hate hate seeing Aubrey struggle so much. We have seen the neurologist and we are increasing her medications, and have a standing order for Toradol in her file....but in all reality, we have yet to find something that is helping. One thing that Frank and I noticed is her pupils get huge when she is having a headaches, and that is the "cue" for the school nurse, she See's Aubrey's headache....well we found out that is how her body reacts to the pain! wow, guess you cant lie about a headache! SO, I spoke with our audiologist, explained to her my fears...Dr. Yoon will be calling me this week...but she said it is not predictable, just because you get a implant doesn't mean you are going to suffer from headaches for the rest of your life. But on the flip side to that so many of the posts i see are talking about the pain of the headache and how horrible it is!
On a different note....My Madeline is having a hard time with mommy leaving for so long! she wrote me a letter and told me i cant read it until i am on the airplane:) so sweet, she got that idea from me. This morning I was going crazy, making lists and writing notes! I cant imagine three weeks away from the family...its honestly not even three weeks, it is 17 days...ohh man!
~~In the mist of all of this...insurance has been cleared BUT, they are not impressed with me...they don't understand why Dr. Vondorsten, who is in Missoula which is 3 hours away from us...why he will not preform this CI. Geesh I have not a clue! and after he called me and told me how horrible i was as a parent, he can jump off a bridge. His opinions do NOT matter to me! I think it is crazy I am the one being questioned about it! I finally asked for the board of medicals staff and I will be writing them a letter...I have enough on my plate to deal with...
This morning i woke up to my nerves, I am so nervous and anxious...I hope it will be what I think..I only pray for amazing things, but i also have those mother worries! What about her headaches, what if nothing changes, what if she has complications....but all in all I truly understand that those feelings are normal...my daughter is having surgery!
These headaches are crazy, I hate hate hate seeing Aubrey struggle so much. We have seen the neurologist and we are increasing her medications, and have a standing order for Toradol in her file....but in all reality, we have yet to find something that is helping. One thing that Frank and I noticed is her pupils get huge when she is having a headaches, and that is the "cue" for the school nurse, she See's Aubrey's headache....well we found out that is how her body reacts to the pain! wow, guess you cant lie about a headache! SO, I spoke with our audiologist, explained to her my fears...Dr. Yoon will be calling me this week...but she said it is not predictable, just because you get a implant doesn't mean you are going to suffer from headaches for the rest of your life. But on the flip side to that so many of the posts i see are talking about the pain of the headache and how horrible it is!
On a different note....My Madeline is having a hard time with mommy leaving for so long! she wrote me a letter and told me i cant read it until i am on the airplane:) so sweet, she got that idea from me. This morning I was going crazy, making lists and writing notes! I cant imagine three weeks away from the family...its honestly not even three weeks, it is 17 days...ohh man!
~~In the mist of all of this...insurance has been cleared BUT, they are not impressed with me...they don't understand why Dr. Vondorsten, who is in Missoula which is 3 hours away from us...why he will not preform this CI. Geesh I have not a clue! and after he called me and told me how horrible i was as a parent, he can jump off a bridge. His opinions do NOT matter to me! I think it is crazy I am the one being questioned about it! I finally asked for the board of medicals staff and I will be writing them a letter...I have enough on my plate to deal with...
Thursday, March 3, 2011
~~Happy Thursday Morning~~
It feels like it has been a crazy few weeks, and now I am starting to get us ready to go to Denver for surgery! wow, this time has come faster then I thought! Packing is getting my anxiety going...thinking how am i going to pack three weeks of stuff in little bags, or without going broke! but alas, I can do it!
Well, last week Miss Madeline LOST her hearing aid...again! its only like the 800th time! That kiddo, just is NOT getting it. espeically since we know it helps her so much! keeping track of it is more then difficult for her. I came home yesterday to start some laundry and shorting clothes....out of the corner of my eye i saw the aid fly through the air! Long story short the dog got it and now it is totally destroyed!
~~On the other hand~~
10 days till Denver...wow time is creeping up!! 11 days till surgery...WOW. so excited!! I dont think Aubrey has a nervous bone in her body...she is SO excited! That does make it easier for me:) GO AUBZ
Saturday, February 26, 2011
Thursday, February 17, 2011
~~My family is SO not perfect, BUT, I am SO in love with them~~
The tickets were bought(thanks Erick) everything is coming together for DENVER. It would be better if the Ronald McDonald house took reservations, but hey....FAITH, right? So I do ask everyone reading this....please think about the 13th or March, send GOOD WARM vibes to the RONALD MAC house that it will be EMPTY!
Its crazy to think this day is almost here. It cant come fast enough...well, maybe it can...becuase packing for three weeks and on a budget...uhm, yeah. My thoughts are to send a box either to the hospital or the RMH...with some comforting things. Aubrey has already told me that she needs to take her blanket...yeah queen size pink fuz...but I guess if it is something that brings comfort to her...then she will need it! Thank goodness for my blackberry, I will be living on it I am sure!
~~The sun is shining today....so pretty:) although I must admit, I am so tired of this white stuff they call snow. I am not sure I want to say that too loud...being as I live in MONTANA. It is fun to watch the kids get excited about sledding and snow ball fights, but I am excited for summer!
Madie has been so sick> I want to say today is day number 12. Her strep throat, influenza, croup and RSV tests all came back positive. Yep, the girl has been nailed by the sick bugs....today we just added a second antibiotics, the big guns are out:) lets get better. My nights and days are all running together. I am tired and afraid a little cranky.
So again, March 14Th is surgery. We are to be at the hospital at 630, surgery is at 830... here is where I will keep track of EVERYTHING. Pictures and videos:)
Tuesday, February 15, 2011
Good Morning blog readers!
Well I sit here this morning taking a few to take into my head and heart some feelings....WOW, not long and we will be in DENVER!
There is a girl on face book who I recently have become friends with...She is a 35 year old adult....beautiful adult. Of course I looked at all her wedding pictures...go straight to her ear to see if her aids were noticeable...isn't that was we all do? ha ha, well this mother has those things on her mind, I guess it seems normal to me. Anyway, her implant was turned on the 24Th of January. She shares a video of activation day...WOW, I have watched it 7 times, and I cry harder each time! I hear her voice, which seems to be great...then I think of Aubrey...will she have this reaction? will it be this moving for her?
I must be honest and also share that i think back to ALL the audiologists we have had....I want to tell them all and i mean ALL how and where we are today is NOT because of ANYTHING they have done. I think back to ALL and I mean all...Audie's and speech therapists and I think....why? I think...in your face! I think...wow, I feel so sorry for those who are still in with them. Especially our first Audiologist. I wasted 10 years with that woman, she did nothing but make me feel like a bad parent. Like I was wrong for going to family learning weekends with Aubrey in Greatfalls at the school for the deaf and blind. I never had a true understanding of Aubrey's hearing loss...I had to beg for information...I was at this woman's mercy for all the wrong reasons. Skip a few...move on to the last audiologist we had in Missoula. I thought he was amazing. He had hard of hearing daughter, i thought...OKAY this man understands and truly knows this road. Well for about a year he was great! Then when i got more "in your face"...her hearing was changing almost weekly, his attitude changed. I personally wonder how much it has to do with him working THE doctor in the state of Montana who does cochlear implant surgeries. This doctor mind you REFUSED to implant Aubrey. He actually called me the night before we left for Denver and let me know how he felt! yeah...like I cared, He had made it sound as if he had been apart of our "team" for years...when in fact i had only seen him 3 times in Aubrey's 13 years of life!
~Sorry, getting wrapped up in my thoughts.....what is the most important thing here? that is I can honestly say, looking back, we have done nothing but advocate for our kids, and I will never apologize for asking questions or second guessing ANYONE. as a parent we are suppose to do everything for our kids, everything! Even if that means get a 5Th opinion!
Well I sit here this morning taking a few to take into my head and heart some feelings....WOW, not long and we will be in DENVER!
There is a girl on face book who I recently have become friends with...She is a 35 year old adult....beautiful adult. Of course I looked at all her wedding pictures...go straight to her ear to see if her aids were noticeable...isn't that was we all do? ha ha, well this mother has those things on her mind, I guess it seems normal to me. Anyway, her implant was turned on the 24Th of January. She shares a video of activation day...WOW, I have watched it 7 times, and I cry harder each time! I hear her voice, which seems to be great...then I think of Aubrey...will she have this reaction? will it be this moving for her?
I must be honest and also share that i think back to ALL the audiologists we have had....I want to tell them all and i mean ALL how and where we are today is NOT because of ANYTHING they have done. I think back to ALL and I mean all...Audie's and speech therapists and I think....why? I think...in your face! I think...wow, I feel so sorry for those who are still in with them. Especially our first Audiologist. I wasted 10 years with that woman, she did nothing but make me feel like a bad parent. Like I was wrong for going to family learning weekends with Aubrey in Greatfalls at the school for the deaf and blind. I never had a true understanding of Aubrey's hearing loss...I had to beg for information...I was at this woman's mercy for all the wrong reasons. Skip a few...move on to the last audiologist we had in Missoula. I thought he was amazing. He had hard of hearing daughter, i thought...OKAY this man understands and truly knows this road. Well for about a year he was great! Then when i got more "in your face"...her hearing was changing almost weekly, his attitude changed. I personally wonder how much it has to do with him working THE doctor in the state of Montana who does cochlear implant surgeries. This doctor mind you REFUSED to implant Aubrey. He actually called me the night before we left for Denver and let me know how he felt! yeah...like I cared, He had made it sound as if he had been apart of our "team" for years...when in fact i had only seen him 3 times in Aubrey's 13 years of life!
~Sorry, getting wrapped up in my thoughts.....what is the most important thing here? that is I can honestly say, looking back, we have done nothing but advocate for our kids, and I will never apologize for asking questions or second guessing ANYONE. as a parent we are suppose to do everything for our kids, everything! Even if that means get a 5Th opinion!
Thursday, February 10, 2011
March 14th is OUR big day~ Surgery is at 830 we check into the hospital at 630AM. We will stay in Denver for 2-3 weeks. The plan is to implant Aubrey, let the incision heal....at the end of the two weeks activate her implant and see the audiologist two times before leaving, heading back to Montana. Then we will go back within 4-6 weeks. That is when they (audilogist) can do some fine tuning and tweaking to the CI...Aubrey is going to be able to really give us positive feedback, what she is and isn't hearing.....this day is so close but yet so far away! I am so nervous, excited and terrified in so many ways! I can only imagine what Aubrey feels :) I promise to blog daily...to share our journey with you all.
Wednesday, February 2, 2011
╔════════════ ೋღ☃ღೋ ════════════╗
☼ How lucky am I to have amazing kids ☼
╚════════════ ೋღ☃ღೋ ════════════╝
~~Well, yesterday I got a call from Lewis and Clark (Madie's School) saying "Allie, not sure if this is good news or bad...but someone found the LOST hearing aid" HOLY BANANA'S, really? it was found? WOW, never in the 13 years I have been dealing with hearing aids has one appeared without a "finders prize" wow, THANK YOU to whoever found the long lost purple hearing aid. So we are now the proud owners of TWO hearing aids for Madie...so if by chance we lose that aid AGAIN (SHH don't even think it) we will have a back up!
~~On another note, I still have yet to hear from Children's Hospital, about scheduling for this CI surgery. Ugh, does not everyone know I have the patience of a 3 month old child? this is killing me. I did get in my fortune cookie yesterday that "this months travels will bring you much happiness" YES IT WILL, so I am going to continue to hope that they HURRY IT UP and call me!
~~Aubrey has really gotten into Volleyball, she is such a natural, she is NOT afraid of the ball..she is aggressive and really tries to do her best! I so enjoy going to her games and cheering her on! This Saturday is pictures...yeah my wall will get a new picture! also next week are spring pictures for both girls at school...YEAH:)
~~The move is done! I said DONE...all that is left is unpacking and putting things where they need to be. But let me say, I love my house! the other day when the cable guys left, i walked upstairs and thought...geesh those guys left a light on...and NOPE, it was the sunset peaking in ALL the windows. Wow it is so bright and cheery here! I am so happy to be done with MOLDY HOUSE!
☼ How lucky am I to have amazing kids ☼
╚════════════ ೋღ☃ღೋ ════════════╝
~~Well, yesterday I got a call from Lewis and Clark (Madie's School) saying "Allie, not sure if this is good news or bad...but someone found the LOST hearing aid" HOLY BANANA'S, really? it was found? WOW, never in the 13 years I have been dealing with hearing aids has one appeared without a "finders prize" wow, THANK YOU to whoever found the long lost purple hearing aid. So we are now the proud owners of TWO hearing aids for Madie...so if by chance we lose that aid AGAIN (SHH don't even think it) we will have a back up!
~~On another note, I still have yet to hear from Children's Hospital, about scheduling for this CI surgery. Ugh, does not everyone know I have the patience of a 3 month old child? this is killing me. I did get in my fortune cookie yesterday that "this months travels will bring you much happiness" YES IT WILL, so I am going to continue to hope that they HURRY IT UP and call me!
~~Aubrey has really gotten into Volleyball, she is such a natural, she is NOT afraid of the ball..she is aggressive and really tries to do her best! I so enjoy going to her games and cheering her on! This Saturday is pictures...yeah my wall will get a new picture! also next week are spring pictures for both girls at school...YEAH:)
~~The move is done! I said DONE...all that is left is unpacking and putting things where they need to be. But let me say, I love my house! the other day when the cable guys left, i walked upstairs and thought...geesh those guys left a light on...and NOPE, it was the sunset peaking in ALL the windows. Wow it is so bright and cheery here! I am so happy to be done with MOLDY HOUSE!
Friday, January 21, 2011
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!
~~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!
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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