Excellent video recap of 10 year old girl's story of having her CI activated. I LOVE these stories for many reasons, but it's always so touching to hear what it's like from someone older since Aiden could not tell us what the whole experience was like going from silence to sound.
http://www.wfaa.com/news/Girls-video-diary-chronicles-her-struggle-to-hear-153311365.html
She heard herself breathing for the first time ... something that seems so simple ...
I challenge you to stop today. Stop and listen. Take in all the sounds around you that so many never get to hear. What are some of your favorite sounds?
Showing posts with label activation. Show all posts
Showing posts with label activation. Show all posts
Thursday, May 24, 2012
Sunday, May 6, 2012
a song. a story. a memory.
Just had to share this SIMPLY.AMAZING video. The perseverance, determination, and hope this sweet boy and his family have shine through and through.
The whole thing is weighing heavy on my heart .... how every hearing journey can be SO different, yet SO very much the same,
the WE WON'T GIVE UP states of mind ... the determination, the TEARS,
theYEARS of therapy ... the hope, the WANT ...
the ELATION as they reach each and every little (yet so big ) milestone that you work so hard to reach. how HARD all our sweet ones work.
Then there's the song.
The song is Fix You by Coldplay. This song reminds me so much from the past four years. I used to listen to this song, along with others from Cold Play, over and over, as I would go on long walks, pregnant with Aiden, after spending afternoons with my father (who had severe dementia and was in a nursing home at the time). I'd walk and cry. I continued to listen to this song after I found out Aiden was deaf and all throughout this journey. I haven't heard it in quite awhile, so this song + this video = many tears. It reminded me of how much we've been through, how much we've overcome, and how far we still have to go. It also reminded me, we're not alone.
and what the parents of this video say in the end, is so true .... siblings, jobs, sports, school .... and a lot of therapy in between it all ... LIFE GOES ON.
Be prepared. Grab a tissue. (and turn off the music on the right before playing).
Be prepared. Grab a tissue. (and turn off the music on the right before playing).
Tuesday, March 22, 2011
Two Years Hearing
I will never forget the day I held Aiden in my arms, just hours after his "profound hearing loss" diagnosis. I muted the television as I called for Ryan. As I waited, I sat in complete silence admiring my sleeping baby, then looked back up at the tv. I will NEVER forget that moment. My stomach completely churned as I sat there and watched the people on tv, their lips moving, - I could tell they were arguing, things happening all around, yet I heard nothing. It was then that Aiden's reality hit me - his world was SILENT. My heart raced, dropped into my stomach. I felt sick, like I was punched in the stomach. I couldn't fathom my son in a silent world. My mind raced - he may never hear my voice, and just the same, I may never hear his. This couldn't be happening.
I was TERRIFIED.
Today, as I look back over Aiden's hearing journey, I take a long deep breath. It's been a long haul, some parts of the journey smooth, other parts bumpy, we've hit dead ends and forks in the road with no clue which way to go. It's been full of running to nonstop appointments; understanding his equipment, mapping sessions and FM systems; attending seminar after seminar learning all about Aiden's world and HOW to speak to our son in order to create a language rich environment; then add in daily Ling checks and learning to listen sounds and experience books. Overwhelming to say the least.
Most of all though it's keeping HOPE and FAITH, knowing our son will hear and speak, that he will attend mainstream school and be as much a part of this hearing world as the rest of his hearing family. We know the "equipment" alone will not accomplish this - it is up to us, his family, to TEACH him, to guide him, not only to listen and to speak, but to cherish the beautiful sounds our world has to offer.
and that's what we've been doing, as his family, for the past three years - taking each day as a new day, step by step, showing Aiden the way.
So today, when I think back over the past three years (two years hearing), I cry. Not tears of sadness, but tears of complete and pure happiness. This journey is not a sad one - it is a JOYOUS one - as we watch Aiden discover new sounds, speak new words, SING, and DANCE. This journey is not an easy one - it is a lot of hard work - but every ounce of effort, every sleepless night, every bit of research to find new language and listening activities is worth hearing that sweet little voice. This journey is not a sprint - it is a marathon - and we still have a long ways to go. This journey is - SIMPLY AMAZING - as we watch Aiden do things every.single.day that at one time, we thought he'd never do.
In honor of Aiden's two years hearing (which was actually March 9th -just catching up), I've attached some of my personal favorite SIMPLY.AMAZING Aiden moments. Smile with me as you watch just how far our boy has come in his hearing journey. We are so proud of you Aiden Robert!
Aiden's First CI Activation
Four Months Hearing - Aiden's First Word
10 Months Hearing - Face Parts
13 Months Hearing - "Ryan"
18 Months Hearing - "It's Stuck"
22 Months Hearing - "How are you?"
Thursday, April 2, 2009
Tiring Week ... but He's Bilateral!
Our binky boy is now bilateral! He has both his "ears" turned on. I wish I could type this all with more excitement and happier emotions. It's just not there, not right now. Don't get me wrong, I feel so blessed that we live in today's age where my child has the opportunity to take advantage of such wonderful technology; I thank God everyday for Aiden and what he's brought to our life. But truth of the matter is, this week has brought tears, struggles, and heartache.
I'm sure a lot of it has to do with the lack of sleep I've had all week. Aiden's been sick and not his usual animated self. At his activation, his audiologist checked his ears and they were all clear. That night his fever spiked to 101. I blamed it on teething, because his fever went away. When nighttime fell again though, we started the sleep fight all over and after today's dr. appt. and 101.8 fever, we confirmed the ear infection made it's way through.
Anyway, for the first time in a long time, I cried. I cried seeing all this equipment on my son. I cried thinking about how I shouldn't look at his CIs as all this "equipment" but as the miracle they are that allows my son to hear my voice and all the beautiful sounds this world has to offer. I cried at the fact that as long as he wants to hear, he will always have to wear something on his ears ... this isn't a quick fix ... this is for life. I cried because my son is deaf and I hate it.
Not really.
Well I do, but I don't. Clear as mud? Of course I wish Aiden didn't have to go through all of this. Of course I wish Aiden didn't have to wear all this "equipment" to hear, having to crawl around with all these wires hanging off of him, ripping off his "ears" as he tries to crawl, me constantly behind him putting an "ear" back on. Of course I wish that I knew that he was going to be okay and that I could protect him from kid's mean words and adults staring, and all the therapy, and appointments, and hard work he's about to go through for many years so he can learn to listen and speak. Of course I wish I could hear Aiden babbling, saying mama and dada, and nonstop chit chatting that one years old do, when all he does right now is grunt and moan. GRUNT and MOAN. He was babbling more with his hearing aids. Every once in awhile now he lets out a mixture of sounds and I just savor the sound of his voice. SAVOR EVERY BIT OF IT. But it's very far and few in between right now. Of course I wish we weren't back to square one again.
Of course I wish AIDEN WASN'T DEAF.
But he is.
and it sucks ...
... at least for this week. and maybe next. I truly haven't had a moment like this since this day just a short month and a half after we found out Aiden was deaf. I think I've just been going so nonstop focusing on preparing him (and us) for the CI world. Staying positive ... moving forward to our new world. I have to remind myself, it's okay to have days (or multiple days in this case) like this. Obviously there's no changing who he is and honestly ...
I WOULDN'T CHANGE HIM FOR THE WORLD!
I truly wouldn't, except that he would be able to hear. Honestly. Yet I know he is who he is and he's brought so much to our life. God blessed us with three beautiful children, and for some reason, chose Aiden's daddy and I to raise each of them. So even with all my tears, all my sorrow, all my wondering why, I am so happy he has blessed our lives. I know he's going to be okay.
Just watch. His personality, his determination and his fight (that is fighting mom trying to put on those damn processors on his ears ... man it's such a fight) reminds me everyday-this kid's going to be just fine. It's just been one of those weeks.
Here's his left ear activation video. Here's my baby ... my deaf baby listening with his left ear for the first time. (turn off the music on the right. And sorry about the wobbly video taking ... I don't have a steady hand like Aiden's daddy when it comes to video cameras!)
I am having trouble with Overstream to caption this right now. There are only a few beeps here and there and then at the end, Aiden's daddy is talking to him about the pop up toy as we watched for voice responses.
I'm sure a lot of it has to do with the lack of sleep I've had all week. Aiden's been sick and not his usual animated self. At his activation, his audiologist checked his ears and they were all clear. That night his fever spiked to 101. I blamed it on teething, because his fever went away. When nighttime fell again though, we started the sleep fight all over and after today's dr. appt. and 101.8 fever, we confirmed the ear infection made it's way through.
Anyway, for the first time in a long time, I cried. I cried seeing all this equipment on my son. I cried thinking about how I shouldn't look at his CIs as all this "equipment" but as the miracle they are that allows my son to hear my voice and all the beautiful sounds this world has to offer. I cried at the fact that as long as he wants to hear, he will always have to wear something on his ears ... this isn't a quick fix ... this is for life. I cried because my son is deaf and I hate it.
Not really.
Well I do, but I don't. Clear as mud? Of course I wish Aiden didn't have to go through all of this. Of course I wish Aiden didn't have to wear all this "equipment" to hear, having to crawl around with all these wires hanging off of him, ripping off his "ears" as he tries to crawl, me constantly behind him putting an "ear" back on. Of course I wish that I knew that he was going to be okay and that I could protect him from kid's mean words and adults staring, and all the therapy, and appointments, and hard work he's about to go through for many years so he can learn to listen and speak. Of course I wish I could hear Aiden babbling, saying mama and dada, and nonstop chit chatting that one years old do, when all he does right now is grunt and moan. GRUNT and MOAN. He was babbling more with his hearing aids. Every once in awhile now he lets out a mixture of sounds and I just savor the sound of his voice. SAVOR EVERY BIT OF IT. But it's very far and few in between right now. Of course I wish we weren't back to square one again.
Of course I wish AIDEN WASN'T DEAF.
But he is.
and it sucks ...
... at least for this week. and maybe next. I truly haven't had a moment like this since this day just a short month and a half after we found out Aiden was deaf. I think I've just been going so nonstop focusing on preparing him (and us) for the CI world. Staying positive ... moving forward to our new world. I have to remind myself, it's okay to have days (or multiple days in this case) like this. Obviously there's no changing who he is and honestly ...
I WOULDN'T CHANGE HIM FOR THE WORLD!
I truly wouldn't, except that he would be able to hear. Honestly. Yet I know he is who he is and he's brought so much to our life. God blessed us with three beautiful children, and for some reason, chose Aiden's daddy and I to raise each of them. So even with all my tears, all my sorrow, all my wondering why, I am so happy he has blessed our lives. I know he's going to be okay.
Just watch. His personality, his determination and his fight (that is fighting mom trying to put on those damn processors on his ears ... man it's such a fight) reminds me everyday-this kid's going to be just fine. It's just been one of those weeks.
Here's his left ear activation video. Here's my baby ... my deaf baby listening with his left ear for the first time. (turn off the music on the right. And sorry about the wobbly video taking ... I don't have a steady hand like Aiden's daddy when it comes to video cameras!)
I am having trouble with Overstream to caption this right now. There are only a few beeps here and there and then at the end, Aiden's daddy is talking to him about the pop up toy as we watched for voice responses.
Tuesday, March 10, 2009
ACTIVATION DAY!
Oh my! What a day yesterday was! Aiden did an awesome job at activation and had some truly fabulous responses! All in all it was, as my daughter always says, THE BEST DAY EVER!
When I posted the other day about being "slapped back into reality" of Aiden's deafness, well, yesterday was so exciting that him being deaf was the last thing on my mind ... because all I could think about was what a fantastic listening journey we have ahead of us! This is all so surreal ... all day I couldn't believe we were finally at this point! We have so much fun and exciting times ahead of us!
Aiden is just such a happy-go-lucky kid. We truly are blessed. When our audiologist first started the sounds, Aiden didn't do too much, but then started pointing to his ear a bit (he used to do the same thing in the soundbooth with his hearing aids). After the first couple of tones were played, everytime he heard a sound he'd try to rip the coil off his head. We went through many listening activities, starting with tones, then onto voice, then onto instrument noises. I captured a little bit of each in the video.
Keep in mind as you watch that the Nat. Geo. photographers were there shooting pictures for the article Aiden's being featured in (coming out late this year). Aiden really took to one of the photographers last time he was here, and it was amazing how Aiden remembered "the man with the camera" and was instantly drawn to him again! What can I say ... my boy loves the camera!
At the end of the video I posted a bit of Aiden just crawling around with his new "ear" while our audiologist explained the HUGE suitcase of goodies and information with us. All the while I thought this "suitcase" included merchandise for both ears ... NOPE ... we'll get a whole other one during Aiden's second CI activation! I need to find the time tonight to just sit down and go through it all. Wow there's so much to learn still! But I am SOOOO ready to get this show on the road!
At the end, our simply amazing surgeon, Dr. Niparko, came by to see how everything went and take a peek into Aiden's ears. He said the left side is still a bit swollen, but it should be gone within the week and that everything looked great! We snapped some pictures with our team and then headed home. As soon as Aiden hit his carseat, he was out cold! He was so wiped from all that hearing!
When Aiden's big brother and sister got home they both ran up to him to check out all his new equipment. He didn't have it on at the time, but they couldn't wait for me to put on his new magic ears so they could talk to him and see his reactions! They both talked sweet nothings into his ear and gave him lots of lovin'! I loved seeing their enthusiasm for their little brother ... another favorite moment from today!
Remember, this was Aiden's first programming session (mapping). So right now, the sounds he hears are pretty soft still. Our audiologist said that they may sound like Donald Duck or Mickey Mouse to him at this point, but over time, he will start to put meaning to each sound he hears and things will become clearer; this is why therapy is so important. We go back this Wednesday and then again a week from Wednesday to "turn him up".
I had a nice conversation with our audiologist yesterday too about activating his left ear. After talking to her, I really do understand her reasoning on wanting to get a good stable map on the right ear before activating the left. So we're going to take it step by step over the next week and see how Aiden does and then plan the second activation. I feel good with this and like I told her ... it's Aiden ... our little superstar ... and he's going to do absolutely fantastic! *SMILE*
(Make sure you turn off the music on the right before playing the video. This video is not captioned yet).
When I posted the other day about being "slapped back into reality" of Aiden's deafness, well, yesterday was so exciting that him being deaf was the last thing on my mind ... because all I could think about was what a fantastic listening journey we have ahead of us! This is all so surreal ... all day I couldn't believe we were finally at this point! We have so much fun and exciting times ahead of us!
Aiden is just such a happy-go-lucky kid. We truly are blessed. When our audiologist first started the sounds, Aiden didn't do too much, but then started pointing to his ear a bit (he used to do the same thing in the soundbooth with his hearing aids). After the first couple of tones were played, everytime he heard a sound he'd try to rip the coil off his head. We went through many listening activities, starting with tones, then onto voice, then onto instrument noises. I captured a little bit of each in the video.
Keep in mind as you watch that the Nat. Geo. photographers were there shooting pictures for the article Aiden's being featured in (coming out late this year). Aiden really took to one of the photographers last time he was here, and it was amazing how Aiden remembered "the man with the camera" and was instantly drawn to him again! What can I say ... my boy loves the camera!
At the end of the video I posted a bit of Aiden just crawling around with his new "ear" while our audiologist explained the HUGE suitcase of goodies and information with us. All the while I thought this "suitcase" included merchandise for both ears ... NOPE ... we'll get a whole other one during Aiden's second CI activation! I need to find the time tonight to just sit down and go through it all. Wow there's so much to learn still! But I am SOOOO ready to get this show on the road!
At the end, our simply amazing surgeon, Dr. Niparko, came by to see how everything went and take a peek into Aiden's ears. He said the left side is still a bit swollen, but it should be gone within the week and that everything looked great! We snapped some pictures with our team and then headed home. As soon as Aiden hit his carseat, he was out cold! He was so wiped from all that hearing!
When Aiden's big brother and sister got home they both ran up to him to check out all his new equipment. He didn't have it on at the time, but they couldn't wait for me to put on his new magic ears so they could talk to him and see his reactions! They both talked sweet nothings into his ear and gave him lots of lovin'! I loved seeing their enthusiasm for their little brother ... another favorite moment from today!
Remember, this was Aiden's first programming session (mapping). So right now, the sounds he hears are pretty soft still. Our audiologist said that they may sound like Donald Duck or Mickey Mouse to him at this point, but over time, he will start to put meaning to each sound he hears and things will become clearer; this is why therapy is so important. We go back this Wednesday and then again a week from Wednesday to "turn him up".
I had a nice conversation with our audiologist yesterday too about activating his left ear. After talking to her, I really do understand her reasoning on wanting to get a good stable map on the right ear before activating the left. So we're going to take it step by step over the next week and see how Aiden does and then plan the second activation. I feel good with this and like I told her ... it's Aiden ... our little superstar ... and he's going to do absolutely fantastic! *SMILE*
(Make sure you turn off the music on the right before playing the video. This video is not captioned yet).
Sunday, March 8, 2009
HEAR We Go!
Does that ticker really say 1 more day until Aiden's activation!?!?! I can't believe it's finally our turn! During this journey, I have met many families with deaf/hoh children with CIs and I've watched many activation videos, with tears, feeling like our day was never going to come! AND HERE WE ARE! It's Aiden's turn to hear!
My stomach is a mess. Aiden's daddy & I just got done reading a 70 page "users manual" on the Nucleus Freedom by Cochlear, watched a bunch of CI activation videos, and reread other's blog stories, all to prepare for what we're about to learn tomorrow. I'm wondering if I should have bought batteries already, wondering if I should already have a dry aid kit, wondering a whole lot that I wish I would've already asked. The whole process scares me. I remember being terrified about being able to take care of Aiden's hearing aids, but Cochlear implants are a whole new ballgame!
I remember how scared I was the days before Aiden's first hearing birthday, the day he got his hearing aids. I was scared the aids would be a constant visual reminder that my baby is deaf. There hasn't been one day that's gone by since that moment that I don't think of him being deaf, what his world is like. The aids reminded me everyday that with a lot of hard work, my baby could hear and speak. We've worked hard this year to stimulate that hearing nerve, to get any sound to him. Tomorrow we're getting another visual reminder ... the external parts of his implant, yet this time, it's different. We have some experience under our belts, we have some clue of the hard work we have ahead of us, it's very exciting. Yet, in the same breath, it's another slap back to reality ... Aiden is and always will be deaf. If he wants to hear, he will always have to wear some sort of device. Another visual for questions, for teasing ... but we're ready for it all and thank God everyday for the blessings in our life.
We're going to do our best to tape it (I have two video cameras ready to go) and I will post his video as soon as I get a chance. I have no clue what Aiden's reaction is going to be, but no matter what, we know we have an amazing journey ahead of us. We thank all of you for your prayers, well wishes, and being a part of Aiden's journey to hear. HEAR WE GO!
My stomach is a mess. Aiden's daddy & I just got done reading a 70 page "users manual" on the Nucleus Freedom by Cochlear, watched a bunch of CI activation videos, and reread other's blog stories, all to prepare for what we're about to learn tomorrow. I'm wondering if I should have bought batteries already, wondering if I should already have a dry aid kit, wondering a whole lot that I wish I would've already asked. The whole process scares me. I remember being terrified about being able to take care of Aiden's hearing aids, but Cochlear implants are a whole new ballgame!
I remember how scared I was the days before Aiden's first hearing birthday, the day he got his hearing aids. I was scared the aids would be a constant visual reminder that my baby is deaf. There hasn't been one day that's gone by since that moment that I don't think of him being deaf, what his world is like. The aids reminded me everyday that with a lot of hard work, my baby could hear and speak. We've worked hard this year to stimulate that hearing nerve, to get any sound to him. Tomorrow we're getting another visual reminder ... the external parts of his implant, yet this time, it's different. We have some experience under our belts, we have some clue of the hard work we have ahead of us, it's very exciting. Yet, in the same breath, it's another slap back to reality ... Aiden is and always will be deaf. If he wants to hear, he will always have to wear some sort of device. Another visual for questions, for teasing ... but we're ready for it all and thank God everyday for the blessings in our life.
We're going to do our best to tape it (I have two video cameras ready to go) and I will post his video as soon as I get a chance. I have no clue what Aiden's reaction is going to be, but no matter what, we know we have an amazing journey ahead of us. We thank all of you for your prayers, well wishes, and being a part of Aiden's journey to hear. HEAR WE GO!
Thursday, January 22, 2009
FRUSTRATED
I woke up this morning in a funk. Actually, I've been struggling to get out of this funk for a couple days now. I think it's a combination of a lot of things. Besides not having my "best g's" here to go drink some wine with and get all this BS off my chest, one year ago this Saturday my dad died (I have his bottle of Black Velvet - YUCK - just waiting for a shot to cheer his life) AND most of all I found out a couple days ago that they plan on activating my son's implants well over six weeks apart! What the hell!
A little background. Aiden's getting simultaneous cochlear implants, meaning, they are implanting both ears at the same time. This is not the norm, but becoming more so. Typically, if a child is getting both ears implanted, they are implanted sequentially, whether within a few months of each other or even a year or more of each other. We knew if we were to go bilateral with Aiden, we wanted them done simultaneously for two reasons; one, this would mean only one surgery and two, he would be hearing from both ears within days of each other.
At Aiden's last soundbooth, they gave me his appointments for activating his implants. The CI center we chose, doesn't activate the implants (turn them on) for three to four weeks from surgery to begin with and does not turn on both ears together. So they scheduled Aiden's first activation for March 9th and what we thought the second to be, March 18th. We were ok with this, not extremely excited, but it didn't run us off (a lot of centers will activate within days or couple weeks after surgery and activate both ears at the same time, or within a couple days of each other). They explained they like to make sure the first ear's maps (programming the implant is called "mapping" and it takes a few appointments to get the maps where they need to be in order for the recipient to be successful in learning to hear) were established prior to mapping (or programming/turning on) the second ear to hear.
Come to find out, Aiden is not scheduled for his second ear's activation until April 27th! I was under the assumption this would be a week apart, two at the most. Not over six. This also means that one ear will go with NO SOUND WHAT-SO-EVER from Feb. 11th to April 27th. This is not okay with me! So I sought out the help of the powers to be from CiCircle (an awesome Yahoo group of parents with children who have cochlear implants) and asked what other parents had experienced when it came to simultaneous implants. They answered as expected ... their child's "ears" had been "turned on" the same day OR within days of each other so both ears could learn together.
I'm not a confrontational person. In fact, I hate debating, arguing, or anything that could possibly bring on a disagreement. BUT, this is MY SON. If I learned anything during my dad's illness it was that he couldn't fight for himself and if I didn't fight for him, nobody would, I learned to become confrontational, in the right way (and sometimes not so right way). Same with Aiden, he cannot fight for himself, so if I don't advocate for him, who will? This has been weighing on my mind and it upsets me the more I think about it. Am I overreacting? Should I just be happy we have the surgeon we wanted since day one and be happy he still only needs one surgery? I always hate to feel selfish, that I should just be lucky my son's getting implants at all.
But honestly, why even get simultaneous implants if they're not going to turn on both ears within at least a week of each other! The whole thought process is for both ears to start hearing at the same time, and the more I think about it, the more upset I get, and the more I want BOTH ears activated on the same day! Why not? Then Aiden will begin learning to localize sound immediately and will go through therapy using BOTH ears - IMMEDIATELY, instead of teaching one ear for over 6 weeks and then having to turn around, turn off the first ear, and teach the second ear what the first just learned!
So what to do. I've been going round and round in my mind how to address this. We like our CI center, we like our team. Do I just trust them and go with it? Or do I follow my mom instinct and fight it? I know what I have to do. It's for Aiden. It's for his hearing. We've been working our booties off all year and if he's getting both ears implanted at the same time, they should be turned on at the same time. There always has to be a "first" for everything, right? Maybe Aiden will be the first at our center to have both ears activated the same day. Who knows. I do know this though, if I don't fight for my baby, no one else will.
Wish me luck. Oh - and any suggestions or advice on how to handle this/why same day activation is best is always greatly appreciated!
A little background. Aiden's getting simultaneous cochlear implants, meaning, they are implanting both ears at the same time. This is not the norm, but becoming more so. Typically, if a child is getting both ears implanted, they are implanted sequentially, whether within a few months of each other or even a year or more of each other. We knew if we were to go bilateral with Aiden, we wanted them done simultaneously for two reasons; one, this would mean only one surgery and two, he would be hearing from both ears within days of each other.
At Aiden's last soundbooth, they gave me his appointments for activating his implants. The CI center we chose, doesn't activate the implants (turn them on) for three to four weeks from surgery to begin with and does not turn on both ears together. So they scheduled Aiden's first activation for March 9th and what we thought the second to be, March 18th. We were ok with this, not extremely excited, but it didn't run us off (a lot of centers will activate within days or couple weeks after surgery and activate both ears at the same time, or within a couple days of each other). They explained they like to make sure the first ear's maps (programming the implant is called "mapping" and it takes a few appointments to get the maps where they need to be in order for the recipient to be successful in learning to hear) were established prior to mapping (or programming/turning on) the second ear to hear.
Come to find out, Aiden is not scheduled for his second ear's activation until April 27th! I was under the assumption this would be a week apart, two at the most. Not over six. This also means that one ear will go with NO SOUND WHAT-SO-EVER from Feb. 11th to April 27th. This is not okay with me! So I sought out the help of the powers to be from CiCircle (an awesome Yahoo group of parents with children who have cochlear implants) and asked what other parents had experienced when it came to simultaneous implants. They answered as expected ... their child's "ears" had been "turned on" the same day OR within days of each other so both ears could learn together.
I'm not a confrontational person. In fact, I hate debating, arguing, or anything that could possibly bring on a disagreement. BUT, this is MY SON. If I learned anything during my dad's illness it was that he couldn't fight for himself and if I didn't fight for him, nobody would, I learned to become confrontational, in the right way (and sometimes not so right way). Same with Aiden, he cannot fight for himself, so if I don't advocate for him, who will? This has been weighing on my mind and it upsets me the more I think about it. Am I overreacting? Should I just be happy we have the surgeon we wanted since day one and be happy he still only needs one surgery? I always hate to feel selfish, that I should just be lucky my son's getting implants at all.
But honestly, why even get simultaneous implants if they're not going to turn on both ears within at least a week of each other! The whole thought process is for both ears to start hearing at the same time, and the more I think about it, the more upset I get, and the more I want BOTH ears activated on the same day! Why not? Then Aiden will begin learning to localize sound immediately and will go through therapy using BOTH ears - IMMEDIATELY, instead of teaching one ear for over 6 weeks and then having to turn around, turn off the first ear, and teach the second ear what the first just learned!
So what to do. I've been going round and round in my mind how to address this. We like our CI center, we like our team. Do I just trust them and go with it? Or do I follow my mom instinct and fight it? I know what I have to do. It's for Aiden. It's for his hearing. We've been working our booties off all year and if he's getting both ears implanted at the same time, they should be turned on at the same time. There always has to be a "first" for everything, right? Maybe Aiden will be the first at our center to have both ears activated the same day. Who knows. I do know this though, if I don't fight for my baby, no one else will.
Wish me luck. Oh - and any suggestions or advice on how to handle this/why same day activation is best is always greatly appreciated!
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