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!