#17 (ACTIVATION!)

Finnegan is activated! His Cochlear Implants were turned on Friday, March 14th. It has been a packed couple of weeks since then so it has taken me a while to write about that special day and the special days that have followed.

The morning of the 14th was filled with happy, nervous stress. I think there was more emotion surrounding this day than the day of the surgery. Where the surgery was pretty much limited to anxiety and worry about complications, this day came with a sense of anticipation that we couldn’t really put into words. Take that feeling you had when you were a kid on Christmas Eve and multiply it by about a billion and that might be the closest I can come to explaining it. There was also some fear in a way. What if something went wrong? There was absolutely no scientific reason for us to worry that it wouldn’t work, but that didn’t stop us!

Dan, my brother (also Dan), Finnegan, and I drove down to Children’s Hospital in Waltham around noontime- this will be the office that we will spend the majority of Finn’s visits until he is an adult; seeing as we will be going in every 3 to 6 months, it’s very convenient not to have to go into Boston each time! This visit might have been the first doctor’s appointment that we’ve ever been watching the clock waiting to LEAVE and not watching it and counting how many minutes late we would be haha.

We arrived at Children’s for the appointment that would change Finn’s life forever…below is a video I put together of the appointment- I know many people saw the raw footage on Facebook, so I made my first attempt at video editing and created a video that I hope helps people understand the process better than just the long-winded annotations I had on the original post. Enjoy!

After posting the original video on Facebook, we had an overwhelming amount of responses. We want to thank everyone for their encouragement and for sharing in our family’s special moment.

One thing that I found interesting about myself was that on activation day, when so many other people were sharing with us how they were moved to tears by the video of Finn, I had yet to have that outpouring of emotion. I don’t know if I was still taking it all in or what, but my moment didn’t come until that Sunday.

I was up at 4am with Finn (he decided he wanted to play at that time!) and we were hanging out together. I put his CIs on and turned them up to the next volume level as the doctor had instructed to do when he woke up on Sunday. Right away he clapped and smiled, as if he had been waiting all night to try out that hearing thing again: ) So we started playing and he accidentally bit his own finger. He started crying really loudly so I did what I usually do- bounced him a bit, signed to him that he was going to be okay- and then it hit me; I could sing to him and he would hear me! I started singing the same lullaby that used to soothe Kayla at that age and he immediately stopped crying, grabbed my face with his hands, pulled me in really closely to his face, and gave me the BIGGEST smile and started giggling like crazy!!!! That moment will be burned into my memory for the rest of my life. I just started bawling my eyes out, trying to maintain the lullaby, and then he’d smile again and I would lose it again!

Right after that happened, it inspired me to experiment with other music. Unlike some babies with hearing loss, even with his hearing aids in, Finn never picked up on any musical notes (or any sounds for that matter) that we know of- something that was very hard for me with my love of music. After seeing his reaction to my singing, I remembered someone recently saying online how the newest Cochlear Implants, the ones that Finnegan has ( Naida CI Q70 ) is the first CI that makes music actually sound like music. In the past, even with CIs, the quality of music for a lot of people (or so I have read) was extremely poor.

I decided to experiment with a music video that Kayla LOVED at that age. It’s Jack Johnson (of course!) in his video for “Upside Down” from the Curious George soundtrack:

The video gets cut off because I jumped up and down with excitement, but you can see the HUGE grin on his face! This reaction is from a kid who NEVER before today paid any attention to the T.V. or computer no matter how colorful or exciting it looked.

The morning only got better when Kayla walked down the stairs and came up behind Finn and said “Good Morning, Finnegan!” and he turned to her and smiled! It might seem like a small thing, but for him to acknowledge someone new is in the room is such a big deal to us.

The following week was filled with a new surprise and discovery every day. By that Thursday during his AVT Speech Therapy session, he was already mimicking one of the sounds – after just 6 days of hearing!! The therapist was extremely impressed with his progress, and we are so proud of him and, I have to admit, proud of ourselves for sticking with all the pre-therapy, even though at times it seemed really ridiculous to be doing speech therapy with someone who couldn’t hear. It was definitely beneficial though and we are seeing those benefits now.

Today was his first “mapping” session. Mapping (or MAPping) is the term for programming a cochlear implant to the specifications and needs of its user. Also, just because this is probably the number one question I get asked, here is another, very brief video explaining just how a Cochlear Implant works:

http://cochlearimplantonline.com/site/cochlear-implant/how-does-cochlear-implant-work/

 

Finnegan will have frequent mappings done at first and then he will have them done every 3 to 6 months forever. Each time, the audiologist will help make his hearing even more fine tuned for his individual needs. Yeah Science! (Almost added a very funny Breaking Bad meme here, but my students have told me they started reading my blog, so I’m going to keep it PG : )

The last few weeks have not exactly been easy between the surgery, the dreaded MCAS testing at school, recurring stomach bugs and head colds, and this never-ending winter, but it has been very easy to get myself out of any bad mood by taking about 30 seconds to think about the absolute miracle of a gift our family has been given. What a world we live in that a person can be born deaf and then have a computer implanted in his brain to make him hear again! It is way to easy for me to be dismissive of modern technology and take it for granted when I can do just about anything, anytime by pulling my phone out of my pocket, but when I really stop and think about how different our lives, Finn’s life, would be 50 (or even 15!) years ago, it astonishes me.

Tonight I leave you with some pictures of the “swag bags” from Advanced Bionics (the backpacks filled with a billion pieces and parts for the CIs) and some of Finn over the last couple of weeks. 

A still picture of Finn's activation and listening to me in the first few minutes of hearing.

A still picture of Finn’s activation and listening to me in the first few minutes of hearing.

 

Finn's audiologist and her assistant (Finn was flirting up a storm with the assistant!)

Finn’s audiologist and her assistant (Finn was flirting up a storm with the assistant!)

Handmade band- made by Dan - to hold the CIs when nothing else was working!

Handmade band- made by Dan – to hold the CIs when nothing else was working!

My loves. <3

My loves. ❤

Swag Bags from AB FILLED with pieces and parts for the CIs and a hanging organizer to keep everything straight.

Swag Bags from AB FILLED with pieces and parts for the CIs and a hanging organizer to keep everything straight.

The Compilot- connects the CIs to a bunch of other devices directly! (The TV, Radio, Cellphone, Bluetooth, and tons more!)

The Compilot- connects the CIs to a bunch of other devices directly! (The TV, Radio, Cellphone, Bluetooth, and tons more!)

Battery charging and processor drying station. The Zephyr is like a super-high-tech electronic dehumidifier. Pretty cool.

Battery charging and processor drying station. The Zephyr is like a super-high-tech electronic dehumidifier. Pretty cool.

They look big on him now, but I'm sure with his Irish blood, his head will grow into them : )

They look big on him now, but I’m sure with his Irish blood,  his head will grow into them : )  

1st attempt at keeping them on his little ears- wig tape. Would've been more effective if he didn't nap so often and have to have it replaced. Not very cost effective, nor gentle on his skin.

1st attempt at keeping them on his little ears- wig tape. Would’ve been more effective if he didn’t nap so often and have to have it replaced. Not very cost effective, nor gentle on his skin. 

One or the two boxes of parts and pieces for the CIs.

One or the two boxes of parts and pieces for the CIs.

 

Handy dandy (and durable!) carrying case.

Handy dandy (and durable!) carrying case.

 

 

 

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One Response to #17 (ACTIVATION!)

  1. Grammy says:

    Great job Katie!! Just so inspiring for so many people! Finn and Kay are so lucky to have you and Dan as their parents!!!

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