Author Archives: Mark Isham

Three Weeks Later

Hard to believe it’s been over 3 weeks since Fiona was activated. I joke that I’m her biggest skeptic –  not because I don’t want her to hear, but rather that I absolutely, positively 100% want to be convinced it’s working.

Three weeks later and I can definitively say she’s responding, and responding well. Eliza posted some great videos last week, and this has become our new normal day to day. Fiona is loudly vocalizing (very loudly) and clearly experimenting in her new world. Earlier this morning she was echoing her voice into a plastic cup. I wish I was able to get it on video.

Since her activation, Fiona has been back to our audiologists twice, receiving 3 new programs each time. She’s now on “program 7”, and the rate of change has settled down into fine tuning. Last Thursday she was booth tested again, and was able to hear sounds at 40 DB, which clearly lies in the “speech banana” (see my earlier post).

What’s best of all is we feel she never had a chance to fall behind. When this whole adventure began, I told Eliza what would make me saddest is seeing her start to fall behind other children her age. Not able to talk and follow along at the same pace.

While I still need to be realistic in my expectations, I’m less worried about this adjustment now. I mean for real, she’s still not even 1 year old yet!

So now we settle into our new day to day. Eliza has been a rock star applying therapy around the house. I work from home upstairs in the house, and i’m constantly hearing songs and “i hear that” refrains coming from down the hall. What a great mom.

So what’s next? Well semi-big news there: we tentatively have a surgery date for her left ear: June 6, 2014. I say tentative because this is dependent on her recovery from her first surgery, but so far her recovery has been excellent. Nevertheless, we’re penciled into the schedule.

While the activation of her second ear won’t be as dramatic as her first, it will help her in localization as well as overall processing of sound in general. It will also represent our shift from using the “clip behind the shirt” Neptune processor I blogged about earlier, to the “over the ear” Naida. I’m sure that will come with its own set of new challenges.

Anyway, while things are starting to settle into a routine now, we’ll continue to update the blog with news and updates as they occur. Stay tuned…

 

 

 

A Tour of the Neptune Sound Processor

So now that we have a little more experience with Fiona’s new implant, I wanted to do a quick tour on how it all works.

Fiona is currently wearing the Advanced Bionics Neptune sound processor. It’s quite compact as you can see here:

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While the Neptune is first and foremost designed to be waterproof (bath time approved), the chief advantage at her age is the ease in which it can attach to her clothing:
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The sound processor is “a miniature computer that converts sound picked up by the microphone into electrical signals that are used by (the) cochlear implant to enable hearing.” (straight from the manual).

You can mix and match various color covers to personalize the appearance.

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The Neptune runs off a standard rechargeable AAA battery, although you’ll see further down this post that the “over the ear” processors use custom, smaller batteries.

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Attached to the sound processor is the headpiece. Embedded inside the headpiece is a very small microphone, look for the tiny black dot in this picture:

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The headpiece is also customizable with different cover colors as well. Fiona is sporting pink.

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On the back side of the headpiece is a magnet. You can add and remove additional magnets to adjust the strength. We’ve also further McGuyvered Fiona’s by adding some toupee tape to help keep her from pulling it off. (No, not from my private stash…)

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The head piece attaches to the processor on one side (connector plug) and the cochlear implant on the other, via a small magnet that was embedded inside Fiona’s head at her surgery. We have both standard headpieces and thicker waterproof variants. If she pulls off the headpiece, the processor starts beeping. Useful and maddening at the same time.

Here’s how it works: the sound picked up by the microphone in the headpiece transmits down the wire to the processor, is converted into an electrical signal, then transmitted back up the wire, across the gap from the magnets, into the implant and down into the auditory nerve inside the cochlea.

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In a very real sense, its reproducing what the functioning cells inside the cochlea of a hearing child would otherwise do:

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The Neptune processor has 3 different “programs” that are programmed by our (fantastic) audiologists to stimulate different frequencies at different levels. Fiona has already gone back once for her first reprogramming, and has several more to come. She’s currently on her 4th program. Think of this like easing yourself into the hearing world: you start with an empty room, then a quiet library, soon a restaurant and then someday a Rush concert. Neil Peart!!!

To switch programs, we attach a special device called the “Neptune Connect” to the processor to switch the mode, then detach again to keep the profile of the device small. Fortunately we don’t have to do this very often – maybe once every few days.

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For her implant surgery, Advanced Bionics provided us with 2 processors: a primary and a spare.

We chose to start with the Neptune as it’s easier to manage with a small child, but our second processor is the “over the ear” Naida processor. The over ear processors are even smaller then the Neptune and are easier for older children and adults to manage, but are more challenging for certain infants who like to constantly constantly constantly pull things off their ears…

Still we have her Naida on deck, still in the packaging:

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Yes that’s a remote control you see as well. We’ll get to live the parents dream and directly control how loud our child plays her music, mwuhahahaha!

Actually its kindof cool as these implants can connect straight into bluetooth and other wireless techs, i’m a little jealous. Maybe i should start getting some Advanced Bionics kickbacks from this free PR…

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And of course last but not least, we’re the first kids on the block with a stuffed monkey with its own Cochlear Implant:

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So Mom and Dad are learning besides Fiona, but she’s already acclimating quite well to the change. Kids are so resilient!

(Insert your own caption here)

(Umm, insert your own caption here…)

And More Videos…

Some more videos to share today.

First one up starts with some phone footage taken by Eliza this morning of Fiona responding (cheerfully) to sound – turning around and crawling back at her. She’s had lots of great moments like this in the last day.

Later in the same video is some footage I took this morning at Fiona’s first auditory verbal therapy session since activation, and yes I was able to work in a “more cowbell” joke. (Thanks Lauren for putting up with me and the camera )

Direct link.

Therapy will now resume a weekly schedule, with the first priority working on Fiona’s detection of sound. As the weekly mapping process continues on her implant, she will improve at sound detection and eventually move to the next phase: discrimination (moo cow vs. nay horsey, etc.).

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This will be a slow process, don’t expect her to be talking for another year or so. (of course she wouldn’t be talking now even if she COULD hear ;->).

Next up, by popular demand here is the full uncut video from yesterday’s activation session. Well there is one very small cut for “you know who” about “you know what”, wink wink, but its very small and you’ll hardly notice.

This is only for the hard core, it’s 26 minutes in all its glory. Our feelings won’t be hurt if you skip it. Of course you may miss my series of fiendishly clever tips to the location of the buried treasure, but hey that’s your loss…

Direct link.

P.S. Thanks to Bruce Underwood (aka “Grandpa”) for his role as official camera man.

Activation Day!

Exciting Day!

First things first, here’s the video. Go ahead and watch it now!

Direct link here.

The original content was ~20 minutes with a lot of down time of me making stupid jokes about hot dogs and zombie babies. I spared you the agony and distilled down to 5 minutes of highlights. If there’s interest in the full video I can post later – and of course who can resist a director’s cut with more Mark.?.?

Okay, on to the reactions. I’ll let you make you form your own opinions. On my side, I’d characterize them mostly in the “subdued” camp. No laughing, but no crying either. What did you think?

As our audiologist Lauren explains in the video, today should be considered Fiona’s “sound birthday”. This is all very new to her and it will take time for her to recognize what she’s hearing. Remember, she’s only 10 1/2 months old!

Still, in some of the shots you can see a very clear reaction which is pretty exciting. If you’re curious, look back to the video of her first hearing aids to compare reactions. It’s a weird time warp in such a short amount of time (just 9 months!).

Now, on to how the day went. The first hour was spent “mapping” her new implant. Basically they hook a laptop up to her processor and program different “levels” of stimulation that we can utilize as her development needs proceed.

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Cyborg Baby!

The programs are not as simple as a volume control, but instead are tailored to specific amplification of specific frequencies in a manner best suited to the individual’s needs. Fiona’s implant has 3 program levels that we’ll be switching through as her tolerance to sound increases. We also will have weekly “mapping” appointments with the audiologist for the next several weeks to continue modifying and increasing those levels.

During that time we kept Fiona distracted by feeding her breakfast – and who wouldn’t be distracted by a piece of yummy white bread!

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After the mapping was complete, the full family was invited in to watch her first reactions to sound. The support was incredible and touching, especially since everyone took a half day off from work to come out! Rosemary, Justin, Stephanie, Shyler, Bruce and Penny – you guys rock!

The Paparazzi!

The Paparazzi!

We tested Fiona’s implant for about 30 minutes, then packed up all our “loot” to bring home. Lots of toys to play with, Fiona says they all taste delicious. I’ll post more on those later.

New Toys!

New Toys!

Now we’re back and learning to work with Fiona with her new sense of hearing. We have our work cut out for us, but it doesn’t get more rewarding than this!

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Tomorrow we return to our Auditory Verbal therapist for our first post-implant session. We’re looking forward to diving in.

It’s amazing such opportunities are available to children at such a young age. The adventure continues, stay tuned…

Big Day Tomorrow

The bandage is off and Fiona is ready for her big activation day tomorrow. While she still has a scar over her right ear (and will for some time), everything has healed quite nicely in the last 2 weeks.

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We meet the audiologist at 9am tomorrow to begin programming her implant, with the “activation” (first introduction of sound) to occur an hour or two later. Eliza’s family is skipping out on work tomorrow morning to come show their support, and of course help with the video recording. Did I mention they were awesome?

So we’re all very curious what her first reaction will be…i’ll post the video as soon as I can tomorrow.

Which brings me to the poll results!

While frightful crying (my vote) put up a valiant effort, cheerful laughing was clearly the crowd favorite with 65% of the vote. You guys are a bunch of hopeless saps!

Still, I hope I’m wrong (and you all are right) and we have the next big youtube sensation on our hands! 😉

Here are the full results.

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More tomorrow, stay tuned!

How will Fiona respond?

With only 4 short days remaining until activation, we’re really curious how Fiona will respond to her first sound. We have our own predictions, but we thought it’d be fun to hear yours.

What do YOU think?

 

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I’ll publish the final results Wednesday night.

1 Week to Activation!

Fiona’s recovery continues to go well. Really well. In fact, the first day back from the hospital she was already crawling around the house like nothing happened.

Her spirits remain high and she’s in a super-cute inquisitive stage of late. She’s also crawling EVERYWHERE. Here’s a picture from just a few minutes ago.

This is MY kitchen!

This is MY kitchen!

Activation is still on track for next Thursday. Oh boy are we looking forward to it.

To get everyone in the mood, here’s a short activation video from “Ava” from last year. Not sure how old Ava is, but he looks pretty young!

Direct link.

7 days to go!

Back Home

After a relatively uneventful night in the hospital, we were discharged around lunch time today. Fiona will need to wear her gauze bandaging for about a week, and has a full regiment of antibiotics and pain relievers on her plate for the next several days.

Still, it’s good to be home and have life return to a semblance of normalcy. Fiona’s spirits were high today, and her appetite and energy are back to normal.

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She’s quickly discovering the fun “take off my bandage” game, so we’re bracing for battle over the next few days. Otherwise, this week should be relatively quiet while we gear up for activation on March 20th. I’ll keep you posted if anything interesting comes up.

In parting, here’s a short video of me playing around with the radio flyer at the hospital this morning. Oh yea, Fiona was along for the ride too.

Free radio flyers! What an age we live in…

Direct link.

What a Day

Last post of the day, and what an eventful day. Fiona is sleeping away in recovery so we have some time now to reflect.

The events started bright and early at 7am. Grandma and Grandpa Underwood were waiting for us in the parking lot and joined us in reception.

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Aunt Stephanie soon joined us in our pre-op room.

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And soon after FIona was laughing away with Aunt “RoRo”

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They took away Fiona around 9:45, and we were notified when the procedure started at 10:45. After a quick trip to the cafeteria for breakfast, we soon learned the operation was a complete success and Fiona was on her way to recovery.

Around 12:45 we met Fiona again in the recovery room. She was still under anesthesia at the time. Fiona had a thick gauze bandage over her right ear to protect the incision.

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Lots of napping ensued.

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As part of the festivities, Fiona got a cool new monkey toy…a monkey with a Cochlear Implant. Pretty cool!

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Around 4:30 or so, a now alert Fiona decided it’d be fun to rip out her IV. After a little blood and a mad dash by the nurses, we fixed her back up. Note the new “protective shielding” the nurses rigged up, courtesy of Huggies. Haha.

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Scottish Rite has these cool radio flyers the kids can play with. Dad was excited.

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We tried to see if Fiona wanted to play, but it was too soon. Maybe tomorrow.

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We spend the night in the hospital tonight, then back home tomorrow. After 2 weeks of healing, activation is the next steps.

So many thanks go out to all our great friends and family who have supported us. Especially those who took the day off from work today to join us. You guys rock!