Author Archives: Mark Isham

Recent Booth Testing Result and a Great CI Animation

Mark here today. It’s been a while since I’ve posted – partly I’ve been pretty busy at work, but mostly because Eliza has just been nailing it on the blog lately. I really couldn’t be happier with our decision for Eliza to stay home with Fiona to focus 100% on therapy, it’s really been paying off dividends!

In fact just last week Fiona had her latest booth testing and she heard ALL 6 Ling sounds in the 20-30 dB range! Ling sounds are the basic building blocks of speech, including OOOO, MMMM, EEE, AHHH, SHHH and SSSS. This is an incredible result and at a DB level that is well inside the speech banana of normal hearing.

Speech Banana

Speech Banana

Hard to believe how far Fiona has come in just 5 months! While it’s certainly a team effort, Eliza’s relentless focus on therapy day in and out is paying off handsome dividends! What a great mom!

Anyway, love-fest aside, I found this great “step by step” overview of how Cochlear Implants work today. It’s a complicated device, so I’m always looking for easier ways to explain how they work. This is one of the clearest explanations i’ve seen so far (and has fun flashing animations!)

Check it out if you get a moment:
http://www.pbs.org/wnet/soundandfury/cochlear/cochlear_flash.html

Anyway, short update today. Hope everyone is doing great and enjoying their summer!

Activation Day! (Round 2)

Today was Fiona’s activation day for her second (left) ear. While the day had only a fraction of the fanfare of her original activation day, it’s still an important milestone as she now begins her life with full stereoscopic sound.

Eliza had a great post on this a few weeks ago with Two Ears are Better then One, but the net of all this is the benefits are far greater then just redundancy of hearing. Two functional ears are critical for localization of sound, something we take for granted in our day to day life. In addition, the overall quality of the sound is greatly improved by having both ears working in concert.

The procedure ran very similar to the original activation day, with the first hour spent mapping the new processor frequencies, and then the second hour testing her reception of sound. The procedure was complicated somewhat further by the fact that we had to turn on and off her existing processor to make sure she was picking up sound properly from the new ear.

As you can see here, the new setup has more wires to tangle up, which is something we’ll need to get acclimated to.

Two processors

Two processors

Umm, toy pie!

Umm, toy pie!

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We’ve also switched to the Advanced Bionics Naida processor on both ears, which you can see clipped to the back of her shirt in the above picture. These processors are actually designed to be worn over the ear (hence the ear-like shape), but Fiona is too young to wear them in that configuration right now. Instead, clipping to the shirt is far more manageable until she’s old enough to manage the processors on the ear herself.

We also have lots of new Advanced Bionics gear to go with these processors, as you can see decked out below.

Fiona1 (3)

We’re facing a new challenge with the amount of exposed wiring, and Fiona loves to tug the ear pieces off her head. Eliza is on the case, though, already designing elaborate headbands and shirt tucking contraptions. I think she may have a career ahead of her in CI clothing!

Anyway, we did shoot some video today. At the start we didn’t get much of a response, but towards the end we were starting to see some glimmers. This is not unlike her first ear, though, where we saw the biggest improvements in the weeks following her activation.

This video starts near the end of the activation process when we started seeing some glimmers. What’s really interesting, though, is when her right (original) processor is turned back on around the 3:33 mark – Fiona has a clear reaction and almost instantly starts humming. She’s normally a very vocal girl, but was dead quiet during most of the left ear activation. When the right was turned back on, it was almost like flipping a hearing switch. Pretty telling, and surely a sign to come for her left ear down the road.

And finally, here are some more pics that have nothing to do with the activation, but are just so darn cute because it’s my daughter, enjoy 🙂

Learning to program

Learning to code just like Dad…

The most flexible you'll ever be Fiona, enjoy it now!

The most flexible you’ll ever be Fiona, enjoy it now!

 

 

 

Back Home

Fiona is now back home and starting her journey to healing. She’s already back to her spunky self just one day later. Next up will be activation of her second ear on Thursday, June 19th. Everything is moving so rapidly right now!

Mom and Dad are bushed from a long night at the hospital, but doing fine.

Here’s the obligatory “Radio Flyer…Part 2” video from our second visit. I see a tradition starting!

Recovery

Fiona is resting comfortably with mom now. Everything went great with the procedure and things are sailing along more smoothly this time then last.

Here are a few pictures from the day. As you can probably tell there’s a bit of a monkey theme going today…

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Round 2 Tomorrow!

We’re all set for surgery #2, early tomorrow morning! It’s hard to believe it’s already been 3 months since Fiona’s first surgery back on March 7th, she has come so far since then.

This time around the doctor will be implanting her left ear in an identical process to the prior surgery. While he’s in the area, he’ll also be checking out the right ear to make sure everything is still healthy.

While we’re a little wiser and more experienced going into this second surgery, the fear always remains whenever your child goes under the knife.

If all goes well we’ll be spending the night in the hospital tomorrow night, then back home by early Saturday. If history is any guide, Fiona will be running around like nothing happened by Saturday afternoon. We’ll see if she’s up for any repeat radio flyer rides this time around.

Send good luck thoughts our way!

Fiona Glamor Spread

Fiona Glamor Spread

 

 

 

Second Surgery: June 6!

THX

Hot off the presses, we just received insurance approval for Fiona’s second surgery!

Just 2 short weeks away on June 6th, we go through this whole process again, but now implanting her left ear instead.

The results on her right ear have been nothing short of amazing. We can’t wait for Fiona to experience full stereo goodness.

WOOHOO!

 

Happy Birthday Fiona!

Today, May 1st 2014, Fiona Kate Isham turns 1 year old.

What a journey the last year has been…

…dreamy flashback music…

Fiona was born 8 pounds, 9 ounces at Northside Hospital in Atlanta on May 1st, 2013:

Fiona "Day 1"

Fiona “Day 1”

with Grandma

with Grandma

On her second day, May 2nd, she failed her infant hearing test. At the time, we were not overly concerned as that is quite common for newborns.

Day 2

Day 2

We were fortunate in that the delivery was uneventful. We have many friends where that was not the case in the last year, and our hearts are saddened greatly by the trials they’ve been through. Despite all our advanced in medical science, delivery is still a complex and risky endeavor. You know who you are, and our thoughts remain with you.

On Friday, May 3rd we arrived at home and learned how to become new parents.

Fiona at home

Fiona at home

Life settled into normalcy, but the failed hearing test always nagged at us. One month later, our fears were confirmed: Fiona was pronounced profoundly deaf in both ears. We were devastated.

Mother's Day 2013

Mother’s Day 2013

We were consumed with guilt, and had no clue where to go from there. After a few days of “why me”, we decided it was time to get on with it.

On June 9th, we started this blog – it’s still painful to read those first words.

We dove in head first, and learned everything we could. We learned about baby sign language, we learned about speech therapy, and eventually we learned about Cochlear Implants. We had never heard of Cochlear Implants before – neither of us have deaf relatives or grew up with deaf friends. Words can not describe the joy this brought us!

Cochlear Implant Illustrated

Cochlear Implant Illustrated

We soon met our great audiologists Lauren and Jenny at Children’s Health Care of Atlanta (CHOA) and Fiona’s new life course began.

Auditory Brainstem Response Test

Auditory Brainstem Response Test

I still remember learning about the “speech banana” and frequently revisit the old video about Fred Flintstone – a much watch if you’ve never seen it.

Frequency Spectrum of Familiar Sounds

Frequency Spectrum of Familiar Sounds

We also met our new friends Lauren and Aneesha at Auditory Verbal Center of Atlanta, and began our lifelong training of auditory verbal therapy. Eliza’s singing voice has come quite far in the interceding months, with”Moooo” becoming her new catch-phrase…

 

Sound Association

Sound Association

It’s hard to believe, but at just 11 weeks old, Fiona received her first hearing aids in July of 2013. It’s crazy to watch the old video to see how young she looked.

For the next several months, life resumed some normalcy and we learned to live with her hearing aids. The hearing aids were frustrating to say the least – they were not effective at allowing her to hear, and she loved to pull them off at every opportunity. Still, it was a necessary step in the medical journey.

Fiona at 4 months

Fiona at 4 months – Wearing Food is Fun!

As the winter came, we began to look forward to Fiona’s upcoming Cochlear Implant surgery. It was clear the hearing aids were not working, and it was time for the next stage. And the sooner the better.

Christmas 2013

Christmas 2013

Finally on March 7, 2014 her surgery date was here. We were both excited and a nervous. While implant surgeries are more or less routine now, there’s still plenty of risk.

Surgery Day

Surgery Day

The support we received on that day was incredible, still absolutely touching to us.

2 weeks later, the big day came. Activation Day!

March 20, 2014 was Fiona’s “hearing birthday”. Her first exposure to real sound. You can already see responses in her first video, the it’s gotten SO MUCH BETTER in the intervening weeks.

6 weeks later, and her responses to sound have gotten better and better. She clearly responds to her name, and loves to sing to herself. Mom continues to “moo” with Fiona all day long, it’s hilarious.

So here we are on May 1st, it’s only been 1 year and things have come SO FAR.

On June 6th, Fiona gets her left ear implanted, and we repeat the journey all over again.

I know we say this a lot, but we’re still in awe of all the support everyone has given on this blog and out there in the “world”. We are so thankful for our thoughtful friends and family – this celebration belongs to you as much as us.

Happy Birthday Fiona!

Fiona at 1 Year

Fiona at 1 Year

 

Genetic Therapy for Deafness?

My Google Alerts have been lighting up the last two days with all the news around a new research study released by Professor Gary Housley of Univeristy of New South Wales Australia, who’s team has successfully regenerated cells in the cochlea of a guinea pig using a combination of electrical stimulation from a cochlear implant and injected DNA cells.

Here’s one of the better articles from Wired: Genetic Tricks Could Make Bionic Ears Hear Better.

(From Wired): Cochlear nerve neurons (green) before (bottom) and after (top) gene therapy in the same animal. UNSW Australia Translational Neuroscience Facility, J. Pinyon and G. Housle

(From Wired): Cochlear nerve neurons (green) before (bottom) and after (top) gene therapy in the same animal. UNSW Australia Translational Neuroscience Facility, J. Pinyon and G. Housle

The articles are laden with medical technical jargon that I don’t pretend to understand. This one may be the worst, I just had to include it for laughs:

In the study, Professor Housley and colleagues used the cochlear implant electrode array for novel “close-field” electroporation to transduce mesenchymal cells lining the cochlear perilymphatic canals with a naked complementary DNA gene construct driving expression of brain-derived neurotrophic factor and a green fluorescent protein reporter. The focusing of electric fields by particular cochlear implant electrode configurations led to surprisingly efficient gene delivery to adjacent mesenchymal cells.

Woah.

Regardless of the jargon, its easy to jump on the hope bandwagon here. Cochlear implants, while a miraculous invention, are still very clunky devices. They are still quite limited in their abilities to reproduce pitch at levels equivalent to a functional ear, and much too bulky. For our techie friends, its like we’re living in the age of Apple II computers when we want an iphone instead.

I blogged about this quite some time ago that the “true” fix needs to be at the biological level – actual regeneration of the damaged cells. While I’m sure the actual realization of this dream is still far out, its awesome that research is proceeding so quickly in this direction. I’m 100% optimistic a solution will be available for Fiona in her lifetime.

Some other night time reading to help put you to bed…