Tag Archives: Cochlear implant

Still On Track for March 7th Surgery Date

Today we bundled up Fiona in her winter parka (courtesy of Aunt “RoRo”) to brave the 15 degree weather to visit her ENT (Ear Nose Throat) doctor. Today’s checkup was a routine step on her long journey towards her upcoming Cochlear Implant surgery on March 7th.

Georgia Peaches Don't DO Cold...

“Um, Georgia Peaches Don’t DO Cold…”

The nurse practitioner checked out Fiona’s ears for infection and fluid, but everything looked great. Right now infection is her biggest risk of postponing the surgery date, and babies under 1 year can be prone to frequent ear infection. Fortunately with Eliza being a stay at home mom, we are avoiding the most common source of infection: day care.

In the 2-3 weeks before the surgery Fiona will be entering our “baby in a bubble” phase, meaning we will need to limit her exposure to the elements, other people and most importantly other children. We are even considering using a mask to cover her mouth during hospital visits, but that may be extreme.

Fiona has a pre-op checkup in mid-February, then a CAT scan in late February to confirm her ear passages are still clear for the surgery. If all proceeds well on that front, we’ll be set for the March 7th surgery on her first ear.

We’re very excited and can’t wait to share the activation day with everyone.

Stay tuned…

 

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Merry Christmas from Fiona

How YOU Doin'?

How YOU Doin’?

2013 was a tough year for Team Isham. Fiona Kate was born on May 1st, just over 7 months ago. On May 2nd, she failed her newborn hearing screening. Two retests later, our fears were confirmed: Fiona was profoundly deaf. Eliza and I were devastated.

On June 9th I started this blog, now knowing much what to expect. Eliza and myself can sometimes be private people, but we just didn’t know how to cope. It was too much, and we needed to talk to people. The blog seemed the right balance to me – share info with those who wanted to follow, without depressing those who didn’t. I thought maybe 10 people would follow.

The response was, in one word, astounding.

Its almost become cliche to say “we have a great family”, “we have great friends”. Everyone does these days it seems, but in our case it really is true. The amount of support we’ve received has been mind boggling. We didn’t know what to expect, but I’ll tell you this wasn’t it. We expected a few cards and some polite “i’m sorry to hear that”, but that was it. How wrong we were – the continued involvement and response to this blog has been heartening and empowering.

Even today, over 6 months later, we continue to receive complements, support, and encouragement. And boy have we come a long way. If you get a moment, reread that first blog. Its a strange time warp for me. We have come so long in such a short amount of time.

It still sucks and we’ll probably never stop saying “what if”, but we’re in a much better place now. It’s not so bad, we got this.

2014 will be a much better year. Fiona’s first Cochlear Implant surgery is March 7th, just over 2 months away. Her activation will be a few weeks after that. This will be the first sound she will ever hear – ALL BEFORE HER FIRST BIRTHDAY!

Remarkable.

Eliza and I thank everyone for sharing this journey and being, well…awesome. It means more to us then you’ll ever know. Hopefully this blog has been uplifting and maybe you learn a thing or two along the way.

Fiona’s journey is far from done. Thanks for sticking it out…

Therapy by the Tree

Therapy by the Tree

Dr. William House, Creator of the Cochlear Implant

The Real "House"

The Real “House”

Great article found by the head of my research division (aka Eliza), it’s about Dr. William House, the creator of the Cochlear Implant:

Dr. William House, creator of cochlear implant, continues working at 88 to give gift of hearing

I love stories like this: entrepreneurs who “buck the trend” to bring something meaningful to the world. It’s interesting to hear some of the opposition he originally faced, like this quote:

The responses from fellow doctors, however, stung. They claimed he was money hungry, House said.

Working for technology startups the large majority of my career, i’ve been fortunate to work with some pretty creative and intelligent people working on creating something new the world has never seen. Still, never have I worked in medical research – this is an area that really makes a difference. I often wonder what my life would have been like if I went down that path instead.

The article mentions a memoir of Dr. House, The Struggles of a Medical Innovator: Cochlear Implants and Other Ear Surgeries: A Memoir by William F. House, D.D.S., M.D.

Might be a good book to add to my Christmas reading list. If anyone has already read this (or adds it to their own list), I’d love to hear your reactions.

Retinal Implant for Blindness

Short Friday post today. A few months ago I blogged about the future of heading correction, pointing out the similarities between hearing loss and vision loss. In that blog I had mentioned that hearing correction was in some ways ahead of vision correction, but its only a matter of time before vision catches up.

Well wouldn’t you know it today I came across new research on retinal implants, which look in many ways very similar to Cochlear Implants. Below is a good illustration that shows how it works.

retinal_implant

My family has a broad history of vision problems, so when Fiona was diagnosed with profound hearing loss it was a total shock. You never want any harm to come to your child, but if there was ever to be a problem I would have bet on vision problems instead.

While the retina implant still has a long way to go, its fantastic to see research is making progress on this front.

Booth Testing

Tonight the Isham clan braved 2 fantastic hours of rush hour traffic to take Fiona to her first booth testing session. Booth testing is one of the final stages in our journey to prepare Fiona for the Cochlear Implant procedure, and is typically not started until the baby is at least 6 months old. Today Fiona is 6 months and 2 weeks old.

The process is pretty interesting. First you have a soundproof room equipped with speakers and TV flat panels located at strategic locations. Here’s the booth from the outside:

Come on in!

Come on in!

Inside the booth there are speakers immediately to the left and right of the subject, and TV screens located in close proximity to the speakers.

Inside

Inside the booth

During the test, Eliza sat in the booth with Fiona on her lap, facing the front of the room with the speakers and TVs directly to her left and her right. Our audiologist Lauren sat directly in front of Eliza with various hand puppets to distract Fiona and keep her attention focused forward.

On the outside, Dad stood in the dark with Lauren’s assistant Jenny, looking in through the observation window as the test was underway. The goal of course is to keep hidden from Fiona so she does not get distracted by her dad’s incredibly handsome looks.

Somebody's Watching You...

Somebody’s Watching You…

Jenny then proceeded to introduce sounds at different locations in the room, looking for a repeatable response from Fiona. Similar in some ways to the ABR test, she would vary the frequency (high pitch to low pitch), volume (75 dB to 95 dB) and location (left or right). (Check out my earlier post on Frequencies of Familiar Sounds for more information on the sound spectrum).

What makes this fun for children are the TV screens. Whenever the child positively responds to the sound (by looking in the direction of the sound), a short flash of a movie displays on the TV nearest to the sound. In this case, it was good ‘ol Nemo.

Here was the display in the control room (to keep dad entertained during the interludes)

Everyone Loves Nemo

Everyone Loves Nemo

This process is called Visual Reinforcement Audiometry. Here’s a short (1 min 30 second) youtube video that shows this process really well.

To score a positive result, Fiona had to respond conclusively twice to the same frequency/volume/location. While she did have a couple “single responses” at high volume and middle frequencies, she did not have a repeatable result. This was as expected given her prior testing – we did not expect a miraculous change. Still, this level of validation is an important milestone to confirm her candidacy for the CI procedure.

Fiona will be booth tested again at least once or twice more before her surgery on March 7th, but this first test was definitely interesting to watch.

Baptisms, Seminars, and Gadgets Galore

Long day for miss Fiona today. We started off witnessing the baptism of Andrew Cassidy, the son of our good friends Samantha and Brandon (congrats guys!). Andrew was born just weeks before Fiona, so its fun to watch the two of them grow up together.

Fiona had a ball at church and thoroughly enjoyed chewing on the various handouts in our pew. (We kept her away from the bibles, i’m sure there’s a place in hell for those babies ;->).

Hey I know that guy!

Hey I know that guy!

Afterwards we stopped by Chez Cassidy to grab a great lunch and a few most excellent beers. Fiona got into the spirit of things, practicing with an empty cup….

I'm a big girl now!

I’m a big girl now!

Or was it???

From there we drove on to a seminar in Norcross hosted by Advanced Bionics, one of the “big 3” cochlear implant manufactures I’ve talked about in earlier posts. Eliza and I have all but decided to go forward with Advanced Bionics as the implant manufacturer for Fiona’s surgery on March 7th, so today was a fact finding mission to learn more about their latest processor, the Naida CI Q70 and what options we should select.

AB Seminar

AB Seminar…with Free Chocolate Bars!

And oh my the options! Different colors, different batteries, remote controls, cables and even Bluetooth! It felt like car shopping – should we get the rust coating?

Naida Processor

Naida Processors and Accessories

While we’ve seen the new model before, this was our first “hands on” experience. It was great to play around with the implants – feeling the weight, swapping out the batteries, and plugging in the various cables. It helped a lot in our decision making process.

The biggest value of these seminars, though, is talking with other parents who’ve been through before. It’s always uplifting and educational to hear their stories first hand.

Some tidbits I picked up:

  • Fiona is very lucky to get her surgery at 10 months old. In the past, insurance companies would not authorize until 2 years or even older. Without fail, every parent we’ve talked to has confirmed the earlier the better for her speech development. Kids who have received implants at a young age “mainstream” into classes with hearing children much quicker.
  • Several kids at the seminar had graduated from the Atlanta Auditory Verbal Center, the same center we use for Fiona. Nothing but positive mojo about the center and the results on the children. One adorable little girl said she graduated so young she barely remembered even going to therapy. (Her speech was excellent by the way). Remarkable.
  • Interesting tip on CI colors: one parent recommended we NOT get skin or hair color, but rather something bright and noticeable – at least for infants. Why? Because you will constantly lose the implant around the house, outside, etc. and its much harder to locate the skin colored implants. Interesting perspective – we’re still making up our mind on that one.
  • One parent highly recommended getting the product replacement plan with the implant. I almost never get those (can you say “profit center” ?), but he brought up a good point – you don’t want your child to live “in bubble wrap”. If you’re constantly stressing about losing or breaking the implant, you’re going to stunt your child’s exploration of the world. You want them to explore, roll in the dirt and be a kid. I couldn’t agree more.

Anyway, long day for miss Fiona today, but she did great. She just went down to bed, an hour late courtesy of daylight savings. Sleep well!

Now time to watch some Zombies on Walking Dead tonight. Brainnnnssss!

Don't wake the baby!

Don’t wake the baby!

New Algorithm Helps Cochlear Implants Detect Music

Upgrading your hearing in 3...2...1

Upgrading your hearing in 3…2…1

Back in August I posted about one of the major current drawbacks to Cochlear Implants: the inability to effectively pick up music (see Cochlear Implants and Music).

Tonight I read an interesting blog about a new algorithm devised by researchers at the University of Washington in Seattle that “vastly improves the sound quality of existing implants to the point where music sounds like something other than a random clamor”. You can see the full post here.

This is both an encouraging and scary statement. Scary in that music perception is still SO bad, but encouraging in that this problem can be attacked through software upgrades. Pretty crazy if you think about it. Imagine receiving an email asking you to “download the latest upgrade of your implant software to…hear guitar music!”

I have no doubt something like this will be exactly what happens in the future. With the CI implant surgery being so invasive, requiring infant anesthesia and an overnight hospital stay…TWICE (once for each ear), minimizing the need for future surgery is critical.

This emphasizes the value in getting a processor that has room for future software upgrades. While I’m sure Fiona will no doubt need a physical upgrade again later in her life, the advantages of upgrading must be very compelling to go through the surgery process again. Fortunately the processor companies also realize this and have placed the bulk of the processing hardware outside of the implant area itself, allowing for many upgrades without new surgery.

Still, it is inevitable internal upgrades will likely be needed again down the road as the nerve stimulation apparatus becomes more sophisticated. My hope is Fiona’s second round of implants will happen when we’ve finally achieved the “completely internal” implant.

Still a long way off, but I’m sure it will happen in her lifetime.