CI News

We received word a few days ago that the company that manufactures Natalie's implant issued a voluntary recall on the internal implant.  The failure rate has been less than 1% since 2009 and so they issued a statement saying they noticed an increase in numbers of failure rate.

After talking with our audiologists, we just have to sit tight. Natalie may or may not be affected by this. There have been 75 reported cases and 2 of which, were at our audiologist office. We are not sure if it is a bad batch problem as they are still investigating the cause which could take months. The way we would notice, is Natalie's processor would not work correctly and after troubleshooting, nothing will work on it. It is not something painful or bothersome, it just stops working.

Since they were seeing an increase in failure rates, they decided to pull off the shelves in hospital any remaining internal implants until they can further find the cause of the increased failures. If Natalie were to have a bad implant, she would have to have surgery again and be re-implanted of the previous generation internal implant, while the external processor is still compatible. (hopefully she will not be affected by this recall and hopefully the failure rate is still around 1%.)

There are 3 companies that make CI's, and prior to this recall, they had the least amount of failure rates (and probably still do) and never had any major issues with recalls. I am still glad we went with them and am hoping they resolve and find this problem quickly. I am on a few online forums and have a good support group of moms so we definitely are watching out for each other.

Lets hope this princess doesn't have to have surgery again!
 (e-mail below...)

Cochlear Limited is undertaking a voluntary recall of the unimplanted Cochlear Nucleus CI500 cochlear implant range.

While less than 1% of CI512 implants have failed since launch in 2009 , Cochlear has identified a recent increase in the number of Nucleus CI512 implant failures.   In an abundance of caution and with our recipients in mind, Cochlear has issued a voluntary recall of the Nucleus CI500 range of cochlear implants while it further investigates the issue.

No implants outside the Cochlear Nucleus CI500 range are affected by this voluntary recall including Nucleus Freedom implants which remain available.

The Nucleus 5 external devices (Nucleus CP810 Sound Processor) and any previous generation sound processors are not affected by this recall.

It is important to note that all existing Nucleus CI512 implant recipients can continue to use their system as normal. 

If a Nucleus CI512 failure occurs, the implant safely shuts down.  In the event of a failure, recipients can be re-implanted with the Nucleus Freedom implant range which remains available.  Nucleus Freedom is fully compatible with the Nucleus 5 Sound Processor System which is not affected by this recall. 

For people considering a cochlear implant, Cochlear recommends the use of the Nucleus Freedom range of Cochlear implants which are fully compatible with the Nucleus 5 sound processor system.  This combination of Nucleus Freedom and Nucleus 5 sound processor system does not sacrifice any of the performance benefits of the Nucleus 5 processor system. 

For more than 25 years, cochlear implant reliability has been of paramount importance to Cochlear, and we remain committed to providing high quality, high reliable cochlear implant systems. 

7 Months Hearing

Natalie has become quite the bookworm. I love watching her read and babble along, so much fun. She really is doing amazing. I just love seeing her progress and this whole world of sound and speech take over. I finally captured some more video of her to mark a lot of her accomplishments in just a short amount of time.

This last audiology visit and really changing up the mapping on her programs has made a huge difference. I feel like we are really accelerating now. Check out her video:

Has it really been a month?

It has been a month since I last updated this blog. Lots to write about.

First off... we survived our long and lengthy plane ride and trip. Going through security was no problem at the airport. I decided to just hand over her processors, back-ups and remote control and not have them go through the metal detector or the x-ray machine. It was no problem. I had her metal card on hand but she didn't even beep going through the detector. Coming back, they did a pat down on her instead and was no problem. She did alright for the flight...what you can expect for a toddler I suppose.

Natalie was obsessed with the horses across the street from Grammy's house. She definitely recognized when we said "lets go see the horsies" and she would immediately start doing the "clicking" sound we have taught her during therapy. We do a lot of animal sounds in her AVT, so it is fun for her to see the live version.

going to feed the ducks

Some cute ones of Natalie in Utah and Idaho

another animal sound "woof-woof"

 Some things Natalie is doing to keep busy these days:

loves the puzzle pieces

playing outside

I  catch her reading books all the time..
I hear her babbling as she is reading and looking over them.
I love it!

and a little light saber action with big brother... always fun.

Another fun thing in Utah for Nat was going on the boat: "puh, puh, puh" as she says it. The sound for the boat.

Her last audiology visit, we still aren't getting the best reliable audiograms. It is very difficult to assess good hearing at this age. She is so busy, pre-occupied, and after driving 2 1/2 hours in a car, does not like to sit still in a sound booth. We do the best we can with toys and snacks to distract her. Our audiologist wanted to get a little more aggressive this past visit, so she changed up her mapping some. I feel like the first few days, Natalie was pulling off her processors a lot, and it probably sounded a little different and louder for her than she is used to. She seems to be settling in ok now. 

At church on Sunday, when we were leaving, she turned to someone and waved and said, "bye-bye." Also, the other day I said "sh", without any gestures.. on her own she brought her finger to her mouth and nose to mimick "sh". 

I think she is babbling more, adding to her already existing vocabulary of "mama", "dada", "uh-oh" is:

"more"

"bye-bye"

And the animal sounds she can say; most of the time are:

"baa"

"moo"

"ooh-ooh, aah ahh" (monkey)

She is also really starting to understand more common phrases around the house.

"lets go bye bye"

"go get your shoes"

"lets go eat, or get a snack"

"lets go up, up, up"

"lets go down the stairs"

"where is your... sippy?, blankie?, paci?"

"where is the book, do you want to read a book?"

latest audiogram 8/18/2011

First Airplane Trip

We are headed on our first airplane trip with Natalie cross-country to visit family. I am hoping going through security will be non-stressful and hopefully we won't have any problems with the processors and back-ups. I have packed all our gear, and it will all be coming carry-on as we don't want our luggage lost. 

So, now just to entertain this little lady (and the other 2 kids) on 2 different flights going through 2 different time zones. More updates to come later...

Trip down memory lane...

So, for those of you that read this blog and didn't know Natalie pre-cochlear implants, we were in the same boat as many of you.

Just a rundown of a few things:

1. Natalie did not pass her newborn hearing test, 6 weeks later she was retested with a sleeping (non-sedative) ABR test. That is when we found out her hearing loss was severe/profound.

2. The following week, we met with a group called New Beginnings that gave us all the information we needed to proceed with Natalie's hearing loss. We had an early intervention teacher assigned to us for weekly 1 hour appointments that started when Natalie was around 2 months old. Thankfully she just comes to our house for this, which made it so much easier than driving to those appointments.

3. By 3 months, Natalie had a sedated MRI, saw 2 different ENT's, genetic testing, saw an optholmologist, EKG done (just ruling out anything else) had a 2nd ABR test done, and was fitted for hearing aids. That is a lot of appointments, lots of running around, lots to process in 6 short weeks.

4. 3-9 months was filled with: about monthly audiology visits, new ear mold impressions made, booth testing, and everything preparatory to getting her cochlear implants in January. The only thing that was a little hiccup along the way, was the need for ear tubes due to fluid in the ear (which would prevent her from getting her CI surgery) so those were done 4 weeks before her surgery.

Natalie wore this cap off and on to help keep her hearing aids on.

her little hearing aids...

Natalie around 5 1/2 months with Jenni her AVT teacher

This was around 7-8 months, so just a few months shy of hearing.

and now a walking, talking toddler... "the rest is still unwritten"

The 4th of July

I almost get a little teary eyed thinking about what a difference cochlear implants have made in our life.

We went to a 4th of July parade and of course we ALL (including Natalie) heard the loud sirens from the fire engines, police cars, etc. A year ago that wasn't even possible. I was reminiscing about that while the trucks were driving past us and the siren was so loud, I wanted to cover my ears and thinking how loud they were. And to think a year ago, that loud of a siren and still Natalie could not hear it. Amazing.

Let Freedom Ring

me and Nat at the parade

Of course I am thankful for Graeme Clark who helped develop the cochlear implant and for making hearing possible for thousands and thousands of people. 

5 months Hearing

Natalie continues to incorporate more sounds into her language. She is doing several new cute things besides being cute of course...

1. If I say "cheers", (normally at kitchen table) - she will grab her sippy cup and raise it up for me to hit with my glass.

2. If we say "stretch", she 75% of the time will reach both of her arms into the air. 

3. We have been working on some music and songs lately. She is trying to figure out the whole dance thing, but is more interested in watching what the rest of us do. There is a few songs, where she has been able to pick out the actions we have been learing (from the song rock-a-bye bear - The Wiggles). If she hears it or I sing it to her, she has been able to put at least one of the appropriate actions at the right time.

4. And, something new today I wanted to try out. Natalie loves books and we try to read a lot to her. I know there are a few that are ones she loves or has heard many times, so I put a few books out in her room today and just recited the words to a few of them, and she was able to correctly identify the book by what I was saying and pick it up and bring it to me without any help. (you will be thrilled Jenni!) A couple of the ones she grabbed were: Barnyard Dance and Brown Bear, Brown Bear (which seems to be one she really really loves.)

We went up for another audiology visit late June. Our AV therapist thought she maybe wasn't responding as well to the higher frequency LING sounds "sh" and "s" like we had noted previously, so based on her audiogram, her mapping changed a little and I think she is hearing better with those higher frequency sounds. We will follow up again in August and meet with our ENT for a 6 month post-op check as well. 

She can produce the following consonants (h,p,d,n,b,m,w) and vowels (uh, ah, a, ai, ee, oh). In fact today, she was saying "oh"quite a bit in long drawn out sounds. I am hearing that coming through more and more.

Our AV therapist is off in July and we are on vacation part of August, so I am hoping that we can continue to make good progress despite not having our weekly sessions. She gave me lots of things to work on too. Wish we had an ipad for therapy at times. Our AV therapist Jenni introduced it in one of our appointments and it would be so nice for helping her learn and comprehend things better. You could pretty much have any photo or visual in iphoto on the ipad and go through pictures and identify things easily. 

Here is the latest audiogram... she was up to the 20-25 decibel level on the 1000 frequency. I love seeing those numbers.