An Update. Finally!

Ok, some numbers for you :)

At one month post activation, David scored 76% correct on 10 recorded HINT sentences. At 6 months, he is up to 95%!!!!

At one month post activation, David scored 44% on his CNC single word list with auditory clues only. At 6 months, he is up to 86%!

We had a noise situation recently. My sister got married about a month ago, and the reception was L.O.U.D.

David has a program that helps him in noisy situations. I swear he did better than I did! He was able to talk to people and hear them with relative ease!

People have been telling me that he seems so much more relaxed now that he has the implant. He doesn't have a look of concentration on his face all the time, he's smiling more, talking more, hearing more things correctly. I rarely have to repeat myself now!

Now, for those of you reading...What kind of phone works well with the implant? Our cordless isn't working for his hearing aid OR his implant!

Simply Exhausting

I debated posting today, but this sight pushed me over the edge.

I went with David to speech last week. It was exhausting for him. He concentrates so hard and works very hard to make sure that he's forming the words correctly, and hearing them correctly. It's really shining a light on this whole process that I didn't fully understand. Never in a million years did I think that 45 minutes of therapy could make a 28 year old man so worn out. (Granted, he does work a very physical job for 8 hours before going...)

This past week I've been super impressed by David. He's worked harder than I've noticed before. Maybe something clicked, or maybe it was because I was finally understanding a little bit of what he's going through.

David has been self correcting this week. Normally, if he mispronounces a word, or letter, it is my job to repeat the word slowly and correctly, then have him mimic what I did. This past week David would say something, then correct HIMSELF repeating the word slowly and differently than he had before and looking to me to see if it was right. If it was he repeated it several more times so that he could feel, and hear the correct sound of the word. If it wasn't I would correct him and he would soak that in the same way.

It's lots of little things like the self correcting that I'm starting to notice on a day to day basis. I've also noticed that he's reading to Jaime a lot more these days. Taking time to make sure every word is read correctly. Jaime LOVES the attention, and is addicted to books. Reading bedtime stories has turned into a wonderful bonding and learning time for father and son to have together.

Once again I find myself bursting with pride at how well David is adjusting to his cochlear implant. Of course there are ups and downs, but at this point it has been far more ups, and it's making a huge impact on our family's daily life.

Free shipping (and life as usual)

Cochlear is offering free shipping this month for web orders. It's usually $9.95 for shipping and it's shipped FedEx 2 day.

I'm sorely tempted to buy David a Hatis system for his phone, but even on sale with free shipping it's pricey. It's worth it right?

So, Jaime corrected David yesterday when he mispronounced Ballerina. We all got a laugh out of that.

I honestly can say that I never appreciated how difficult the English language is until David started speech therapy.

Listen is pronounced liss-en, not LIS-TEN. I never realized that certain letters have the same mouth position, just different vocalizations. Why would you if you're hearing?

When you grow up as a hearing person, it's second nature. You learn to speak that way and you don't really have to work at it. It's much easier to learn when you're young. David is working very hard to learn it at 28.

Jen, if you read this, I'd like to congratulate you on your recent surgery, and David and I wish you all the luck in the world with your upcoming activation :)

(and news of improvement...)

Me, not David.

David continues to rock his implant. He's in speech therapy now, working with Rebecca once a week. He's making progress, though it's slow and frustrating at times.

Right now they're working on recognizing vowels sounds in closed sets of words, and working on l,r,w for consonants.

As far as how the implant has improved his hearing, here are the before and after audiograms!




The first one is pre-surgery from his CI evaluation. I left the info on the bottom so that you can get a gist of what it all means.

The second image is from ONE MONTH post activation. ONE MONTH. That is HUGE.

He went from 43% accuracy with his hearing aids on his HINT test with only auditory cues, to 76% correct with his implant. He scored 100% with auditory and visual cues in quiet conditions.

I can't wait until his next audiogram to see how things are changing.

We both continue to work hard, and it is paying off in a major way!

Loud

"The water running...LOUD. The water draining from the tub...LOUD. The pressure being released when you open a soda...LOUD."

It's amazing what you tune out or just get used to when you're a hearing person. David is experiencing all of these things now, and I just smile, sometimes I giggle.

I'm tickled by the progress David has made in a week. I spoke to him yesterday with a paper in front of my face so he couldn't lipread. He understood the majority of what I said.

He doesn't wear his hearing aid at home anymore. He's wearing his processor at work more often now too. (The funniest description is of what a crowd of people sound like. "Like a bunch of birds chirping at each other.")

What do I sound like to him? At the moment, Mickey Mouse. That's a start!

There are little things that we don't notice too much as hearing people. The sound of a kiss, a gasp, walking in the hallway, turning on a light, the wind rustling through the leaves.

I'm bursting with pride when I see how dedicated David is to making this work to it's highest potential for him.

Hear and Now

I watched this documentary on HBO last night. I thought it showed a very negative view on cochlear implants.

A 65 year old couple, deaf since birth had CI surgery. They had NEVER heard sound, and had a hard time adapting to what it was like to hear. They couldn't make sense of it. They couldn't repeat words that were spoken to them.

I thought it was sad. It was made years and years ago, but they didn't seem to have any rehabilitation therapy after being activated, and they didn't seem to understand that is *wasn't* going to make sense at first.

I'm SO glad that throughout the whole process we've had people telling us the truth. It won't sound the same, it won't make sense at first, don't expect miracles at activation, it is going to be a LOT of hard work.

We've had a fantastic team of doctors and audiologists throughout the process.

I can't wait to meet the speech therapist :)

May 21, 2008

Yesterday was amazing.

David is already improving by leaps and bounds with his implant. He's turning off his hearing aid and just listening.

He heard Eloise humming, shaking her water cup, shaking her rattling toy, saying babababababa. He heard Jaime singing and could tell that he was singing. He heard the different tones on the piano. He heard the water click on in the dishwasher.

He heard me gasp when he kissed my neck when we were hugging.

I can't wait for the speech therapy to begin. His progress is much better already than I expected it. They tell you not to get too excited for the intial activation, so we were guarded.

This technology is simply amazing.

What a gift for our family.

Hello Readers

It's been awhile. I chose not to blog the day to day musings of a recovering implant recipient.

We have been anxiously awaiting "Activation Day". That day was yesterday.

David's appointment was set for 1pm and we started a bit late due to horrendous traffic on I-95.

Martha and Maureen were both there. Maureen has been David's audiologist since he was an anklebiter (2). She came down for his activation, which meant a lot to us. It's hard switching audiologists after so long. Fortunately, Martha is also wonderful. She called to check up on David during his recovery. He's a person to them, not just another file.

Now, on to the exciting part.

The activation took a couple of hours. For the initial maps, they set the comfort and threshold levels on the implant, made sure that all 22 electrodes were functioning and set volume.

Right now his four programs are just different volume levels. As he gets used to how things sound, more advanced programs will be put in their places.

During the activation process, David was able to describe how the tones sounded (this is a very very good sign). He said one sounded like a gong, another like the alarm on a truck backing up. He also heard his own voice. He said that he sounded hoarse, and it was interesting watching him try to find the right words. In the past he's told me that he wasn't able to hear himself speak.

David was getting very tired during the activation process, but kept plugging along.

Once we got home, he was pretty overwhelmed by all of the sounds in the house, so he went outside to water the garden. He turned his hearing aid off. When I came out, he told me that he heard birds. Too many birds! I laughed and told him it was always like that. He asked me if the water hose always made that sound. He heard a neighbor's child yelling from another house on another street. He heard Jaime yelling from the play scape. He heard Eloise blowing raspberries from my arms (that one made him smile his amazingly charming smile).

He's not yet recognizing speech as speech, but that will come with time.

In two weeks we go back for another mapping session. Until then, David will be working out all the new sounds that he's hearing.

Stay tuned!

More pictures

Sick of them yet? Too bad.

4/28

5/1

5/2


It is amazing how quickly he's healed up. His hair is growing in now, and we're back to "normal" (in quotations because I have yet to figure out what normal really is...).

17 days until activation.

Knowledge is power.

Cochlear Americas offers FREE information about the Nucleus Freedom.

If you are thinking about getting an implant, get over to their website (www.coclearamericas.com) and order a FREE information package.

I'm sure Advanced Bionics has something similar.

If you are getting an implant and have someone in your family who is uninformed and resistant to the idea, show them the information. They might just change their way of thinking ;-)

In other news:
David's scar is healing very very nicely, and the hair is starting to grow back. I'll post pictures later, after I take pictures. He is back to work on Monday. I hope that it goes nice and smoothly for him.

I've mentioned before how lovely it's been to have him home. The kids (and I) will really miss him.

Stitches are out!!!

We were scheduled for an appointment this afternoon for David to get his stitches out. In the morning, the office called and asked if we could come in this morning instead. Apparently his surgery got bumped because equipment wasn't there on time (I'm SO glad that didn't happen to us) so he needed to shuffle his schedule around.

We hopped in the car and off we went.

Everyone in the office was all smiles when they saw David. The nurse that took us back thanked us for the flowers that we had sent to the office after surgery. They had worked their tails off to get his surgery approved and back on the books for Monday (that's another story that I'll tell at a later time).

Dr. Cameron came in and took a look at David and told him that it looked perfect and that he had taken very good care of it :) Then out came the stitches. We were thinking we were done, and getting ready to go when Dr. Cameron told us to hang on for a minute.

In he comes with a big box. It felt like Christmas. The box was David's external parts to the cochlear implant. Two processors, batteries, a carrying case, a big electric dry aid, re-chargers for the batteries, just lots of stuff. Fun stuff. Amazing technology.

The initial mapping session is going to take place on May 19th at 1:00.

*sigh*

Now, pictures.

Before:

After:


The VERY exciting big box:

Weezy likes it too!

FAQ's

Q: What is a cochlear implant?
A: A cochlear implant is a surgically implanted device that directly stimulates to cochlea to transmit sound messages to the brain. The internal device is made up of an electrode array that goes inside the cochlea, and a receiver/stimulator. The receiver/stimulator contains a magnet so that the external processor can be hooked up to it.
The external part of the cochlear implant is a microphone (attached to the processor) a processor (either body worn or behind the ear) and a magnet that attaches to the side of the head to transmit the messages to the stimulator and then on to the brain.

Q: What kind of implant does David have?
A: David has the Cochlear Nucleus Freedom. More information on this particular implant can be found at www.cochlearamericas.com

Q: Why did David only have one side done?
A: David still gets pretty good benefit from his hearing aid. When he was going through the testing for the implant, the specialists talked to us about only doing the right side, where David's hearing is worse.

Q: Will David be able to get the other side done?
A: After he goes through the mapping process and speech therapy, if David likes the implant and what it does for him, he can choose to have the other side implanted as well. This would not happen until he's had his current implant for at least a year.

Q: When will the device be activated
A: Sometime around a month - 6 weeks after the surgery, we will go in for the initial mapping session

Q: What is mapping?
A: Mapping is the programming of the processor. It will adjust volume, and have different programs for different environments. It will need to be adjusted several times in the first few months so that David will get the most benefit from the device.

Q: Does it come off?
A: The external part of the implant is worn just like a hearing aid (David is getting the behind the ear processor) It comes off just like a hearing aid too. At night, so he can sleep, and for showering, swimming, and any water activities.

Q: Does it use batteries?
A: With the Freedom, David will have the option of using two different kinds of batteries. Rechargeable lithium ion batteries, and disposable batteries. The lithium ion batteries are a more cost effective method :)


I hope this answered most of people's questions. If you have any other questions, please leave a comment and I'll answer anything you'd like to know!

Bandages are off!

The stitches look good. David is relieved to have the pressure off his head, those bandages were tight :)







Jaime is afraid to look at him now :( Poor thing. He'll have fun going back with Nana today.

The next step is getting that hair washed (later today) and getting the stitches out (Monday)

Getting to where we are.

David was just implanted with a Cochlear Nucleus Freedom implant on 4/21/08. It took years to get to this point. I'll start at the very beginning.

David was born a normal kid, just like any other kid. The 3rd child in a family of 4 children. He got very ill with spinal menengitis when he was 11 months old. He spent a month in the hospital recovering and came home right before his first birthday. Having this disease caused him to lose most of his hearing. By the time he was two years old, he was fitted bilaterally with hearing aids.

David went through life with his hearing aids, wearing an auditory trainer in school, and working in speech therapy and with a teacher of the deaf throughout his years in school.

Around 4 years ago, we (as a newly married couple) went to see a new audiologist about new hearing aids. She said that the newest technology at this point wouldn't be terribly beneficial to David and that there was one in between digital and amplification that would be the best option for him in hearing aids. She also mentioned that he should look into getting cochlear implants.

We started doing some research and thought that it looked really interesting and beneficial, but David wasn't ready to take that step yet (after all, it is a life altering surgery!)

We went back to his audiologist that he had been seeing his whole life. David mentioned the CI and she agreed, that he would be a good candidate. At that point, David still wanted to think about it more. He was fitted with his new hearing aids and off we went into the wonderful world of digital (semi anyway) hearing aids.

At first they were GREAT! Then, things started getting hard again and David started thinking more and more about the Implants. When we went to get him new ear molds, he brought it up. His audiologist gave him the name of an ENT in another state that did the implants.

We went and met with the Doctor, and started the testing process. This took a long 6 months. David is what they call a borderline candidate. He's just on the edge of being able to get implanted. The reason that he's on the edge is because he communicates well with his hearing aids even though it's terribly frustrating for him at times. The thing that pushed him over the edge into approval is his strong motivation and desire for change.

He recieved the implant on 4/21/08 at 8:30 in the morning. The surgery went perfectly. There was no resistance while everything was being put into the proper places and the device is in perfect working order. David spent the night in the hospital recovering. He was extremely sick upon waking up! He's home now and doing well.

Tomorrow the bandages come off. He can't wait for this, as they are really bothering him at this point. The stitches come out on Monday.

In a short month, David will get the external part of the device and be turned on for the first time. We're not expecting any miracles, and we know that there is a lot of hard work to come, but we're both incredibly excited to begin the next leg of the journey!