Cranky Joshua, 120 channels

Josh was cranky when he woke up this morning. I don't care if he just turned three, that boy needs coffee in the morning!

Anyway, Matt was a HUGE help getting Josh pointed in the right direction. Josh watched Matt put on his CI, Josh put his own on (with my help). No complaining this time. Josh watched Matt dress, Josh got dressed. Thanks for the help, cool big brother! :)

Okay, next topic. There's been some recent discussion on forums about AB's future 120 channel programming. I'm not a techy-type person, more of a mommy. But there were some amazing posts that described the technology very well. As well as some vague descriptions of users in the testing of the product. I guess they can't be very specific about how things are until the testing is done. I'm waiting to hear back from them, with their permission to put their posts on this blog, too. I'm very excited about this kind of upgrades for my boys' CIs.

Well, I responded to the posts, too. Here are my responses:

Date: Thu Dec 15, 2005 5:56 am

I'm not an electrical engineer, but as a mom I have to ask: Why would we only need "roving channels" to select which electrodes to use for sound when more could be activated? How do my ears hear? Is only a small part of the cochlea and auditory nerve used with each sound? Sound is a very broadly defined sensation. If two (or more)vastly different sounds were played at once, how would the implant/ear choose which to process, which to stimulate? I would prefer a broad window of input, high signal processing and fast overall stimulation (over all 16 electrodes), as close to that of the human ear as possible.

It is very true that some folks very strongly prefer one processing strategy over another. Especially if they're used to one or another. The 90K implant offers a variety of stimulation strategies: simultaneous, partially simultaneous, and non-simultaneous options including HiRes (HiRes-P and HiRes-S) and emulation of MPS and CIS with current software. If I were implanted, as my sons were, I would want to have this range of strategies to choose from.

The 120 channel programming is not "unrealistic", it's being tested right now. One adult in the testing has blogged a little about her experience with it at: http://debrah.blog.com/ . She also comments on Michael Chorost's book "Rebuilt" where he talks briefly about his experience with testing "121-channel software". I don't know the stimulation specifics, HiRes vs. 120 channel programming, but I am very excited by the advances and anxious to read the results of testing.

I remember when my family bought its first home computer, how strange and new it was. Now my boys have "little computers" in their heads to help them hear! The technology is wonderful, the products ALL keep improving. We feel very blessed to have access to this technology right here and now. :)

Date: Thu Dec 15, 2005 4:48 pm

Okay, again, I'm not an expert, just a concerned mom. And for this I understand why we non-pros may not fully understand the technology of "current steering". With this technology, all electrodes are stimulated in each cycle, not only a few. But at the same time "virtual channels" are created through ICCE technology (I know, I know, another acronym) between the actual 16 channels. These are created through the simultaneous stimulation of two adjacent electrodes. The actual programming that creates this is way over my head, I'm just summing up the basics. But the virtual channels have the ability to provide over 5 times more pitch information at onetime--from 16 to 120 points of stimulation! Pretty easy to understand this is a great benefit!

Here are a couple of more resources to better explain/describe the 120 channel technology:

http://www.healthyhearing.com/library/interview_content.asp?interview_id=72
08/1/2005
Interview with Mary Jo Osberger Ph.D, Director of Auditory Clinical Research Advanced Bionics
Topic: Completely Implantable Cochlear Implants, Current Steering,HyBrids and miscellaneous CI issues.

http://www.wired.com/wired/archive/13.11/bolero_pr.html
My Bionic Quest for Boléro
He's been haunted by Ravel's masterpiece since he lost his hearing.
A deaf man's pursuit of the perfect audio upgrade.
By Michael Chorost (re: second half of long article)

Happy reading! :)

Noisy Toys

Yup, I'm still thinking about that first Christmas with Matt's new hearing. We bought him toys with sound, and he loved them. The toys and sound were new to him them. Now he plays his games like any other kid. And I've found that he can plug into them, from the headphone jack directly to his processor. Then he can hear the game, I can't. I need to get those wires out and make him do that more often. :)

Josh likes his noisy toys now, too. I have a little Leap Pad toy with just the alphabet on it. It's small, fits in his lap just right. He was playing with it on the way to school yesterday, just listening to the letter sounds. At a red light I turned and asked him where the "T" was (he's worked on this letter at school, recognizing it), and he found it! We've used a lot of toys with "voice", and I think the Leap Pad products are the most true to sound. Matt prefers them and says they're easier to understand, too.

I try to work with the boys each day. Sometimes I forget about Matt, just take for granted that he's doing so well right now. But a couple of weeks ago we started something new with him. While playing back a recorded program, Rudolph's Shiny New Year, I would pause the show and ask Matt a question about something that was just said. Something like, "What is the Baby's name?" "What is the bird's name?" "What island are they on?" Matt watches the shows, understands what's going on, but doesn't pay attention to the details sometimes. At first he didn't understand some of the words, what exactly was said. Then I'd tell him the name, we'd replay the segment, and he'd get it! And when the name was said again, he'd pick it out in a flash! Matt is very easy to work with, tolerant, and seemed excited to be "hearing" even better. :)

My husband and I studied Russian in the past. While it was easy for me to read the language, listening to actual Russian programs and conversations was more challenging. When I would have a list of key words in front of me, what to listen for, comprehension was much easier. And with practice I didn't need that help, the language just "clicked" for me. When I work with Matt and "TV listening practice", it reminds me of when I was studying Russian. Practice, practice, practice...

Matt's dad bought a video game a couple of years back, Socom on Playstation. Something like that. I don't know much about video games. But this one used a headset and microphone that the player had to speak commands into for his team. Matt used it! I was shocked. Hubby would be playing the game, tell Matt what to tell the team, and Matt would tell them. I'm not a huge fan of any games, but how could I tell them to stop playing that one?

Sometimes toys with all the bells and whistles (literally) drive me bonkers. I find it very difficult to have a quiet moment in my house with three active boys. I crave peace, quiet and calm. But I also appreciate moments like Josh looking from one room to another for the "skiing snowman" when he hears its music playing. To me it's an annoying toy, you press its hand and it skies across the room while playing the same loud song each time. But sometimes when Josh hears that music, one of the other boys playing with the snowman, he'll walk around looking for it. I don't like the music, but I love that Josh hears and recognizes it, specifically looks for the snowman skiing across the room.

Writing these thoughts and memories in this "journal" format has been helping me keep things in perspective. Although I do sit down and do "therapy" with Matt and Josh (Matt-moreso reading aloud to help his speech and comprehension, Josh-Listening for Littles), I'm finding lessons for them in everyday activities like with the TV shows, Leap Pad toys, playing with stuffed animals, and when cooking. Josh LOVES to help with cooking! When the boys are having more fun, they don't see the therapy as "work". Oops! That remind me that I need to file my first report for John Tracy Clinic lessons! Another good program. :)

Well, those are my thoughts for the day. I really need coffee before the boys wake up, before the noise begins again...

Joshua's 3rd Birthday, Remembering Matt's 3rd Birthday.

Joshua just turned 3! Hooray!!!!! (His tongue is blue from the cake frosting.)

Josh is so adorable! We had a small family party for him, with just a couple of friends. Family had sent cards and some great gifts, and Josh was THRILLED with every present. Trains, Corduroy and PJ's, exactly what he "wanted". Thank you everyone, from Josh! :)

We half debated having a bigger party for him, like we did for Matt years back. But our schedules were a little crowded, plans changed. I asked Matt if he even remembered his 3rd birthday, it was quite a large event. He couldn't even remember where we were living at that time.

Matt's party was quite large. It was also his Dad's birthday party, too. There were family and friends spilling out of the house, grilling out front, and even swimming in the pool across the street. We had a blast! There was a good mix of friends, too. Matt was going to the State School for the Deaf at that time, so a few friends and their families from there showed up, as well as some deaf folks who worked on post. We had come to know a few as really good friends.

We especially remember one conversation Hubby had that night with two deaf friends of ours who worked on post at the time. They asked Hubby why were choosing to implant our son. Hubby told them that while we fully accepted his deafness, we wanted to help him have more access to the hearing world, too. Broaden his "options" for the future. Their response was very interesting, and accepting. One of them was brought up at a school for the deaf with very little oral speech. The other man was brought up "oral", I can't remember his schooling or if he had hearing aids. The one that wasn't very oral admitted he thought his lack of communication skills with hearing peers actually kept him from progressing in his career. He wanted to move into higher management positions, but knew that would be more difficult.

This man and his wife have become very dear friends of ours, I think about them often. His wife is hard of hearing, a hearing aid user, while he uses no amplification. She had suggested to him that maybe he could get a CI to help him hear, but he seemed very content with his life as it was. His parents had forced hearing aids on him, even when they didn't benefit him. As soon as he left home, he stopped using the aids. He was very happy with the life he had created for himself, didn't see a need to change or alter that with a CI. A personal decision that was his. Interesting note is that his wife's hearing has since deteriorated, and now she is going through the CI candidacy process, her own decision.

We make decisions for our boys all the time, part of being a parent. Some of those decisions are not easy. Choosing an implant for Matt was not such a hard decision, though, as he had heard sound with his hearing aids, very much missed that sound when his hearing failed him. When his CI was activated, we still used sign language with him, that was his first and primary language at the time. But we also worked very hard to help his auditory learning and speech improve, too. Why wouldn't we? That was a primary reason why we chose a CI for him. Matt still knows sign language today, although he has forgotten some. He asked me recently if I could help him learn more. We've picked up some books and videos at the library, and use them at home.

We celebrate our special dates with parties, but we also use the time to look back on our memories. Hubby was in Iraq for Josh's first birthday, Josh was not yet walking and had very little communication at all. Josh had just started walking by his second birthday (vestibular and other issues), he had his CI, his receptive language was starting to develop, but not so much his expressive language. Now that Josh is three I am chasing him around more, he likes to climb on top of things, is using his expressive language a little more each week, signing and vocalizing (still needs a lot of help). It will be very interesting to look back at his next birthday, to see how things have changed even more. :)

Matt's Poem for Mommy

Matt (with a lot of help from his Dad) wrote this poem for my birthday, which also happened to be Thanksgiving. Matt read the poem for our whole family to hear. This poem means quite a bit to me, and just thinking about it has kept me motivated with ALL of the boys. :)

Matt's Poem for Mom's Birthday

I wake without sound, every day of every week.
My Mother comes to greet me, soft kisses on my cheek.
With her comes the world of sound, a pleasure to my ear--
I know it’s due to her hard work, that I even hear.

I don’t know how to thank her now, but will later in life
As I find my own way, home, children and wife.
After 20 years of her hard work I hope she’ll stand and say,
"I’m glad I worked to make my sons the men they are today."

Matthew the Wolf Cub, Christmas

This is a photo of Matt when he "crossed the bridge" from Tiger Cub to Wolf Cub. Have I mentioned he's a cool kid? :) We try to expose him to many different activities, figure out what his likes and dislikes, where he'll feel comfortable and have fun. Cub Scouts ranks high on his list of favorite activities. He is part of an amazing troop in our new area, hanging around with the same kids that are in his mainstream class. He has so many friends here I'm just amazed. He's walked home from school with a couple friends now, and their parents report back to me, "Matt is a WONDERFUL boy! (Of course, I knew that...) My son loves him! He talks so WELL! "

Oh, and the girls talk about him all the time, too. Now, I'm not as thrilled about that, but it still makes me laugh a bit. Last week I bumped into a mom who said, "Oh, YOU'RE Matt's mom! My daughter was in the back seat fighting with her friend over who has Matt in their class most. I asked who Matt was and they both got embarrassed quickly. 'Nobody, Mom! Just a boy at school!'"

I remember when we first found out Matt was deaf (posted back in June archives), and it was like the bottom of our world had dropped out. Then all the doc visits, schooling, therapy, just a lot of hard work for all of us. He's been implanted for over four years now and we hardly think of him as "deaf". Matt IS deaf, is always working to improve his speech and listening skills. But he is so comfortable with himself that he can meet all sorts of people and do many activities with ease. He isn't "the deaf boy", but the cool kid on the block with all the video games or Star Wars toys (yes, I'm shamed, blame Daddy).

He has done very well with what he's been through, his CI journey. His spirit encourages me to help him more, and work to be a the best mom I can to the other boys as well. He and Daddy wrote me a poem for my birthday, which happened to fall on Thanksgiving as well. I will try to find it and post it later tonight.

I think the holidays really have me in a good mood. Mostly because I will never, EVER forget that first Christmas after Matt's CI activation, when he "heard" Christmas music for the first time. What a wonderful present for him! And our present, watching him fall in love with the music, too. He's actually singing Christmas carols now, and to me he sounds like an angel. It's very neat to look back and remember these things. Interesting to think about what the future holds, too. :)

Pic of Joshua and Mom

Okay, one more photo, a pic of me and my "little one". I know Josh is almost three, he's actually large for his age, but he'll always be "my baby". :)

Pic of Matt, Chris and Josh.

Now THIS is one cute picture! The boys really do spend a lot of time together. I think Josh's favorite friend is Chris, and Chris doesn't know what to do when Matt isn't around. We're really blessed that they get along so well.

Both of the CI boys, Matt and Josh, have their BWPs on in the pic. I think you can see the cord running from their headpieces to their processors. We absolutely LOVE the BTEs, and they wear both around the house. But when Matt is at school he uses the BWP with the Phonak Microlink. We still haven't had the BTEs switched and remapped so that he could use the new iConnect, but that will happen. HE CAN'T WAIT. He could wear his CII BTE now, but chooses his BWP for school, the BTE for home.

I keep the BWP on Josh more now when we're running around. We need to get a new ear mold made for his BTE. With a good, comfortable ear mold, we don't seem to have a problem with Josh's processor physically staying on. To be honest, when we're out and about I'm more worried about Josh taking his BTE off and playing with it, though. That's just Josh's personality. Since he's become more mobile he's been quite a handful to chase! When he wears his BWP, he uses the Pediatric Processor Harness (http://www.bionicear.com/products/prod_dev.asp). He is so used to putting it on and taking it off that it's just become another piece of clothing for him. It is wonderful, doesn't get in the way of his car seat use, sticks out very little under the sides of his shirt. With Josh's long hair, most people don't even notice he's wearing a CI! He's such a cutie pie!

Okay, I need to keep moving. The boys are playing in the basement now, and things are a little too quiet...