Bionic Boys

Whew! Update...

2009-11-16T03:59:00.000-08:00

It's been a long while since my last post. My husband is in the Army, was in a unit that deployed to Afghanistan. To say our last couple of years was busy would be a huge understatement. I think we moved just after my last post, and moved again a few months ago. Whew! Matthew is now 11 and in his 9TH SCHOOL (I know, can you believe it?), fully mainstreamed in 6th grade and doing real well. Joshua is now 6, and in the first grade at a school for deaf children. He has been diagnosed with additional disabilities, and while he does get use of his cochlear implant, his main form of communication is with sign language. It's amazing how each child has the exact medical diagnosis (Pendred Syndrome: Mondini Dysplasia, Enlarged Vestibular Aqueduct, Hypothyroidism), but they are also so very different from one another in their skills and abilities. As I've always said, "What works for one child may not work for the next."

Unfortunately, we've seen some poor educational support in the last couple of years. It took the school district over a year and a half to get FM Systems (read: assistive technology) to use in school. Before this district, Matthew had used an FM in three other schools/districts, and of course that was written into his IEP. I won't go into detail what all happened when I was wrestling with the school district, but it really helped to find a lawyer who could help. Fortunately only had to drop his name, and the FM systems were ordered that week. While Matthew did very well w/o the FM system for OVER A YEAR, his teachers noticed a huge improvement in his comprehension and attentiveness in school once he had one (no kidding, really?). Joshua's discernment had greatly improved, too.

Joshua has the need for additional OT, PT and speech classes. The last district didn't have OT (so he tested out of it, of course), and spotty PT and speech. Fortunately, the program he is in now at a school for deaf children has ALL of those on staff. I was almost in tears, okay, I cried at his IEP meeting when I heard all of the support he would have at his school. We're still an Army Family, and I know that very well means we may move again. I try not to think about that, because I fear ever going back to a district like the one we just left.

Well, I'll post more. It feels good to be doing this again. Right now I'm headed toward a very large, fresh cup of coffee. One boy is already on the way to school, and two more need to get up. ;)

Seminars for Parents of Children with Cochlear Implants

2007-06-06T06:36:00.001-07:00

I just posted about The Listening Room and Hearing Journey, but wanted to add a link to GREAT online courses for all types of folks associated with cochlear implants.

The Bionic Ear Association offers live and recorded web classes for professionals who work with cochlear implant recipients, adult CI users, as well as parents of CI children. You can find a schedule of live classes, as well as a list of recorded presentations here. I've personally been soaking up all the classes I can that are related to the Listening for Littles program.

I have three boys, two deaf with cochlear implants. I am SO THANKFUL for all of the resources I've found through the internet! There is much more information available to us since our first son was diagnosed deaf almost seven years ago. ;)

The LISTENING ROOM!

2007-06-06T06:04:00.000-07:00

I THINK I've blogged about this before, but if so I feel the need to share again. I am finding GREAT resources for both of my CI boys at The Listening Room! My CI boys are now 4 and 8, with very different oral and auditory skills, but I find the activities from the Listening Room to be great for both of them. There will be additional resources added for Teens and Adults soon, too!

"A web resource full of (re)habilitation activities and ideas to support the development of listening and language skills in children, adolescents and adults."

The Listening Room is part of Hearing Journey.

"If you or a loved one is on a journey to find the best possible hearing, you have found an online community of fellow travelers who are on the same journey. A journey filled with hope and exciting possibilities for a brighter hearing future. You'll find lively discussions, new friendships, and reliable information on the latest in cochlear implant technology here. Wherever you are in your hearing journey, we warmly welcome you. Come on in!"

These are a couple of sites I'm really enjoying, just had to share them with you. Enjoy! ;)

Auditory Skills Practice!

2007-04-05T09:31:00.000-07:00

I have just discovered that our library subscribes to TumbleBooks, a virtual online library of books and games for young readers! While it's $29.95/year for a family to subscribe to this service, if you Google "TumbleBooks" you will find links to many libraries that have already subscribed to the service, offering it to you through them. Here are two places to find TumbleBooks:

North Greenville Public Library (also has links to kids' eBooks, cool sites and more online games)

Contra Costa County Library (again, a bunch of OTHER cool links as well)

FUN!

When going through the Story Books, I've found them well illustrated, and the words highlighted as they are spoken. I'm sure my 6 year old "hearing" child will love these books, but I'm also hoping the highlighted spoken words will help my 8 year old son w/CI improve his auditory skills and literacy by following along with the stories. ;)

OOOOH! Just found another good resource:

Starfall, "Where children have fun learning to read!" Good phonics/auditory skills practice, too.

Enjoy!

Have ya heard about the new Harmony?????

2006-12-15T09:31:00.000-08:00

My boys don't have the new Advanced Bionics Harmony BTE processors yet, but I've been keeping my eyes open, looking for experiences others have to share w/the new technology. Here's some of what I've found:

Michael Royer's video on YouTube (video is a little shaky): "A brief look into my hearing loss and using the Harmony processor."

Michael Royer's Blog: Where he shares more of his experiences.

The Bionic Sound Project: "Twenty-something female from the united states. lives and breathes for music and sound. profoundly deaf since birth. unknown cause of deafness. bilateral hearing loss between 95-110 dB. type of hearing loss is sensorineural. loss identified at 2 months old, fitted with hearing aids at 4 months old. mainstreamed entire life. learned sign at age 17. tried for FDA trial in 1997, missed cutoff by 1% due to doing too well. has gone through the evaluation process at least 4 times, and got scared. finally took the plunge and implanted july 2006." Blog.

A Music Lover's CI Journey Very neat reading.

Other CI stuff:

What a CI Is, How it Works: Great little video, great info.

Tehya's Activation: "The day that we had been waiting for - FINALLY! We were all very excited during the session and were thrilled that Tehya had the reaction she did." Video.

Jodi Speaks Her Mind: A blog that includes info on how her implanted daughter is doing. I love my boys, but this little girl is so cute!

Cochlear Animation: VERY neat video clip.

Bionic Ear Buddy with CI Equipment

2006-12-15T08:53:00.000-08:00

Yes! You, too, can be the proud owner of an implanted little monkey! Click here for more info...

We received one of these when Little Guy was implanted, but I'm thinking about getting another. Believe it or not, in my very chaotic home, we have yet to loose Bionic Buddy's processors. Not yet, anyway. ;)

Devon on Young and Restless gets his Cochlear Implant Activated!

2006-12-06T10:11:00.000-08:00

Oh, my gosh. I was going to wait and post later, but I'm watching the CI activation on The Young and Restless right now, and I'm in tears. Goosebumps. Totally.

I'm taping the show on my computer right now (Yeah for TV tuner Bday present!). I don't know how to post what I tape, but I can figure it out and I will post the activation scenes later. Wow. How VERY COOL!

Yeah! Here they are! Hey, sorry for the poor video quality, best this tired mom could do. AND if the closed captioning bothers you, just think about how frustrating it would be if you RELIED on the captioning. I included the captioning for a reason. ;)

Online Sign Language Lessons

2006-12-04T04:20:00.000-08:00

I've had some friends say they want to learn sign language. That's COOL! Here are some online sites that will help them, and you if you're interested, too.

Handspeak: "HandspeakÂ is a subscription-based website, consisting of American Sign Language (ASL) online dictionary, lessons and resources, including Baby Sign, International Sign Language, Emoticon + Bodicon (facial expression + body language), gestures, manual alphabet (fingerspelling) and numeral, Sign stories and arts."

American Sign Language Browser: video clips of signs

ASL Pro

Lesson Tutor: pictures of signs, words and more

Signing Online: "We offer web-based courses, designed to effectively teach you American Sign Language (ASL) at your own pace from anywhere in the world. The courses focus on conversational ASL and make extensive use of digital video to demonstrate the visual nature of signing. The courses are perfect for anyone wanting to learning ASL. State Board Approved Continuing Education Units (CEUs) are available to educators and Continuing Education (CEs) contact hours are available for nurses."

If you are learning sign for your job, or taking a course at school, I would HIGHLY recommend checking out the fee-based sites. They may be a great way to supplement what you are already learning.

While we DO sign in our house, we are also very consistent with helping our children increase their auditory and oral skills, too. I will try to post some sites and programs I've found helpful in that area, as well. ;)

My "Head Shot"

2006-11-18T12:04:00.000-08:00

This is just an example of what I do when bored, putzing around with my Photoshop CS2. ;)

I got the idea from the book cover in the previous post. My oldest son has the CII internal part, but my youngest son has the 90K. The 90K lays much flatter in his head. The surgery for this one took less time, only had a tiny bit of his hair removed, and left a much less visible scar than the procedure with the CII. Both boys are using Hi-Res programming with their processors.

This pic only took a few minutes, really. I haven't had much time to mess around on the computer lately, but wanted to get my idea down. I have a few more ideas, should probably sketch them out before I forget them.

Four Minute Video About Cochlear Implants

2006-11-17T17:10:00.000-08:00

HOW COOL IS THIS?????

Michael Chorost wrote the book Rebuilt: How Becoming Part Computer Made Me More Human. BTW, VERY interesting book.

But NOW on his website, he has recently blogged about a video he's in:

Anyway, here’s a cool video the Exploratorium, a science museum in San Francisco, made about cochlear implants, starring yours truly. It went up a few weeks ago and I only had a chance to watch it just now.

Before you click "play" to watch the video, to the right you'll find links to other great videos and information. Once you DO choose to watch the video, there will be links on the right to watch it with subtitles, or to download the video and transcript.

Enjoy! ;)

Using the FM and Closed Captioning for Movies

2006-11-17T16:16:00.000-08:00

This is the FM transmitter set up next to the TV's speakers.
Normally the teacher wears this part at school.

This is the tiny, wireless FM receiver hooked up to Matt's CI.
Very small and convenient.

We have two Phonak Microlink FM sets for the boys to use in conjunction with their cochlear implants. I'm a firm believer that this is one of the most significant reasons Matt is doing so well in mainstreamed education right now.

Right now Matt and Chris are watching X-Men 3: The Last Stand, and his FM is helping him with that, too. He's told me that he understands what is being said on TV, but when there is background noise (thanks to his wonderful brothers), I know he has more difficulties with hearing what is actually said. So tonight I've put the FM transmitter microphone next to the TV speakers AND set up subtitles for the movie as well. He LOVES this now and wants it for ALL movies! He's had his CI for over five years and his FM system for two years now. Why haven't I done this in the past?

FYI, the subtitles in this movie are more accurate than the closed captioning type. Don't ask me why, I don't understand. I played both at the same time and found out that the closed captioning type seemed to lag behind the subtitle print, leaving a gap between hearing the words and reading them. Matt didn't like this, he found it confusing to hear and read the text at different times (no duh, eh?).

I am love, love, LOVING the CI/FM combo. Now if only the good doc had implanted a LISTENING CHIP in to my son's head, then we'd truly be in bliss. Matt can hear well, but as most normal boys, he still doesn't "listen" to me. Especially when I ask him to walk the dog.

HA! I just had a sarcastically funny MOM thought. Maybe some nice engineer could program the processor to send a signal when I'm speaking to Matt and he's not responding, "Matt, your mother is talking to you. We KNOW you can hear her now. Please pay attention." ;)

200 Years of Deaf Life in America

2006-11-08T07:26:00.000-08:00

PBS documentary explores 200 years of deaf life in America

“Through Deaf Eyes,” a two-hour PBS documentary exploring nearly 200 years of Deaf life in America, will air early next year. The film was inspired by the exhibition, “History Through Deaf Eyes,” curated by Jack R. Gannon of Gallaudet University.

The documentary will air nationally on PBS on Wednesday, March 21 at 9 p.m. ET (check local listings).

The film presents the shared experiences of American history – family life, education, work, and community connections – from the perspective of deaf citizens. Interviews include community leaders, historians, and deaf Americans with diverse views on language use, technology and identity.

Bringing a Deaf cinematic lens to the film are six artistic works by Deaf media artists and filmmakers: Wayne Betts, Renee Visco, Tracey Salaway, Kimby Caplan, Arthur Luhn, and Adrean Mangiardi.

Poignant, sometimes humorous, these films draw on the media artists’ own lives and are woven throughout the documentary. But the core of the film remains the larger story of Deaf life in America -- a story of conflicts, prejudice and affirmation that reaches the heart of what it means to be human.

Major funding for “Through Deaf Eyes” is provided by the National Endowment for the Humanities, Corporation for Public Broadcasting, PBS, The Annenberg Foundation and the National Endowment for the Arts. Private individuals have also contributed to the funding of this project. The extensive outreach campaign is funded in part by Sign Language Associates. Outreach partners are the National Association for the Deaf, Gallaudet University, the National Technical Institute for the Deaf at Rochester Institute of Technology, and California State University-Northridge. As part of the outreach campaign, numerous local organizations, some in association with their public television stations, will mount events and discussions exploring the issues raised in the film.

A comprehensive Web site, found at www.pbs.org, accompanies the film. The site includes interviews with the deaf filmmakers whose work is featured in the documentary, while also inviting viewers to submit their own stories, photographs, and films. These will become part of the archival collection of Gallaudet University. A companion book is being published by Gallaudet University Press.

Other links for info:

Gallaudet: History Through Deaf Eyes
PBS Deaf History and Timeline
Interface, American Library Association

More CI blogs to check out!

2006-11-05T18:42:00.000-08:00

I have some great blogs linked above, but here are some that are even new to me. Thought I'd pass them along:

Michael Chorost, author of Rebuilt, his BLOG. Cool.
the DeafBlog, an awesome collection of material.
My Son Tom, this bilateral CI boy is so CUTE!
Hook Me Up, a music lover's cochlear implant journey.
Hear Again, an adult CI user journaling new experiences.
Happy Family at Home, a CI Mom's story. (SHE has the CI, and is a really cool Mommy Blogger, too!)

I have more, but hear a screaming son in the background. Will continue the list later...

Rush Limbaugh comments on his deafness and implant.

2006-11-05T18:06:00.000-08:00

I originally found this at Kokonut Pundits, am copying from there to share here. ;)

"Today from the Rush Limbaugh radio show a partial transcript can be seen here with him talking about his cochlear implant experience. The transcript below is him responding to a blind caller on his radio show.

Well, you've gotta great attitude about it, and I'm glad you called. I want to say one thing. You talked about the advantages that you have in being blind, and people think that's kind of odd. I can tell you some advantages being deaf. Now, these advantages are predicated on the fact that I lost my hearing -- you want to know why I believe in God? There are countless reasons, ladies and gentlemen, countless reasons and I've mentioned many of them during the course of discussions of the environment and so forth, but you look at the timeline of humanity on this planet, whatever it is. I don't know, 10,000 years, a hundred million years.

Whatever it is, my little speck on that timeline happens to coincide -- and look at my career now, what I do for a living. My little speck of that timeline coincides with when science has invented the cochlear implant which allows 100% deaf people to hear, and particularly in speech. You get in loud, noisy areas, restaurants, and it becomes very, very difficult because the thing just amplifies all the noise it hears, and if you're in a restaurant with a couple other people, the other people's voices are much louder than the two you're trying to hear, so it really becomes a challenge. But in a situation like this, one-on-one speech, it's not normal as it was, but it's miraculous.

But there are times at restaurants I just lose my mind. So can I turn the volume down, or I can take it off -- and there is blessed silence. How many of you people can't sleep through the night because some noise wakes you up? I never hear the noise. You who can hear do not know what pure silence is, because you can never. You can plug your ears up. You can put muffs and headphones on but you're always getting the white noise of a room, but when you're totally deaf? I can tune anything out. I can. If I'm talking to somebody and I'm tired, I just take it off. It sends the message I'm through. I don't have to listen to the racket on the TV. I can read closed-captioning.

You can do that too by hitting the mute button, but the ability to just totally turn off noise and to not have the normal distractions, when you're trying to sleep or when you're really trying to concentrate and noise distracts you. I can turn all that off. (interruption) I can feel my heartbeat. Of course I can. Snerdley is asking me, "You can't hear the heartbeat but can you feel it?" If I slam a door without touching the door, I feel the door slam. I don't hear it.

I mean, I don't slam it. I'm just giving you an example, but there are a number of things like if I slam the car door. I don't hear it, but when I see it happening, I feel it. There's a particular sensation, those kinds of sensations. Toilet flushing? I don't hear it, but there's an awareness of it, and I think that's the brain, because I used to be able to hear it. It's like the way I hear music. I can't hear... Well, I can hear it. I can't listen to music and understand it unless I've heard it before. I've got eight electrodes in my brain covering for what used to be 40,000 active hair cells so there's not much frequency response for me.

Every note of every new piece of music that I've never heard before sounds the same note. Movie sound tracks or what have you. But I listen to music that I knew before and my memory is what supplies the melody so I know that there's sounds taking place. I'm still very much concerned if the noise in a room is too loud so I'm constantly keeping it lower, even I can't hear it. But just out of habit. The brain is a powerful thing, and the amount of control we think we have over our brain; it would be surprising to you when you realize you don't. At any rate, I gotta take a break here. Charlie, thanks for the call."

CIs on The Young and the Restless?????

2006-11-01T09:05:00.000-08:00

From the Y&R website:

Dru and Neil risk arrest as their alibis begin to unravel, but they are soon faced with even bigger concerns when suspicion falls on Devon. Meanwhile, Devon faces a crisis when his attempts to have cochlear implant surgery are postponed by Carmen's murder investigation.

From SoapZone.com:

Dr. Campbell says these pamphlets should answer some of the answers some of her questions about sensorineural deafness. There's some good treatment options in there. Dru thanks the doctor as she passes one to Devon. The woman asks if has and as many questions as she needs to? Dru asks what about a implant? She has read alot of advancements have been made with that kind of technology. The Doc says when the time is right, she should definitely consider cochlear implant. There's been lot of progress. People have experience great success with them. Dru says that "hear that baby" But she foolishly realizes that he doesn't. The woman tells her not to be hard on herself. It's going to take all her time to just to Devon's. But all Devon sees her lips moving. The woman adds learn anything he can. He has one of the best specialist in the country here.

From the CBS website:

Hearing Impaired (October 2006)
It has never been an easy life for Devon Hamilton, and it just got a little harder. After contracting Meningitis Devon suffered a huge loss -- his hearing. CBS.com gave his portrayer Bryton a call to chat all about this new challenge for him and for Devon.

WOW! What do you think about this? Cochlear implants in day-time storylines? VERY interesting!

Happy Halloween!

2006-10-31T08:31:00.000-08:00

Here's a pic of Matt, in his school's Halloween "parade". Can you believe, he turned eight last summer, is in his seventh school, is mainstreamed in third grade now, and is doing GREAT! YEAH! Matt's finally making some good friends at his new school, too. Unfortunately I had to crop them out of the photo as I haven't yet asked their parents' permission to post thier pics yet.

Mat has now had his CI for five whole years! Nothing could have prepared me for everything we've been through. A bit of struggle at times, but amazing blessings, as well. I can only imagine what will come with the next five years. ;)

Whew! It's been a long time since posting!

2006-10-25T02:12:00.000-07:00

We've had a busy summer, and the boys are settled into school. YEAH! I want to start posting here, again, thought I'd start with some more recent pics of the boys. Enjoy! ;)

FDA Approval of Advanced Bionic's HARMONY!

2006-10-25T02:00:00.000-07:00

Source: Advanced Bionics
Publication Date: 9/28/2006
Author: Advanced Bionics

Natick, MA (September 27, 2006) -- Boston Scientific Corporation (NYSE: BSX) today announced the approval of its new Harmony™ HiResolution® Bionic Ear System (Harmony System) by the U.S. Food and Drug Administration (FDA). Developed by the Company's Neuromodulation Group, the Harmony System delivers 120 spectral bands, 5 - 10 times more than competing systems, helping to significantly increase hearing potential and quality of life for the severe-to-profoundly deaf.

"The Harmony System represents the next generation of cochlear implant technology," said Jeff Greiner, President of Boston Scientific's Neuromodulation Group. "We have brought together unprecedented advancements in science, design and functionality for the user - furthering our commitment to restoring hearing and improving quality of life for those living with hearing loss due to permanent inner ear or auditory nerve damage."

Designed to enhance music appreciation and improve hearing in a variety of difficult listening environments, the Harmony System couples revolutionary internal sound processing (with the optional HiRes Fidelity™ 120) with the new Harmony behind-the-ear (BTE) external sound processor. Together, the two key components of the Harmony System are designed to provide significantly enhanced spectral resolution compared to conventional systems for a more natural representation of sound to help improve patient performance.

"With the new Harmony System, we are able to actively steer electrical currents with a high degree of accuracy, increasing the number of spectral bands from 16 to 120," said Greiner. "We are attempting to guide precise pitch information into the cochlea by taking advantage of surviving neural populations to help increase the user's ability to hear in noisy environments and to better appreciate the intricate sounds of music."

Happy Birthday to This Blog! ;)

2006-06-14T07:51:00.001-07:00

I just figured out that today is my FIRST anniversary blogging! Can you believe it?

Click here for my first post ever.

My Chaotic Home blog isn't quite as old, but I've posted and had more "hits" there than on this one. But, sigh... So much has changed in a year! How neat to have it documented in the blog. ;)

AB Recall

2006-06-13T05:08:00.000-07:00

Yes, there WAS a recall a while ago. Supplier B's implants had a slightly higher rate of failure than Supplier A's internal parts. As soon as this was discovered, Advanced Bionics pulled all unimplanted internal parts and replaced them. I am impressed by their integrity and speed of action.

Did I freak out a little, wondering if my Little Guy was implanted by Supplier B's product. Yes, of course I did. So I called Sandy Mintz at AB (she has an implant herself!) and asked her about the recall. She said if there were any problems with my son's implant, we would have most likely known about it by now. We talked a bit more, and I immediately felt reassured and not worried about my Little Guy's implant. And I was even more impressed with the proactive actions on Advanced Bionics side of the issue.

I've also read about Linda's thoughts on this issue, and it helped reading about it from an adult user's point of view. As a parent, I enjoy hearing experiences and thoughts from adults who can better describe their feelings than my son. He has the VOCABULARY and SPEECH to tell me what he's thinking, but is an almost eight year old boy who likes to keep his thoughts to himself, too.

Well, bottom line is I'm not worried. We have since moved away from Little Guy's implant center, haven't heard from them, so I'm wondering if I'll get a letter from AB that he has Supplier B's internal part. How will I react if I get that letter? Right now I can tell you with certainty that it won't/doesn't bother me one iota. My son is doing fine, and I'm more concerned about how he will do with the 120-channel programming when it is released. Coming to an implant center near you, sometime in the future... ;)

Way to go, MATT!!!

2006-06-13T04:33:00.000-07:00

Matt tested so well on five different standardized tests, all normed for HEARING children, that it's been recommended to fully mainstream him. His speech teacher said if Matt wasn't deaf she couldn't write an IEP for him based on his speech because he was doing so well.

I've started the ball rolling with the district, have a summer full of papers and tests, but I'm very excited for our son. He wanted to be around other deaf/hoh kids last year, but we'll have to find another way to do this. I think his needs to hang with friends in the neighborhood at home AND at school is growing much stronger in him. The poor kid, because of our military family lifestyle, this will be his seventh school, and he's just turning eight next month. You name it, we've seen it, all across the country. We've been amazingly blessed with wonderful teachers and therapists along the way!

Hmmm... I've been thinking about bilaterals for him, too. Last week I met some AMAZING adults who have bilateral CIs, and was just floored by hearing them talk about their experiences. I've also been keeping up with Little Jack's progress, too. I would like MATT to talk with the adults I've met, too, see what "bi-CIs" looks like. I look forward to reading research on improvements in speech recognition and other areas, how bilateral CIs help vs. having one implant. But, come on, I'm thrilled my boys can even do so well with one! Yeah, technology!

I'm a little more on the fence re: bilaterals for the Little Guy, as I wonder if he'll need MRIs in the future. SURE the magnets can be removed for an MRI, and I heard the procedure isn't too difficult, either. But I don't know if I'd want to mess with an MRI and TWO CI magnets. These are my very personal feelings, I wish things were a little different but that's life. I'll talk with his developmental ped doc and CI team more about this, see what they think.

In the meantime, we are ANXIOUSLY awaiting the arrival of the 120-channel programing. I have no clue when it will be released, but I'm patiently waiting. HOW EXCITING! Deb has blogged a little about this, and so has Dan. I can't wait to read more someday!

Oh, wait! The Little Guy may be going to his school five full days a week, maybe with a mainstream pre-K for 2 or 3 days/week if that all works out. I'm looking at other options for him, just to keep my mind open to everything around us.

As a mom, I can't wait for school to start again! Did I type that? Isn't that funny how perspectives change? When I was little, I lived for summers. NOW I'm TRYING to make summer fun for my little ones. I really, really, REALLY appreciate the amazing jobs my boys' teachers have done. I don't think I could thank them enough for their patience and expertise. Sigh... ;)

The Boys in Action

2006-05-30T04:20:00.000-07:00

Here are the boys in action! Sorry for the poor editing, I had to cut out some personal stuff. I was trying to give you a good idea of Matt's communication skills, but Chris continually steals the show. I'll try to do a video "interview" of Matt later and upload another video. Enjoy! ;)

Summer Vacation

2006-05-18T10:16:00.000-07:00

I haven't been posting much because things have been going pretty well lately, status quo. No big surprises. Josh is communicating much better at home and at school. He seems to really know his alphabet, will sit and "read" a book TO me. In his own way. Yesterday he was counting EVERYTHING. He uses sign language, but is vocalizing much more, and consistently when I prompt him. Very cool.

Reading with Matt has been a VERY good experience. He is quite a trooper when SGT Mommy sits with him to read his books. His speech teacher said he tested very well, vocabulary is doing well, too. Just needs to work on his enunciation, dictation, you know the drill. I have a hunch he could fully mainstream IF he didn't feel so strongly about being around some deaf/hoh peers in school. I have to pay attention to the whole picture with him, not just his academic abilities.

This summer we have some options. But something that Matt has always wanted to do was start a local science club. So I'm thinking we're going to work together and plan a Summer Science "program" here at the house, maybe art and craft days, too. Then put together a calendar and pass it around to his friends and other neighbor kids. Many years ago I used to run a park program, all by myself. 20-60 kids at the park at any given time. That was WAAAAAAAY back when I had more energy, though. I think if I have a plan, pick a couple of hours in the afternoon to do the activities, we could have a really fun summer.

There are programs in the area for things like this, but I prefer to have something here vs. running around like a mad woman dragging three kids around. AND this may help us to get to know some other kids better, on our own turf. Matt LOVES science, especially interested in robotics. So I have a little research and planning to do now. Again, with good PLANNING this could be a lot of fun. Maybe I'll get to know some other parents, too!
Well, that's the update. Matt and Josh both have some cute schoolwork I should probably scan in for the blog. I love the idea that they'll be able to look back at their "story" someday, and share it with others, too. ;)

OOOOH! Speaking of stories, Little Jack, linked on my sidebar, just had his second CI implanted. I'm so excited for them! I encourage you to check out their blog and read about that, too. Very exciting!!!!!

What are your plans for the summer?

Time with Joshua.

2006-03-30T17:09:00.000-08:00

After church last week Chris (middle kid, hearing) told me that the children had prayed to God. And that God had told Chris personally that he had to spend less time with Matt (oldest son, CI), and more time hanging out with Josh (youngest son, CI).

Matt told Chris, "God can't talk to you, you can't hear him. I don't care what kind of ears you have."

Of course, I told the boys that God CAN talk to us, in our hearts. That we didn't need ears to hear his voice in our lives. I was actually at a loss for words at this point. A little shocked at my 5 year old's revelation.

But Chris must have had a true change of heart, because I've heard him several times the past week say something like, "Matt, I can't play with you right now, I need to spend some time with Josh." Each time I hear that I am floored. Absolutely FLOORED! Boy, that word looks funny when you type it in caps...

Anyhoo... Josh is one of those kids that has an ear infection, but you don't know about it until it does something like rupture his ear drum. I'm not kidding, it happened a few days ago. But my, oh my, he is doing MUCH better! The pressure must have been bugging him something awful, because he's been Mr. Chipper ever since it popped.

I thought he just had a cold, like everyone else in this house. In the future I will just have to play the overly paranoid mommy role and bring him in every time I suspect something. Like I'm not overly worrisome NOW. Bottom line, he's doing better. Sigh...

I need to write down some of the notes from the boys' schools. They are both doing VERY well! Josh's vocalization and use of language keep improving, little by little. Matt keeps coming home with papers for me to sign, only one or two wrong on his math and spelling tests. He's done some writing on his own recently, at home. I need to ask his permission to post something here.

Thanks for all of the nice comments lately! Please feel free to contact me if you have any questions. ;)

Matt at Cub Scouts

2006-03-13T00:58:00.000-08:00

I chose these pics because I think it's easy to figure out which kid is Matt. And to see how he's just hanging out and having fun with his friends. It's really cute how Matt's headpiece matches the flag patch on his shirt, too. He really loves those headpiece stickers!

I'm a Mommy, I worry about my boys. I work hard to help them with their communication, but I also spend time worrying that they'll "fit in" with friends, make buddies and have fun. Not only do the boys have to overcome some significant communication hurdles, but with us moving all of the time they have to constantly make new friends, too. I'm willing to admit that I probably worry too much, but that's just me.

So to help our boys out, we try to give them many chances to get out, meet other kids, and have fun. Cub Scouts has been a WONDERFUL experience for the boys. Only Matt is old enough for Cub Scouts, but Chris has tagged along with him the whole way, too. Matt has made a few friends in this group, the same boys from his mainstream 2nd grade class. He'll also be playing baseball with them next month. The coach is very willing to use the FM system, a big bonus for us.

For a some time this past year I was worried Matt was having some issues talking with these kids, communicating and behaving properly when in a large group. Then last week I overheard his mainstream teacher talking to the whole class (while I took the picture two posts below) about the exact same issues and specific incidents involving totally different kids in his class (playground behavior of other boys).

Then it dawned on me, I had one of those ah-ha moments. Matt is very much like every other boy in his class. Yes, I worry too much sometimes, but I also find it funny that I'm worrying about some of the same things most other parents worry about, too. And that deaf with CI, Matt is also a very normal, cool little boy. ;)

Laundry Day, Joshua!

2006-03-13T00:24:00.000-08:00

At first Josh was VERY afraid of our new laundry machine. He never was afraid of the old one, would hear it and knew what the sound was. Would touch the machine to verify that it was making that sound (could feel it working).

But when we bought the NEW machine, and he could see the clothes inside spinning, the water rushing in, he would watch it and scream out of fear! But he wouldn't turn away.

I turned this into a huge communication exercise for him. It was almost straight out of a "Learn to Talk Around the Clock" video, something I saw at a workshop in Rhode Island. We talked about the dirty clothes, that they needed water and soap to clean them, the clothes were taking getting washed/taking a "bath" in the laundry machine, then they needed to dry in the dryer, etc.

He VERY QUICKLY got over his fear of the machine and rather became fascinated with it. SO fascinated that we had to put a lock on the laundry room door to keep him out of the room. But when there's laundry to be done, and he's around to do it, he has absolutely taken over and won't even let us in the room except to help lift him to push the buttons. And put soap in, I won't let him touch the soap.

Josh's "laundry language" has absolutely taken off, too. Dirty towel? No problem. He'll take it from you and throw it down to the laundry, telling you about it all the way. He DOES vocalize all the time about it, too, but we need to work on that a bit more. I'm just thrilled that he's more comfortable using his expressive language (no problems at all with receptive "laundry language"). And with the added bonus of such a cute little chore helper? That's a big plus in my book. :)

Matt and his friends.

2006-03-10T05:20:00.000-08:00

Matt has made some really good friends this year. The two boys in the upper picture are classmates of his in his deaf/hard of hearing class. The lower picture is of him in his 2nd grade mainstream class. See him on the far left in the white shirt?

Matt was fully mainstreamed in first grade, and did VERY well academically. But we talked and talked, and he wanted to have more deaf friends, so now he takes some classes with the deaf/hard of hearing group, too. Most of the kids there have cochlear implants, just like him. Funny thing is, he's in second grade, but doing language and spelling work with the third graders in his small group. Way to go, Matt!

If you notice in the picture, Matt isn't sitting even remotely close to the teacher. She is using the Phonak Microlink FM system, and he hears it on a 50/50 ratio of input to his processor. I think this has been the single most important tool in helping him mainstream. I'M betting he hears even more than the "hearing kids" in his class!

When we moved to our new home, we chose to live near our sons' deaf/hard of hearing program. Because of this Matt sees his mainstream friends at church each week, Cub Scouts, in the park, and later this spring on his baseball team. We're very lucky that the baseball league we signed up with has a coach willing to use the FM system for practice and games, too. In the words of Matt's past soccer coach, "I LOVE this! I can talk to Matt, I don't have to yell across the field to him. I wish ALL the boys had this thing (the FM system)." How cute!

Josh takes to the computer!

2006-03-10T04:55:00.000-08:00

There's my boy! He's lucky enough to have a really neat computer at school, just his size. So what is he working on, a new web page? Maybe a blog of his own? His teacher says he's doing VERY well and quite smart, too. Recognizes his ABCs, is counting better each day, and he just turned three! His speech is coming, albeit slowly. I've had some good talks with his teachers about this, too. But computers like this one, donated to the boys' school, make learning so much more FUN!

I don't think we ever used a computer in my classrooms. Kids are really lucky these days. :)

Free Web Classes through the Bionic Ear Association

2006-03-01T13:42:00.000-08:00

The Bionic Ear Association Introduces

2006 FREE Web Classes for CI Candidates, Recipients, and Parents

SAVE THE DATES!
To register for a live session, access a recorded session, or for further information regarding these Web classes visit our website at www.bionicear.com/support and click on 2006 BEA Programs.

LIVE SESSIONS
All live sessions are offered at: 9 AM PST and 12 PM PST*Following each live session, the recorded version will be posted on: www.bionicear.com

March 9: We CARE: Introducing our New Aural Rehabilitation Programs

March 14: Tuesdays With Mary: Cochlear implant “Pre-hab:” Establishing listening and language skills prior to cochlear implantation. Presented by Mary Koch, MEd

March 16: What Parents Need to Know About Early Implantation: Candidacy, Benefits, and Performance*

May 11: Music and Cochlear Implants*

May 17: What Cochlear Implant Children Need in School*

June 20: Tuesdays With Mary: Making Therapy Fun: Motivation, Expectation, and Structure! Presented by Mary Koch, MEd

July 20: Auditory Training for Teens and Adults*

September 12: Tuesdays With Mary: Tool Time: Listening Activities for Infants and Toddlers

September 21: Cochlear Implant Update*

December 5: Tuesdays With Mary: Tool Time: Listening Activities for the School-Aged Child. Presented by Mary Koch, MEd

*Sponsored in conjunction with AG Bell Association

RECORDED SESSIONS
Available now on http://www.bionicear.com/! More on the way!

FOR ADULTS AND PARENTS OF CHILDREN WITH HEARING LOSS
+Understanding Hearing Loss and Cochlear Implants
+Becoming Familiar With Cochlear Implants
+Connecting Cochlear Implant Accessories to ALDs and Telephones
+Interfacing the Auria® iConnect Adapter With the Phonak MLxS
+Cochlear Implant Programming

FOR PARENTS OF CHILDREN WITH HEARING LOSS
+Top 10 Questions for Parents of Infants and Toddlers Considering a Cochlear Implant
+Pre-Cochlear Implant Assessment With Infants and Toddlers
+Getting Ready to Work With Infants and Toddlers With Cochlear Implants
+Teaching Activities for Infants and Toddlers With Cochlear Implants
+Setting Expectations and Communication Goals
+Tips for Successful Communication Between School Professionals and Parents
+Meeting the Needs of a Child With Multiple Challenges

I love our insurance!

2006-02-28T04:30:00.000-08:00

It's time to order new batteries, wires and headpieces for the boys. I was prepping to do a ton of paperwork, re-enroll them in the Army's Exceptional Family Member Program (have to do this every three years, as if they weren't still deaf with cochlear implants...), enroll them in the new program for durable medical equipment supplies, ECHO, and then prepare all of the forms necessary to order equipment under that program.

Since we aren't near a typical military facility now, I didn't know to whom I would submit all of these papers to get the ball rolling. Army One Source, a number we can call for answers to everything, and I mean everything, directed me to Sue Ellen Braden, the EFMP coordinator at Dewitt Army Hospital. I think that hospital is on the post where my hubby's HQ is located. She faxed the old EFMP documents to her higher ups, I think, and the boys are re-enrolled. I think they figured out that once you're deaf with an implant, that doesn't really ever go away. Then she put me in contact with the insurance coordinator who said these items are now covered under regular services, no extra paperwork needed. YEAH! But that she'd enroll them in ECHO, anyway, as we may need their services later. I will keep putting together paperwork on that in the meantime.

I have an audiology appointment for Josh today, and have all of the papers needed to hand over to the CI dept., to order new equipment. I am so THRILLED! The process under the new insurance is MUCH easier than the old system. For once I have seen progress through the changes. I don't know how long it will take to put the paperwork through, get the equipment, but I am just tickled pink today that this load of TODOs is off my back. I was so grateful that I wrote a note of appreciate to the Patient Rep at Dewitt Army Hospital in regards to Sue Ellen's superior service. YEAH!!!!!

Fantastic Flubber!

2006-02-26T06:01:00.000-08:00

Nope, not directly a CI related post. But don't they look like they're having FUN? We had a quiet, relaxing day at home, ended it with some Flubber making fun. Cute kids!

Dancing with Joshua.

2006-02-25T06:40:00.000-08:00

Preface: I'm supposed to be cleaning the house.

Reality Check: You simply have not danced until your cochlear-implanted young deaf son turns the dial on the radio until he finds some music (little dude doesn't dig talk radio), drags you into the living room and tries to get you to dance. Dance, you must! You can clean more later...

Josh has taken a strong liking to music lately. He'll point to his ear when he hears it on the radio, TV, in the store, you name it. He's wide awake, bright-eyed and bushy tailed right now, wanting to boogy. And when that cute little hippy-haired toe-head pulls me into the living room to dance to "Kung Fu Fighting", I will dance every time. :)

Apple Bubble!

2006-02-24T13:33:00.000-08:00

Clear as a bell, Josh is saying the words, "apple" and "bubble" now! Yeah for Joshua! I just offered him juice, he saw the apple on the juice box and said, "apple". Floored me. Might not mean much to some folks, but hearing him say that just tickled me pink! His teacher yesterday said he was doing better in speech, said, "bubble" perfectly, too. So I tried him with this, and yup, he did it! All of the work we do to help him is really paying off. It takes more time with some than others, but I'm so excited to see the progress. As his muscle tone improves, I'm much more certain now he'll be able to make more sounds clearly. Very exciting for all of us.

Then there's Matthew. We worked very hard with him, he attended great schools and had amazing therapists. And now he talks and talks and talks and talks, won't stop. I guess THAT'S good, too. :)

Josh's tinnitus and residual hearing. Vestibular problems.

2006-02-23T23:20:00.000-08:00

Wow. Interesting title, eh? I have a good stat counter, so I can kind of see who's "visiting" this blog. PLEASE leave comments, suggestions, ideas you may have to share. That said, back to Josh.

Big, no, HUGE ah-ha moments for me tonight. One now, just past 2 in the a.m., that is such a big click in my noggin, I have to get it out on paper so I don't forget about it.

Yesterday Josh's teacher and other staff said he did GREAT in school. But he hit a brick wall, was very tired and crashed in the truck on the way home. But I didn't take him home, went to a friend's house w/even more kids around. Woke him up from his deep slumber to a small group of chaotic kids. He was burned out. Didn't melt down, but wasn't interested in hanging out and kind of stuck to himself. Normally that wouldn't bother me, I know he's fried after a full day at prefers to be on his own. So I really kept my eye on him when we finally did get home.

He started to communicate much better after he had a chance to unwind at home. It was nice to see him perk up, even though he was exhausted after a long day. Then after I took off his CI, before bath time, he pointed to his ear to signal he heard something. Oh, interesting... Then he started to make his high pitched sound, I'd call it an "almost yodel." Only way I can describe it. So I made the sound, loud like him, and he stopped and said he HEARD ME. He was not looking at me, he did not have his CI on. I tried this a bunch of times with him, high pitch and low, and he responded. Not to different words that I tried, but to the sounds themselves. Could it be from "feeling" the sound? He responded when he was across the room from me, too. I had to cup my hands around my mouth, almost like I was trying to make the sound louder (as when yelling to someone far away), but he turned around and signed he heard me. Wow. First lightbulb moment, he does have a bit of residual hearing. Maybe he makes the loud sounds sometimes because he can actually hear them a little?

Then, lying awake at 2 in the morning, not unusual for me, I thought about this. It finally dawned on me that I was so caught up in the thought that he may have some residual hearing that I completely forgot he had pointed to his ear FIRST, then started making his sound, then responded to my sounds.

Flashback: Matthew is not quite three years old, going through a horrible time of vestibular problems, residual hearing dropping with each "off balance spell", hearing aids not helping him anymore, didn't yet have a CI. He would tell me, w/o his hearing aids on, that he could hear things he previously heard w/ his HAs. Tinnitus. Clearly tinnitus in my book. He would describe it as helicopters (we lived on a Navy base w/active air traffic), a train, dogs barking, telephone ringing, baby crying, all things he had related to w/ his hearing aids. Post implantation, when he was hearing sounds with his CI, he was really freaked out at first. Almost to the point of scared that the sound was like before, when he had his horrible bouts of tinnitus. As soon as he could put something REAL with a sound, like a truck down the street, geese honking across the street, an actual helicopter overhead, he was THRILLED!!!!! Matt was 39 months when implanted, almost the same exact age Josh is now.

Back to Josh. He has been very excited lately to point out when the microwave beeps, or the dryer, or anything else making a beeping sound. He'll point to his ear, and go look for the beeps. When he hears the beeps, he knows his warm, chocolate milk is done, or it's time to take the laundry out. The kid is obsessed with the laundry. That's a good thing, but I doubt it will last, darn. Anyway, when he pointed to his ear last night, AFTER his CI was off, I'm just wondering if he was telling me he was hearing something like tinnitus. Then responding with his own sounds. I'm not sure what this all means, but it really has me thinking, my mommy wheels spinning.

What does this have to do with vestibular problems? The following are just observations, musings of mine. No diagnosis, nothing concrete here. He is all plugged up. I have noticed in the past that when he has a cold, his balance is more affected. Cold this lead to more problems with tinnitus? I am having bad problems with tinnitus right now. Not real bad, but noticeable. I'm also having a horrid time with allergies. AND I noticed Josh's eyes were a little red the last couple of days, too. In the way past, Matt's vestibular problems were their worst on days that were heavy with yellow pine dust. He literally lived on Benadryl for three months, which seemed to help tremendously. His doctor then told me that Benadryl is also a vestibular inhibitor. If Matt has one of his now rare off balance spells, Benadryl will literally stop it w/in 20 minutes. But Benadryl never affected Matt's activity level, it knocks Josh out. Should I try some Benadryl with Josh? Maybe a smaller than normal dose? Or Sudafed to see if that helps to unstop his sinuses, maybe relieve some pressure and thus help him out?

See, this is how my brain works, why I can't sleep some nights. Maybe I worry too much about my boys, but that's just how I am. When I figure out something that can help them, I get really excited about it. I have an appointment w/Josh's audie next week, I'll bring up the possible tinnitus and residual hearing with her. And I might need to think about getting Josh in to see someone about vestibular issues.

Back to those. Josh is progressing leaps and bounds with his balance and motor skills. He has reached a strong independent streak, won't let me help him into and out of the truck now. Wants to "walk the plank" at the park, you name it. And no coincidence, as these skills progress, so is his communication. Maybe not at the end of a long, brain frying day (my brain was done working yesterday, too), but he is doing much better at home and school. Willing to try new things with vocalizing that I wouldn't have even considered trying with him before. It's been very interesting to me to see how the physical and communication really go hand in hand. That's what leads me to believe that many of Josh's motor processing, expressive language and other delay issues may be related in some way to his vestibular problems.

He is progressing, at his own slower pace, but forward movement it is. On a much more positive note, now that he is expressing himself better, we're finding out how much he really has digested. His teacher will orally say, "It's story time. Go get the pillows (to sit on)," and he'll run to get the pillows. She said yesterday that he recognized may of his alphabet letters with a new puzzle she had, and he's just past his third birthday. That's pretty good in my book. When I introduce a new word to him orally, he's picking it up much more quickly now. Yesterday he was playing with the mop. I told him what it was, gave him the word. He instantly got it. Most hearing kids may learn huge portions of their language through osmosis, through hearing the spoken words all day. We may take for granted what they do and don't understand. Well, Josh knows all about the mop now. Maybe that will be his next obsession? Fine with me. Some kids might like cars, Josh likes to clean. Again, I wonder how long that will last...

Ooh! That brings me to the same point I keep bringing up. Read to the kids. Language, language, language, get it to them. I'm VERY tired most days, that's just life. But I've been making a much stronger effort to read to Josh and Chris most days when they're home. Chris could sit forever listening to books. Josh actually sits quite a long time, now, too.

Okay, that's enough for now. My head actually hurts, like a little, throbbing migraine. I sure hope I can catch some more sleep. Please, Mr. Sandman?????? I have a long couple of days ahead of me with the boys. PLEASE let me get some more sleep? I feel better getting all of this down in black and white. Maybe I won't stay awake thinking about it now, kind of exhausted the topic. Exhausted, yes, I am. Need sleep...

Time to get up!

2006-02-16T04:12:00.000-08:00

Well, almost. Joshua had a rough night of sleep, so I'm letting him sleep in until the last minute before I have to rip him out of bed and we all head out.

BUT, he has been vocalizing like crazy! Trying, anyway, and getting more adventurous, too. Last night we started a new "song". I sing (you can't hear the tune, just pick one out), "Mama, mama, mama, Bye bye," then he copies it. When he was comfy with that I changed it to Mommy instead of Mama, then changed it to Chris, fish, moon, we tried a bunch of things. Some sounds are still hard for him, but we spent a bit of time working with "n" yesterday, and he's really trying now!

Another cool note. He's really into his numbers. He's trying to count all the time. AND recognizing letters, too. We have a signing alphabet poster hanging up downstairs. He tries the letters in sign (I'm THRILLED he's getting his alphabet now, any way he can), but he'll also sit with me and try to vocalize them, too. This is EXACTLY how I started Matt with his vocalizations. First he felt very comfortable with the concept of the alphabet, then I tried to get him to voice the letter names. I'm a huge believer in reading, and I think this is key to why Matt is doing so well with his reading now. His spelling needs some work, but he's in second grade, he has time. I'm just tickled pink that Josh is showing a good interest in numbers and letters now, too. And as his comfort grows, so does his communication.

Today I'm going to pick up the Leap Frog letter thingy that goes on the fridge, makes the letter sounds. I visited a friend who had these. Josh loved the single letter one, Chris loved the one with three letter, capital and small. I think Leap Frog is the easiest to understand "mechanical" speaking toy, too.

Okay, time to wake up the little bear. Will have chocolate milk and CI in hand. If he's cranky, I'll shove the chocolate milk his way and move on with changing him. Here we go!

Baby Moon

2006-02-14T03:10:00.000-08:00

Joshua is finally USING his language! Yeah!

We were watching Teletubbies yesterday. I really hate the show, but Josh likes it. He actually "talks" with me about what's going on in the show, so it's a good time to work on his communication skills. I remember having to translate kid shows for Matthew, and for that reason I have a burning hatred for Barney. Too many songs, words, you name it! But I digress...

Back to Josh and the Teletubbies. At the beginning of the show a sun comes up with a little baby's face in it, laughing. It shows up throughout the show, then the sun sets at the end of the show. Josh loves this, we call it the "Baby Sun". So yesterday, at the end of the show I said, "Josh, say Bye Bye to the Baby Sun." Josh says and signs, "Bye, bye, Baby Moon." Mom: "Bye, bye, Baby Sun." Josh laughs and says, "Baby Moon!" Sounded more like "Bay-beh Moo", but you get the idea. He was messing around with me! I thought he was messing up, having trouble vocalizing "Sun", he can't do his "s" sound yet so avoids it. But he was clearly vocalizing (well, as best he can) and signing "moon". He was laughing his tail off when I finally caught on and joked with him about it. That little stinker! Cutie pie, but a stinker, too.

Josh is also counting and dancing with the Teletubby program. I used to hate this show with a passion, but am loving it through Josh's eyes and "ears". He absolutely LOVES to dance when he hears music on the show. His moves aren't much better than the Teletubbies', but he's so adorable when he gets up there and shakes his booty! :)

Ooh! Ooh! Josh's finally figuring out he can make different sounds with his tongue and started trying to say words beginning with "n" the right way! Yeah!!!!! He might be slower in progress, but it is SO COOL to watch as he learns new things! Really neat boost to MY morale, a payoff that encourages me to keep plugging away with him.

Matt, on the other hand, has no problems talking. Won't stop. Almost drove me insane yesterday. Thank GOD, literally, for the snow. I was THRILLED when the two older boys finally went to play in the back yard. Hours of peace and quiet with Josh, and to get things done around the house. Love the boys, but sometimes MY ears and the whole house need a break from their energy. (Big Mommy Grin here.)

Paperwork Mountain.

2006-02-13T07:11:00.000-08:00

I had plans for today. To be all organized and a cool mom. Then I remembered the boys' batteries are starting to last a shorter time, need to order new ones.

Oh, my gosh, the paperwork involved with that is overwhelming. First I have to re-enroll them in a certain program, involving paperwork through their docs and teachers. Fax that to someone, wait for it to be approved, fax the approval letter to another program, get more paperwork filled out by different docs and maybe educators again for that program, then order equipment.

I don't think we'll loose all of our battery power before then, but I'm sure I could borrow some if needed, until ours get ordered. I should have started this six months ago, when we first moved in here. But, Tired Mommy Me just gave up on paperwork for a while. For six months now. Well, time to get cracking! GRRRR...

I've been at this for hours this morning now, have left many messages on many phones. Will call again and leave more pleasant message, again, I'm sure.

For this reason, I recommend all parents in this kind of situation keep really, REALLY good records for all procedures, equipment, educational info, etc. I mean, you need to keep very meticulous records, multiple copies of certain docs on hand, and have good access to a fax machine.

This can be such a hassle and can take a lot of time, but the payoff is great. My boys can hear!!!!!

"Holy Snow, Batman!"

2006-02-12T02:42:00.000-08:00

That was Chris' response to seeing our blizzard results this morning. I put him back to bed.

We wrapped up all of the boys last night to do some sledding as a family. We're right next to a little park that has a small hill which is perfect for the boys.

Interesting note, though, when the boys' heads were covered with pull-on hats and hoods from their coats, not even the "hearing" son could actually hear us that well. More difficult for our CI boys. We will most definitely use their FM systems when we take them out later today. Oops! One is at school, one at home. Well, at least we'll have one to use.

Now which kid to use it with? The tiny receiver can be damaged, if say the boy wearing it is in a snow fight, rolling down the hill after being hit by another sledder (boo, hiss, neighbor boy!!!!!), or just when messing around. That would be Matt last night. He was wearing his uber-durable BWP under his jacket, in its pouch around his waist. He had absolutely no problems with that. But the FM receiver is a small attachment to the processor, more easily knocked or damaged. I'll have to talk to Matt about this. I need to start using the FM more regularly with Josh, too, though, so today might be a good opportunity to give it a try.

Back to the original thought. Could the hearing son hear me last night? Or was he blowing me off? Hmmmm.... He IS five now. It's a toss up. I couldn't tell you one way or the other. :)

Joshua and his 123's

2006-02-11T08:22:00.000-08:00

Okay, it's sometimes hard to know what Josh really DOES know, since his communication skills are delayed. But last night after we left our favorite pizza joint, walked to our car, we passed a bunch of numbered spaces. Josh ran off, in the parking lot, to space #3, signed "3" and tried to vocalize it! Then he continued up the line with more numbers. Yeah! He just turned three a couple of months ago, too. :)

His teacher says he's recognizing his letters, too. I think that's something he does better for her at school than he does at home. But it's so cool to see he's getting these things!

I talked to his speech teacher about oral motor exercises, again. He has lower muscle tone, and it's interesting to see his muscles finally get stronger. He couldn't take off his own shoes until his tummy muscles got stronger and he could bend over to reach the shoes. Just like he can't make his "O" sound properly until his mouth muscles strengthen more. His tongue is going side to side better, and down, but up is still hard. She gave me some ideas to work with him on this. I've heard him RARELY play the "lalalala" game with me. And last week when his teacher told him his groundhog painting was wet, she swears she hear him say, "Dry", with the "d", as did the sign for dry. He understands a lot, we just have to keep working to help him express what he knows, feels, hey wait! He seems to have fewer problems expressing what he wants. :)

Matthew my "Tester".

2006-02-07T16:51:00.000-08:00

I have a hard time figuring out if Josh's equipment is 100% up to par. If one of the wires is getting old and frazzled, his sound quality could be compromised. Matt has a much better descriptive vocabulary. I use him to test if something "funky" might be going on with Josh's headpiece and wires.

I was wondering why Josh has been responding differently lately, hooked Matt up to Josh's wire and headpiece (BWP). Matt told me right off the bat that Josh's was "softer, like one or two on the volume". Not a lot softer, just a little. No interference or anything, just a little softer.

So I went through my Box O' CI Stuff, and pulled out some new wires and Matt's older BTE headpiece (he's using the newer Auria headpiece with his CII BTE), which I knew was still working well. Boy do we have a lot of CI equipment! I need to organize it better. Two boys, four processors, an older set of hearing aids, batteries galore, different harnesses, FM system, more batteries, WOW! And to think I need to put in another order for equipment, too. Oh, boy.

Anyhoo, I put everything together and am psyched to have such a good tester to help me quickly and certainly figure out what's going on. Yeah, Matt!

I'm SO GLAD the batteries last so long, I don't have to order them very often. But I do need to order more equipment through insurance. More paperwork, yuck. ;P

"On Back."

2006-02-07T00:20:00.000-08:00

I remember a year ago when Josh was finally moving through his vestibular issues. Walking better, really starting to get around. That's when he seemed to be freed up to finally communicate more with us, on his own.

Fast forward a year, and he is now vocalizing when I verbally prompt him to, not needing touch so much to remind him. I am so thrilled! I'm wondering what the next year will bring. Now that his receptive language is getting so much better and he's vocalizing more, I really see the need for more oral therapy. I'll have to talk to his speech teacher, see what they're doing. And when we finally get into a developmental peds department here I'd love to see what else we can get, as a medical not educational issue, for insurance purposes.

But yesterday he really started getting me. I've been feeling like doo doo this past week, hard to move. Back pain, you name it. But when Josh asked to go downstairs, "Ah ba.." (for "On back"), you BET I gave him a piggy back down the stairs. He's been signing this, but I've also been encouraging him to say it. Yesterday he did it! All on his own! :) I find him vocalizing much more, when he's not falling over tired, and I am so thrilled! It's like something has finally clicked in his little noggin. Especially vocalizing the word, "NO!", but that's another story...

The boys are quiet...

2006-02-03T14:22:00.000-08:00

That is either a blessing or a warning. I will have to type quickly and then check on them. :)

Something I wanted to note. We started using closed captions for Matt's TV viewing, and his vocabulary and comprehension have greatly improved. I started off by watching a show with him, paused it (digital cable), then asked him about what was said. Since we started adding CC, I've done the same thing (w/o CC) and have found his comprehension much better. I think he just had to teach himself how to focus on what was said. How we speak things in class and therapy are much different than how things are said in the media. Much quicker there, more colloquial (sp?). I found that so true when I studied Russian. Give me a book or newspaper to read, not so bad. I would get very nervous when actually talking in Russian and listening to a speaker, but forget about listening to the radio or TV shows in Russian. It was much easier w/ a vocabulary list in front of me, helped me to "train my ear". Kind of like what we're doing with Matt, I guess.

Joshua, Joshua, Joshua. He is communicating much better now. I have to keep encouraging him to use his voice. I'm at a loss of what I could be doing at home, need to look back into the book, Listening for Littles, for some more ideas. Good program. But that kiddo spontaneously made a three word sentence (with signs) in class yesterday! He's been doing that at home, and much more. It's good to see he's doing that at school now, too.

I've been tired lately, had a little visit to the ER with more doc visits to follow. It's really hard to give much attention to the boys when I feel like I'm going to fall over, face forward. But the boys have all been very understanding. I'm working hard to get more order into this home so I can have more fun time with the boys. And for all the hours I already spend working with them, I feel absolutely no guilt when I have to take a break. I can see Joshua slip back a little when I'm not consistently working with him, but he'll get right back on track when I have the energy to keep up with him.

Okay now, PLEASE DELURK and leave a comment! I sure would love to hear what you think about my blog, our CI journey. Any suggestions or ideas for support would be greatly appreciated, too. :)

Joshua's babbling.

2006-01-30T06:00:00.000-08:00

Josh was babbling so much in the tub the other day, I got my camera out to tape him. Of course he stopped. When my disc was full and the camera turned off, of course Josh started babbling about everything again. SO I put in another disc, and finally caught a little more on tape. Really cool, too! It's seems like when we take his CI off for the tub, when he's not so busy listening it frees up his speech neurons to start firing. He was really chatty about everything he could see, touch, play with! Fortunately I put on his CI right after bath time and he was still chatty. But he and Chris did sit nicely with me for a book. Josh sat through all but the last page of the Gingerbread Man. He was on my lap looking at the book, not me. When I read, "Run, run as fast as you can!You can't catch me, I'm the Gingerbread Man!" Josh would sign and vocalize, "Ruh! Ruh! Ruh! Ruh!" He did that the next morning when we were crossing the street to church, signed and vocalized as he tried to run across the street. His vocalizing is coming much more freely now, very cool to watch happen.

And now to my next point. I have learned in the past, with Matt, that if you want a child who's not talking to START talking, bring him to church. At the most inappropriate time, the child will start a whole conversation about the lights, windows, candles, Jesus on the cross, you name it. So we sat there Sunday, really excited about Josh's chattiness, but trying to shut him up at the same time. Go figure. Cute, though. :)

Well, I need to go downstairs and read a book to the kids. My neck hurts, it's going to be slow day. Good for reading books.

Joshua has "no" down pat now.

2006-01-25T13:58:00.000-08:00

His teacher said he was doing GREAT at school yesterday! He has a buddy, Julia, and the two really interact well together, too. She commented on how well he has "yes" and "no" responses down. Man! Overnight I think he's perfected the "no" response! Isn't that typical for a three year old? No this no that, offer candy and it's "YES, NOW!" Josh is getting very selective in his eating, too. Picky, picky, picky. Chris went through this at about the same time. Chris knows better now, has to at least try what's put in front of him. I'm too tired to enforce that with Josh right now. He LOVES fruit and some veggies, not hogging down Snickers and M&Ms (except for therapy, but that's another post...), so we're okay for now.

The kids are fighting. Always fighting. Matt and Chris can't be separated, but they're always fighting/competing over one thing or another. A hint of things to come? Josh is getting involved, now, too. Chris was sitting on a stool in the library, Josh wanted it and pushed Chris off. Just like that, kind of took us all by surprise. Chris let him have the stool.

If there is one thing I would share with other CI parents it would be read, read, READ to your CI kid. I'm doing this with Josh, and it's helping his vocabulary grown. His receptive language is doing much better. When they tell me at school which words he recognized and which he didn't, I KNEW that the reading was paying off. The words he was familiar with were in the books we had read. The words he doesn't get yet I haven't shown him in books. This is true even with Matt. Although the kid is a typical seven year old and drives me nuts at times, I still have to sit and listen to him read. He gets tired and lazy and starts "mushing" his words together, I correct him. When he comes across words he doesn't know, I ask him about them and try to help him learn them. I think even parents of perfectly hearing kids should be doing this, too.

And along those lines, I'm tired. Not just of "therapy" with the boys, but just of being a mommy. You can read more about that at: www.chaotichome.blogspot.com, if you're so inclined. I'm working hard right now to do the best by my boys, but also to provide some sort of balance in the home, too. Tomorrow is the deadline to sign Sean up for full day Kindergarten, you bet I'm making sure the papers are in on time! Even if Josh is still two days a week next year, I think I'll be able to concentrate more and provide a better home environment for them, too.

Boy, things sure have come a long way since we were told we were infertile. No kidding. I don't think I'm a natural "Mommy" who thrives on time with the kids, but I'm working the best I can to give them the best opportunities possible. There's nothing in those cute books I bought when first preggers about deafness, cochlear implants, therapy and millions of doctor visits, sleepness nights of worry and even more days of screaming kids, but I love my boys. Wouldn't trade them for the world. :)

Great CI pictures.

2006-01-25T04:14:00.000-08:00

I just found some really great CI pictures (careful, there are some surgery ones there, too) by searching for "cochlear implant" at: http://images.google.com/ . There are links below the pictures to some really cool pages, too. :)

Yes and No.

2006-01-23T15:38:00.000-08:00

Big change in Josh this week. Instead of mostly parroting what we ask him/say to him (he repeats the last word), he is actually vocally answering Yes ("yeah" w/headshake and sign) or No ("mo" with headshake and sign) to questions.

Dad: "Josh, do you want to do laundry?"
Josh: "YEAH!" (with headshake and sign)
Dad: "Josh, do you want to go upstairs?"
Jsoh: "Mo." (No, with headshake and sign)

This might not seem too great to some folks, but a huge improvement in Josh's communication. Before if asked to do laundry, and I kid you not he is obsessed with doing laundry now, he would repeat with the sign for washer. Then it's still cool because he'd add "water", "wet" and "dry machine" (dryer) signs, sometimes vocalizing "wawa" for water. So he was talking about what was asked, which is cool. But now he's simply answering questions AND expanding on the communication. His receptive communication is improving nicely, and I'm very excited in his expressive gains, too!

Seriously, when I spend consistent time with him, reading books, talking, etc., it is just opening the chatter box inside of him and he is really clicking with vocalizing, etc. This is really exciting for us. Matt was just so quick with the post CI habilitation, I've been discouraged by Josh's slower progress. But on a positive note, and as encouragement to other families that may experience similar issues, I am REALLY happy to see good progress in Josh. He is a tougher cookie to work with, but days like today remind me how much we really are blessed. Even with all of the "therapy" and work that we've done with Josh, the cochlear implant has made communication much easier for him. While Josh can use sign, I feel like the world of sound is really opening to him, too.

Josh had his BTE on all night.

2006-01-23T05:46:00.000-08:00

Last night he absolutely had to have it on to fall asleep, he wanted to listen to music. Later I heard him wake up, really upset, he had his BTE in his hand. I assumed he wanted it off, quite the opposite, he wanted it back on. Must have fallen off at some point. So I put it back on. When I THOUGHT he was asleep I tried to take it off to store/recharge battery/give his little head a break. When I tried to pull it off, the earmold coming out must have woken him up. Man, was he upset! He basically told me to put it back on, so I did, and left it on the rest of the night. When he woke up he brought it to me, and I put on his BWP right away, for the day. I'm going to be working in the office today, the BWP is just easier to manage.

I hate to admit I don't want to be putting the BTE back on him all day when it falls off. I guess it doesn't fall off too much, really. But I've found a wig shop and need to stop in for some double sided tape, toupe tape I think. That might help a bit. That and I think he could learn to put it back on himself. His earmold is older, from his hearing aids. We could get him a newer skeleton mold (?). Matt likes that better. It's not like they need them to block out sound/feedback for their hearing aids anymore.

Joshua the Trooper.

2006-01-22T09:48:00.000-08:00

Josh has been a great little trooper. We had a huge promotion party for Daddy yesterday, and Josh had a blast. I had a "babysitter" for him so I could relax and visit with everyone and not wonder if he'd wandered off. The party literally spilled out of the house and into the street, thank God we had such good weather yesterday!

Back to Josh. His vocalizing has really clicked recently. He still has a far way to go with his expressive language, but it's really cool to see his new skills emerging. Once again there were a bunch of people who came yesterday and "forgot" Matt was deaf. He's doing so well! Had his first confession at church yesterday (I joked that's why we had such good weather). While Josh's progress has come slower, he really surprised me yesterday. He was trying to communicate with the babysitter, and he vocalize, w/o prompting, "Bye bye, Mama," when I would leave the room. Chris had to "interpret" for him with the babysitter, but he was trying to communicate with her on his own, and was comfortable with her. That really warmed my heart to see him so comfy w/someone other than Mommy. Especially in the total chaos of yesterday's party. He played very well yesterday, too. I don't sign with him much at all at home, but when I made sure he heard me (it was very loud here yesterday), he really understood what I was saying. That was great because usually when he gets overstimulated he kind of moves to a quiet place on his own. Heck, I wanted to do that all day yesterday, too! Well, Josh really made me proud. I feel much more comfortable leaving him with a babysitter now. Josh is very lucky to have great big brothers to look after him and help, too. :)

I've been looking at other schools for Josh, mostly because I want to be prepared in case anything happens with his current school. Not that I think or know anything will change, but it will have new leadership next year, and I'm the type that likes to be ready for change. We've had a lot of changes in the past, being prepared is my way of coping. Especially when looking out for my boys. We are using some sign with Josh now, but constantly pushing his oral and vocalizing skills, too. He's made amazing progress in the past year, but I'm still on the fence about an all oral program.

Okay, the boys are back from the park w/Daddy, I need to get moving. Josh is very much like me, craving peace and quiet. :)

Joshua had a great day yesterday.

2006-01-20T05:15:00.000-08:00

It was great to pick up Josh from school today and hear how well he did. He is progressing in his communication, albeit slowly. But it was also reassuring that Josh is relaxing enough at school to show them the same communication he does at home. I've learned it's one thing for me to see progress at home, it's another for him to show his teachers all he can do.

Something seems to have "clicked" for Josh, or is just now clicking, for his vocalization. I have to remember that just a year ago getting any expressive language out of Josh was very difficult, and now he is really moving along. This gets me excited about how he may be doing in another year. Matt did move much quicker in his progress, but I remember wondering if he'd ever "mainstream". Now I forget all the time that he's "deaf". He IS deaf, has just adjusted and is coping so well that it's not the first thing I think about when communicating with him any more.

I don't know if things will ever be so easy for Josh, but I get more hope every day. We are thankful for his CI, but also very mindful that we have to continue every day to help him improve his hearing and speech skills. Two boys, same family, same physical etiology, so very different in needs and abilities. They're my kids, but this still overwhelms me all the time.

Okay, real quick back to Josh's great day. I like the school he's at right now, very much. But the program director is stepping down at the end of this year. That scares me, because she's really wonderful at what she does. I'm sure they'll find someone else great to take the job, but I'm a little cautious. I've been looking at other options for Josh's schooling. It's good to know there's another option out there for him if we find the need to change.

Ugh, I'm just tired thinking about this. But I'm keeping my mind open to Josh's options. It will be interesting to see what happens.

Major Joshua and Daddy's Promotion

2006-01-19T02:26:00.000-08:00

Yeah! Daddy got a promotion! We were thrilled for Daddy, and the boys were excited about participating in the ceremony. Before the ceremony Joshua ran around with the old rank a little while. What a bunch of cuties I have! :)

Couldn't resist another picture of "My Guys"

2006-01-07T20:32:00.000-08:00

Sorry, I just like coming to the page and seeing a photo or two of My Guys. :)

Two very different CI boys in one family.

2006-01-07T20:26:00.000-08:00

Wow, I just reread my last post. It's unreal sometimes, how I can have two boys with the same etiology, but who have been so very different in their CI habilitation. Matt was implanted at 39 months with almost no speech at the time, and I remember he was doing amazingly well in therapy only months after implantation. Even in the same family, same physical etiology (Pendred syndrome w/Mondini and EVA), the boys each have their own needs, strengths and weaknesses. We are very thankful that they are both doing well with their CIs. Josh is going a slower at his progress than Matt did, but he is progressing. And he is loving his CI, too. Last night I took off his BTE at bedtime, he was furious and told me he wanted it back on. I had to take it off after he fell asleep. That's been happening at night much more frequently now, pretty cool.

Here's a funny note. Josh was wearing his BWP on Thursday and Friday. He seemed to understand us well, would respond appropriately to what we said to him. But we could tell he wasn't happy, didn't want to wear his CI as much as he usually does. Then his wire broke! HA! He had a loose wire from his processor to his headpiece! Once I corrected the problem, put the headpiece back on and turned the processor on, a HUGE SMILE came across his face. Like, "Yeah, Mom, that's what I've been trying to tell you!"

Here's another funny note. When I need to test a wire, headpiece, etc., it is so cool and helpful to have Matt around. I pulled a wire out of my "parts box", tons of parts between all four processors, FMs, etc., wasn't sure if it was a newer one or one I had taken off in the past. Hooked it up to try out with Matt first, and he gave it a thumbs up. He's getting much better now at describing sounds he hears, understands static interference, etc. What a cool kid! :)

Working on Joshua's vocalizing.

2006-01-07T19:49:00.000-08:00

Okay, I said Josh is getting better at his "o" sound. That's emerging, not consistent, yet. But it's exciting! Sometimes I get frustrated, working with him so much, but am thrilled when he hits milestones in progress, too. It's really neat to watch a new skill emerge, and then one day it's just in his everyday use.

I didn't keep a good journal when Matt was first going through all of this. I remember there were times when I thought he was doing so well, then he wouldn't talk for a week. Then BOOM, he's using two and three words together, just like that! It was almost as if he would fall back a little before making a big leap. Like he was processing his new skills before using them.

Josh is still using sign language, but his vocalization is coming along better now. Just to get regular use of language out of him is great. I remember a year ago when we were struggling to do that. It was if he had a mental block, could understand us, but couldn't get out what he wanted to say. Now he'll tell us what he wants, what he doesn't want, where things are, what's on TV, etc. And tonight he vocalized a couple of things on his own in two word groups, "Up plee (please)", and "Mama BO (go)!" I think he's said "Bye bye, Mama." A bunch of times, too. I'm kind of used to that now. Wa=want, op or bop=stop, his "ooo" and "oh" sounds are emerging stronger now.

This is why I need to keep journalling more faithfully. I'm seeing a pattern now. First Josh started using language with signing. As that grew comfortable for him, and we consistently worked with his vocalizing, his own oral language has developed more easily. I used to have to touch his chin just to get him to vocalize, now I don't have to do that as much, unless he's really tired.

Along those lines I picked up a book at the HEAR in NH workshop I went to a couple of months ago: Visual-Tactile-Motor Prompts for Speech, The Piper-Dobson Approach" I was able to spend a good 10-15 minutes speaking with one of the ladies who developed this system, too. I've been trying to practice some of the prompts at home with Josh, as he is learning to use specific sounds. We haven't been using it very long, but I've seen that it's helped Josh vocalize better. Here's an example. Josh can get a couple of sounds very easily now, like the "b" and "m" sounds. But let's say I want him to say his "p" better for "up up up" vs. "buh buh buh" like he used to say. I've been using the technique from the book, pages 6&7, "/p/-Place index finger just below pursed lips. Then 'pop' out." I do this when I say the "p" part of "up", and that just helped it click in Josh's mind, how to say the word better.

Lately we've been playing the "lalalalala" game, where I make a silly face while saying those sounds, mouth open a little more widely, pointing to my tongue touching the top of my mouth. When I make something silly, he relaxes and does a much better job imitating, and the work really becomes more fun for him.

Josh also does MUCH better when in a group, with his brothers in our case. Not a large group, but he likes to watch others then try to copy them. And, yes, as I've posted in the past, he does much, MUCH better when rewarded with a mini M&M. Let me tell you, I've been able to pull out a lot of great vocalization when rewarding him with small sweets. And when I do that, Matt and Chris absolutely have no problems helping with Josh's "therapy".

Josh's receptive language seems to be doing much better. He follows easy directions well, can answer "where" questions quicker than before. Now I'm working on "What's/Who's that?" He will tell me on his own what something is, or point out a picture on a page if I give him the word (and he knows the word), but I'm working him on answering the questions. Why am I doing this? Thanks to all of his great Early Intervention Teachers of the past, I have these great scales of what he should be doing at what age scales. Initially I found those hierarchy of skills very frustrating. Now I see them as a guideline on what to work on next.

So the work is going well. Josh is vocalizing much better with much less physical prompting. More spontaneously using language, two and three words, and vocalizing better, too. We still give him ProEFA, and I swear that has made a HUGE difference in his progress. Josh is a really cool little kid. He's come so far in the past year, I'm very excited to think about what the next years will hold for him. :)

We're back!

2006-01-07T11:12:00.000-08:00

Sorry for the lack of postings over the holidays. I fell down the stairs twice in ONE MORNING, December 22nd. Hurt myself a little worse than originally though I had. It literally hurt to sit at the computer, so I haven't done that often in the past weeks. Oh, well, doing better now. :)

Otherwise, the holidays have been GREAT! Santa brought some cool toys, we've had a lot of family time with the boys.

Matt's speech seems to be improving, he's doing better with his "S" sounds in words. We still have to tell him to SLOW DOWN his talking when he gets excited. Must be that Yankee blood in him.

Josh is really communicating better at home. He is vocalizing much more consistently, too. We really don't sign much with him at home, and I am constantly reminding him to use his voice. One cool development is that I'm hearing a much better "O" sound from him now. His muscle tone has always been on the lower side, but it seems like he is finally developing better muscle strength to compensate. And when I sit with all three boys for "therapy", he tries to vocalize words that he would have never tried in the past. Right number of syllables, much better vowel sounds. He is progressing, slowly but surely. With constant, continual conversation with us. Daddy has been home a lot, and this has helped a TON.

I'm tired, but had a lot of time to rest after the falls down the stairs. The kids burn me out a bit at times, but DH has been AMAZING with all the time he's spent with them on his vacation. My immediate goals with the boys really include regular time with them every day. It's almost as if I have to schedule that time, make it part of a routine, or I just forget to do it. Sometimes the boys really grate on my nerves, but I think this time home with Daddy around has been what we all have needed. Good fresh start to the New Year.

Well, I do have more to add, will do so at a later time. :)

Wee Sing for Christmas

2005-12-22T13:55:00.000-08:00

This image came from Amazon.com. It says on the site this item is not yet released, but I just bought it from TJ Maxx. Originally I bought it for Chris, who seems to love music and singing. It came with a CD and music book. We listened to the CD in the truck this while driving Josh to school, Chris sang with me a little. While looking at the book, though, I thought about how cool it would be for Matt to listen to the music with the words there in front of him, to help work on his auditory discrimination! I remember learning Russian, and it was VERY different to know the language and to be able to understand it in song. But the Wee Sing books are very well put together, with the words to the songs set up in an easy to follow manner. I'm going to give it a try with Matt, see what happens.

Oh, and when I picked up Josh from school today his teacher said it sounded like he was "trying to sing" with them earlier in the day. Yeah! I wonder if that was because we were singing with the music on the way to school? I'm going to keep this up with ALL of the boys. :)

G.I. Joshua

2005-12-21T01:55:00.000-08:00

A new military display just opened in our area. We went to the ribbon cutting ceremony with Chris and Josh. We LOVE the display. I used to volunteer at the National Infantry Museum at Fort Benning, GA, and would like to volunteer here, too (I need to call them back...). The were designed very well, just draw you into the "action". The kiosks are interactive with recorded audio and visual media, stories straight from those who lived through them.

While Hubby and I could hear the programming through the sound speaker above us, both boys (Chris hearing, Josh w/CI) found this difficult. It was very loud in the building, and the speaker sound came from way above the two little guys. Chris and Josh both liked using the hand held speakers when listening to the stories. Well, they listened as much as any 2 or 4 year old would. Josh did get the knack of it, though. In this picture he's trying to figure out why he can't hear the sound any more. He's trying to "make it work" with the helmet on. :)

Old Faithful

2005-12-21T01:39:00.000-08:00

Man, I could come up with some really corny remarks right now about Old Faithful and how amazingly faithful the boys' CIs have been. I'll spare you. :)

I remember asking Matt what Old Faithful sounded like when the water finally came out. At first everyone was cheering, then he said it sounded like the bathtub. Interesting. I loved it when he would describe the raindrops on the tent, too. These are things I would normally take for granted, but really enjoy hearing from his perspective now.

I was just thinking about why we had the boys wear their BWPs for the trip. Seriously, we would just put their on in the mornings and forget about them, go on with our day. Matt now wears his BWP at school and his BTE at home. I'm thinking with the new iConnect for his FM system, I may actually let him wear the BTE at school next year. Right now he claims to like having just one headpiece and wire, though, as inconspicuous as possible. His hair is much darker than when first used his CI. We need to change to darker wires and swap out the headpiece cover for brown, very easy to do. There are 11 kids in his school with CIs, 9 of them have Advanced Bionics products. He may change to his BTE because I think that's what the other kids wear, too. It's up to him, really.

Are we there yet (North Pole)? Picture...

2005-12-21T01:13:00.000-08:00

I finally uploaded our photos from last year, yeah! Having a digital camera is great, but not uploading is like not getting rolls of film developed. My main Christmas gift each year to grandparents is a Photo Book from Shutterfly. Their big sale just ended yesterday, hence my drive to get the pictures uploaded AND put into a book. Done!

And because of that I have more photos to post. My favorites are from our trip to Yellowstone. In the process of moving from WA to PA we drove across country with the boys in our truck, towing our car behind. That alone is enough to drive well meaning parents nuts, but it was amazing to see the countryside, too!

The boys mostly wore their BWPs for the trip. Keeping their batteries charged was easy. We either charged them in hotels or in the truck when we were driving. The boys were able to wear their CIs with one battery a day, worn into the night. We would turn their CIs off when they were asleep, put them back on in the morning and still had good use out of their battery from the day before. We brought along the extra attachment to use regular batteries if we ever ran low on the rechargeables, didn't need them, though.

Hope you enjoy the pics!

Summer Camps

2005-12-18T06:44:00.000-08:00

2006 CNI Cochlear Kids Camps: http://www.thecni.org/hearing/kidscamp2006.htm
A Program of the Colorado Neurological Institute's Center for Hearing
Introducing unique recreational and educational experiences where families of children with cochlear implants gather to have fun, learn and celebrate success!

John Tracy Clinic Summer Sessions: http://www.jtc.org/summersessions/index.php . Three-week Summer Sessions for children who are deaf and hard-of-hearing 2 through 5 years old and their families are offered each summer at the Los Angeles campus. The sessions include preschool, audiological services, parent classes and support groups, special events and a sibling program for brothers and sisters, grades 1st through 6th. I have heard rave reviews about this summer program, would like to attend some day. Hmmm... first I need to send in our monthly reports on time...

Aspen Camp School for the Deaf: http://www.acsd.org/index.htm . They have e-mailed me their updated schedule for 2006. I will post what I can, but will forward their complete e-mail with attachments to anyone who's interested. Their camp has been around for over 34 years, has a wide offering of classes and activities. Here is the schedule:

Adventure & Leadership Ages 14 -HS Sat. June 17 - Mon. July 3
TotallyTeam buildingg Ages 8-HS Sun. June 25 - Sat. July 1
Leaders-in-Training Ages 16-20 Mon. July 3 - Wed. July 19
Discovery & Fun Ages 8-12 Sat. July 8 - Wed. July 19
Exploration & Cooperation Ages 12-15 Sun. July 23 - Tue. Aug. 8
Friends & Fun Ages 8-12 Sun. July 30 - Sat. Aug. 5

The CCHAT Center San Diego sent me a "Save the Date" flyer that I can also forward. Here is the info from their flyer: 7th Annual San Diego Area Deaf and Hard of Hearing Family Camp, Camp Marston in Julian, California, May 26-28, 2006. For registration and information contact Dorri Hawkes at 760-634-7953 or dshawkes@cchatsd.org. They will have a camp website soon, too.

The Laurent Clerc National Deaf Education Center puts out a list late Feb/early March, I'll add what I can then.

Well, that's a start. I am trying to find more camps specific to CI kids, but will gather what I can and keep posting! :)

Stories from other users.

2005-12-18T03:08:00.000-08:00

There are links at the side of my page to stories from other users. I'm going to list some more here. Sometimes I correspond with parents who have the same concerns I did before my sons were implanted. It was a GREAT help for me when others shared their experiences, helped me to better understand what was going on, what great things could happen in the future.Okay, enough soapbox, here are the stories:

http://www.healthyhearing.com/library/testimonial_content.asp?testimonial_id=89
My Cochlear Implant Story, 5/23/2005
Story from a child's perspective. Great, open and honest story. From what I can tell, this boy was implanted in 5th grade, and would now be in 11th grade.

http://www.iloveellie.com/index.html
Wow! This site is really cool! Mom and daughter's CI experiences. Cute site.

http://wwwimage.cbsnews.com/stories/2004/11/24/
earlyshow/series/week_of_wishes/main657706.shtml
AB gives the gift of sound to a 16 year old girl, deaf since the age of 2.

Oops, just saw the time, need to get headed out to church. More later! And I have a little more info on camps to post, too.

A Cat with a Cochlear Implant?

2005-12-18T02:32:00.000-08:00

Just when you thought you've seen it all! :)

The paper with information about this cat can be found at: http://www.bme.jhu.edu/labs/ryugo/pdfs/kretzmer_etal_2004.pdf

Another user's experience with 120 channels.

2005-12-17T15:47:00.000-08:00

As a parent, I'm on a couple of forums full of adult CI users, and love hearing them share their experiences in ANY way they can. I think adults really describe their experiences better than my 3 and 7 year old CI users. Reading adults' stories helps me better understand what my boys may be going through with their hearing loss and CIs.'

That said, I've come across another great forum posting from a lady going through the AB 120 channel trials. Below I've pasted excerpts from her post on a forum re: her experiences. None of the testers are able to give their specifics, but I find what is said to be exciting.

"There is absolutely so much to understand about how the virtual technology works that I am not going to go into all of it. My excitement in the 120 channel software is not from what I am reading or even from what I want to believe or any hopes I might have...it is because I am using it and can actually realize first hand what kind of improvements are taking place for me and also my friend, Judy. We compare notes often.

We are both amazed in what is happening with music! Music with HiRes is fantastic as compared to the traditional strategies I have used. I have used three previous generation CI speech strategies and HiRes blew them away. My test scores with HiRes were very unexpected for a person with 31 years of nonstimulated deafness. I had been told by independent researchers that there was absolutely no other speech/sound strategy to date with any company that could possibly have given me back what HiRes has.

The new 120 channel software is another notch in the right direction...it has to be heard, and experienced to be believed! Michael Chorost explained it well in his "Wired" article...he explained how much his pitch discrimination had improved with the virtual technology. I know what he means!! Did you read it? Here is the link if you are interested. My experiences with music are similar to what Michael is experiencing and what Judy is getting. Michael's experience with speech is not similar to mine. I have not noticed any differences with speech and he has...but that just goes to show how different we all are and as with anything else...it will be a personal journey._http://www.wired.com/wired/archive/13.11/bolero.html?pg=1&topic=bolero&topic_

With HiRes no sounds are dropped out of the signal, because all sounds are important. Since everyday sounds like speech, environmental sounds, and music have many different pitches and components to them, HiRes looks at the LEVEL of each of these components and stimulates the corresponding electrodes at the level relative to the strength of the signal. For instance if electrode #9 might have a very strong presence, electrode #4 might have a small presence and electrode #1 might have a medium presence etc. All of the electrodes are stimulated during each cycle, but at different levels, providing a full and complete picture. Nothing dropped out or sacrificed. With the 120 channels presented on 16 electrodes, the accuracy of the pitch presented will be improved because the same spectrum is divided into smaller parts (120 instead of 16). Combinations of electrode stimuli are used to present at the most accurate pitch and level for each component of the sound. Electrodes are the number of physical contacts that can stimulate, and channels are the number of pitch divisions that sound is divided into across the entire electrode array. More channels mean more sound detail....that much is simple and easy to understand.

I don't pretend to understand this in depth, I will leave that to the scientists and engineers. Working with the engineers at AB has made me realize how much I don't know....but I am very very very grateful and confident that they know what they are doing, I am living proof of that!
Deb H"

Deb also has a blog online, found at: http://debrah.blog.com/ .

We just saw Chronicles of Narnia!

2005-12-17T15:15:00.000-08:00

Amazing, amazing, amazing. Unbelievable! What a beautiful movie. The picture above is a Walt Disney Pictures photo by Phil Bray, found at http://www.sfgate.com/cgi-bin/object/article?f=/c/a/2005/12/09/DDG9QG4FJS1.DTL&o=0&type=movies .

And even more unreal is that we made it through the movie with all of the boys! No potty breaks, Josh "behaved". We wanted to bring Matt's FM system for him to maybe help him hear better, forgot. But we ended up sitting up front and Matt says he heard pretty well. Now he wants us to go buy the books. :)

Without giving too much away, I can say the opening battle scene was so beautiful, I almost cried.

What does this have to do with our "CI journey"? I don't know. We are very fortunate that we live with the boys' CIs, but they've become such a part of our lives we don't think about them so much any more. We just go to movies, pizza, book stores, sports, everything else like every other family. Sure we work on therapy, have to maintain the equipment. Two of our boys are deaf, but they sure love sound. Pretty cool.

Oh, here's a CI moment tonight, speaking of equipment. Matt was wearing his BTE. Usually we carry an extra battery "just in case" his battery dies, but this time we had forgotten the spare. Matt had the same battery on since early this morning, and it was quite an old battery. Good news is his battery didn't loose power until just after we left the theater at 5:30 p.m., yeah! A CI user's battery usage will differ according to the power needed to run a specific program, I think. We absolutely LOVE the power and reliability of the rechargeables, Matt seems to get quite a bit of time out of each one.

Much better explanation of 120 channels.

2005-12-17T02:37:00.000-08:00

Here is an amazing posting to the CIHear yahoo forum on this issue:

It takes an understanding of "current steering" technology, which is responsible for the creation of virtual channels, in order to understand how a cochlear implant can produce 120 channels. The unique ICCE electronic architecture of the AB devices dating back to 2001 can do this (so 120 will be immediately backward compatible to folks implanted as far back as 2001 when it comes out!). What's happening is with the simultaneous stimulation but different weighting of adjacent electrodes, the place of neural stimulation is shifted to a point in between the two electrodes. And it constitutes another "channel" because it is focusing the stimulation in a new place on the cochlea in attempt to allow the person to perceive this new place of stimulation as representing a different pitch percept. By varying the weighting of the stimulation on the adjacent electrodes(e.g. 90% on E-10 and 10% on E-11 versus 60% on E-10 and 40% on E-11),the focus of neural stimulation shifts and can create a new pitch percept. By "steering" the current between electrodes in this manner,120 (or more!) channels (or pitch percepts) can be created, all with the stimulation of the same 16 electrodes. Amazing, isn't it! So the strategy doesn;t need to "rove" as you call it, because all the electrodes are stimulated each time. The weighting of the electrode pairs and ultimately where that current is steered, is determined by the characteristics of the incoming sound. So this is potentially a much more precise method of stimulation, providing up to 120 different pitch percepts (if the person's neural survival enables that).

So the concept of 120 being a roving versus fixed strategy is really not an issue here. It's fixed in that all electrodes are stimulated every time, which is a good thing. It's "roving" if you will, because the focus of neural stimulation changes to different places in between the physical electrode contacts. That's different than your device, I know, because since your device does not stim all the electrodes each time, it has to rove up and down picking and choosing which of the 10 or 12 pitches you should hear.

So I wouldn't knock 120 channels if I were you! It's really quite a leap in cochlear implant technology! It's not unrealistic either--I am using it too and can experience the benefits first hand. And because my internal implant enables current steering, I was able to find out through a special software program used in the research studies, that I am able to perceive 284 different pitches! So 120 is a grand leap from 16 or 20, hopefully helping me to make better use of the neural survival I have. I really and truly hope some day you are able to experience something like this.

I have definitely noticed speech in noise improvements--I was at Orogami, a fairly new sushi bar here in Valencia California. All tiled floors and hard wood furniture and walls, tall ceilings--yes, the reverberation was awful! The place was packed, with two tables of 10 surrounding us on both sides where the people were laughing and shouting almost obnoxiously. This was a business dinner and we contemplated going somewhere else where it was quieter so we could readily talk. But I really wanted to try out this restaurant so I made us stay. Low and behold, I was able to carry on a business meeting with my boss in this crazy environment without difficulty! I true CI moment with 120, for sure!

Music at first when I started trying 120 (as part of the in-house clinical trial), sounded not too hot I have to admit. But after two weeks of use, I am hearing instrument combinations that I never knew existed--like the strings playing with the piano and the cymbals playing with the drums. 120 is allowing me to distinguish these for the first time. I mean, I love music with my HiRes programs anyway,but I am now (with 120) just starting to understand some of the many beautiful aspects of music that I have been missing.

It may not happen this way for everyone as we know everyone is unique in what they hear with their CI, but if there is additional potential existing in my auditory system, I sure want to do everything I can to try to make use of it and I really appreciate the fact that AB (and the other companies) don't stop at basic speech understanding in quiet but instead truly want to keep forging ahead to try to allow me to have better and better hearing to not only understand speech, but to enjoy a vast array of listening experiences. thank goodness for research and development!

Sandy
Audiologist and CI user with AB in the BEA

Pic of My Guys!

2005-12-16T13:01:00.000-08:00

These are "My Guys". I've had kind of a "blah" day, I just like to look at pics of my family to cheer me up sometimes. :)

Cranky Joshua, 120 channels

2005-12-16T05:31:00.000-08:00

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 BolÃ©ro
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

2005-12-14T02:23:00.000-08:00

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.

2005-12-07T04:26:00.000-08:00

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

2005-12-07T02:30:00.000-08:00

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

2005-12-05T13:06:00.000-08:00

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

2005-11-16T13:00:00.000-08:00

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.

2005-11-16T12:46:00.000-08:00

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...

Pic of Matthew and Daddy! :)

2005-11-16T12:41:00.000-08:00

Hello! Since our move we haven't taken too many pictures (and can't find the ones we took on vacation, oops!). But here is a recent shot of Matt with his Dad. Matt especially loves hanging out with his dad. Together they play a lot of chess, Halo on the XBox, take hikes and do really cool stuff with Matt's Wolf Scout group. I think the first entry in my blog is actually a photo of the three boys together. That was taken over a year ago! Boy, so much has changed in a year! :)

Matt's improved reading skills.

2005-11-15T16:44:00.000-08:00

At Matt's four year post CI checkup the audie suggested we have Matt read aloud to us and highlight the letters he's having problems with. This helps him to naturally speak slower when reading, and helps him concentrate on the letters he is not saying well. Mostly "s", but others, too. I can highlight most of the letters he needs in advance, and then I highlight more as he reads and we find areas he needs help with. This can lead him to reading in a choppy manner, so after he gets a sentence well, I may ask him to read it again a few times as I drag the pen along the line. His articulation improved, this helps his speed and flow. It's working, when we consistently work with him.

Josh slept horribly last night. I might be imagining things, but there is a strong weather front headed our way, big pressure changes. So this morning I was tired and forgot his vitamins and supplements. The ProEFA. Again, I'm sure he was just tired and I'm imagining things (read: I'M EXHAUSTED), but I could tell he was "off". He did communicate very well at school, in sign but not so much in speech. So much that the teacher and some of the staff were excited to tell me what he did. Pretty cool! I gave him his vitamins at home, and again, maybe I was imagining it, but it was like he was "waking up". I've noticed he "babbles" more at night, anyway, but he just started babbling away. Like a faucet with his own words flowing out. It's very strange, but in just two weeks we've seen so many little changes in him, unbelievable. Some of the changes are small, some bigger. But I'm Mommy, constantly have him under my personal microscope, and I've watched his communication finally blossom. :)

Well, if you haven't caught on, I'm very tired. With much to do, of course. Hubby has been a tremendous help lately, I'm so happy he has a job he can finally relax and enjoy. Makes things easier at home for all of us. He took the boys for a two mile "road march" tonight, pulled Josh in the wagon part way. Yeah! I'm betting they'll all sleep well tonight! Here's to hoping, anyway...

CNI Camps

2005-11-14T05:49:00.000-08:00

Hello, again! I KNOW I shouldn't be sitting here at the computer, AGAIN, this morning, but there's something else to share. Colorado Neurological Institute Center for Hearing has a great site for CI info: http://www.thecni.org/hearing/index.htm . We're trying to go to the John Tracy summer program, too, so at least we have some fun options this summer!

Along those lines, I have seen folks compile lists of summer camps/activities that would be great for CI kiddos. I'd love to see some things for this next year, will try to do some "research", see what's out there, and put together a little packet. I know there are some great folks reading my blog, if you have any ideas, send them my way. Thanks! :)

John Tracy Clinic Online

2005-11-14T05:12:00.000-08:00

I think I've posted about this in the past, but I'm excited to share info about the John Tracy Clinic (http://www.jtc.org/) and what it has to offer. Here is some info from their site:

"The John Tracy Clinic MissionJohn Tracy Clinic is a private, non-profit education center founded by Louise Treadwell Tracy in 1942. Its mission is to offer hope, guidance and encouragement to families of infants and preschool children with hearing losses by providing free, parent-centered services worldwide. The Clinic has over 60 years of expertise in the spoken language option.

Worldwide Family ServicesParent Distance Education / Correspondence Courses and Summer Sessions for families of young deaf children ages birth to 5 years. A special course is available for parents of preschool deaf-blind children.

Local Family ServicesYear-round, parent-centered education programs for newborns, toddlers and preschool children who are deaf and hard of hearing. Free comprehensive pediatric audiological testing, counseling and evaluation emphasizing early diagnosis and intervention.

Professional EducationDeaf Education Master's and Credential Program, offered in partnership with the University of San Diego. Available in two options: 1) one year at JTC for full-time graduate students or 2) two-years online for working teachers. Both options include two summer residencies at the John Tracy Clinic campus in Los Angeles."

Although we use sign at times with Josh, I am working very hard to help him progress in his listening and speaking abilities. I signed up for this course a week or so ago, FINALLY downloaded the first section just now. Things haven't been too organized around here, but we're getting things moving now! We're also very interested in their summer camp, may attend this summer. It's been a little disheartening to see Josh struggle more with speech than Matt did, but he's coming along. :) It's hard to describe until you've seen it, but just this last week with him on ProEFA has given us more hope for his progress than anything else so far.

Well, I would encourage anyone with deaf/hoh children to look into John Tracy's correspondence courses. They are free, been around for a long time, and have helped many folks already. Our most recent course is printing right now (just bought more printer paper, yeah!), and I already have a binder set up to keep things straight. Now to settle this in our daily routines...

ProEFA

2005-11-14T05:04:00.000-08:00

I've been giving the boys Nordic Naturals DHA for kids, but finally ordered the ProEFA for Josh. Immediate difference! Even his teachers noticed at school. Not just with his approximations, but all attempts at language have greatly improved. And his physical skills, I think his balance is even better!

I can't stay on long right now, but haven't posted in a bit and wanted to get this update out. No kidding, we really have noticed that much of a difference in Josh since starting him on the ProEFA. Hubby and I ask each other, "Did you see/hear him do that? Is that just weird? It's like a switch was just flipped and he's just doing things!" We were like that all last week. We noticed a difference just with the DHA, and when he's off it he almost "reverts". Now with the ProEFA we're just in a bit of shock. In a good way.

I don't sell the stuff, but you can read about it at: http://www.shop-in-service.com/diet.htm . I think this site is run by the Cherub Foundation, really cool stuff. We feel blessed that this has helped our son.

Comfortable with sound and without.

2005-11-02T06:11:00.000-08:00

There was a very interesting discussion on one of Yahoo groups that I'm in. I've copied my own response below:

Wow! This is an interesting topic. I don't think it's a judgemental one at all, but rather thought provoking. I also agree 100% that my son needs to be comfortable w/o sound at times, too, and he is. He copes very well when he is forced to be w/o his processor (I'm talking about the oldest boy, Matt).

Now, I absolutely did not set out to teach him this. He has learned it on his own. When his implant was activated and the sound scared him atfirst, I told everyone in no uncertain terms that the CI would stay on. I would allow the volume to be turned lower, only to be gradually brrought back up. But the CI would stay on. Both of my boys wear their CIs when they fall asleep at night, I go in and take them off and recharge the batteries while they are sleeping. We've never had to take them off in the rain, either, never had any problems with that. And call me a mean mommy, but when all of us were stuck travelling across country in a truck, the littlest one screaming at times, Matt wanted to take off his CI so he didn't have to hear the screams. I made him put the CI right back on, and told him if he wanted to hear, he had to hear the screams, too. Also adding that I sure as heck wish I had the option to take my CI off, too, but of course I don't have one. :)

But his comfort and self confidence became evident when his battery "died" when we were at dinner at DH's boss' house. I think he grabbed the wrong battery, one that wasn't fully charged. Since his batteries last all day and into the night, we've forgotten to carry spares, not needing them in the past. Well, Matt was without sound, but continued to play with the other kids just the same. We weren't close enough to run home and get him another battery. He could have stolen Josh's, leaving him without sound, but said he was fine w/o it. DH's boss' wife was just amazed that Matt was doing so well even w/o a working battery. That he really was comfortable playing with the other kids, not self conscious at all. It didn't even phase me until that point that he would do anything different.

Now Matt is invited to a swimming party where he won't be wearing his processor. It's a drop off party, but I've asked the mom if I could stay to help with Matt if he needs it. Even if Matt's processor were "splashproof", I don't think I'd let him wear it to the party. I know my boy, and the other kiddos that will be there. I would be worried about even finding the processor in the pool after they went through a round of dunking each other. That's just their reality. We moms don't like it, try to stop it, but can't control those 7-8 year olds every second. But the kids know Matt can't hear without it, Matt is fine with that, and he's told me he's not worried in the least, wants to go to the party with his friends. He is comfortable with himself and coping when he can't have his CI on all the time.

The CI is great, but it's not a cure for his deafness. I'm glad he can cope without it those rare times when he is w/o it. There's no way I could cope without my glasses, I'm practically blind without them. Maybe I could get through a day, without driving. But it would be difficult. Anyway, that's what I get from the discussion about "comfortable with sound and without". Very interesting topic! :)

--Karin, mom to the Bionic Boys
www.bionicboys.blogspot.com
BEA Volunteer

> I agree one hundred percent. There will always be
> times when our children are without sound, and they
> need to be comfortable in silence as well as in sound.
> There are times when I wish I could turn off MY CI,
> but I don't have one! :)

Very small hooray!

2005-11-01T14:49:00.000-08:00

I can't remember what the word was, but Josh let me manipulate his mouth a little while he was vocalizing, to help him properly make his "oh" sound! He let me do this a few times, and I think I saw some wheels moving in his head. After I was done with him, he tried it a little on his own, but didn't quite get there. He was a little closer, but this will take some time. How exciting! I'm really glad he lets me help him, oral motor stuff. It's like walking, I think he can do this, but it's going to take time to convince his noggin that he can do it. I knew he could walk when he was ready, but it took a week with a walker for his brain to figure out he could do it on his own. And he was so cute with that little walker!

He used a lot of language today, on his own. To tell me what he saw, and what he heard, too! When a motorcycle went by us in the park he looked at me confused and signed "LOUD". I signed and said, "Yes, the motorcycle was loud!" He signed and tried to vocalize "loud" again, actually tried to say the word. Good progress.

He's using his language to label things well, but he's also starting to tell me what other people are doing, how they feel. He consistently uses happy and sad when another boy is smiling or crying. Cool that he identifies these.

I'm signing with him, but also working so hard to help him vocalize, too. I find that when he is comfortable with the language, the speech follows much more easily. And I'm sure was more patient with me working a little with his oral motor skills because we were outside in the park relaxing vs. doing "therapy" at home. When he's relaxed and having fun, communication comes much easier.

OH! He was waving and saying "Bye!" to everyone, without any prompting! When a boy would get off the climbing toy, he would wave and say, "Bye bye!", and when the boy got back on he would wave and say, "Hi!", more like, "Hah!" But this took no prompting from me whatsoever, it came straight from him. And when we left the park he waved and said bye to the park sign, too.

As a mom who is totally involved with all of her children, I get very frustrated at times. I feel chained to the home, to the kids, like I have no life of my own whatsoever. I am a full time unlicensed therapist for my boys, and this has been going on for years. I hit a rough spot yesterday where I felt so burned out I just wanted to cry for hours. My husband asked me if I'd want to do anything else, and to be honest, I don't know what else to do. This has been my life for a while now, it's just become a part of me.

Fortunately, I have always loved books and find good escape in them, even if for a few pages at a time. That and Law and Order. I used to like gardening more, but that's hard to do when my three boys are running around the neighborhood like crazy men. I look forward to Josh being in school full time.

But when I am burned out, Josh always seems to pull something new out of his hat. Like letting me help him with his "oh" sound, and saying "Bye bye" to the kids and park sign all on his own. He is one cute kiddo!

The new AB iConnect!

2005-10-31T05:23:00.000-08:00

From AB's website (http://www.bionicear.com/products/auria_earhooks.asp):

"AuriaÂ® iConnectTM Adapter Your cable-free connector to miniaturized FM receivers. The iConnectTM Adapter provides cable-free access to the Phonak MicroLink MLxS, the most common advanced miniaturized FM receiver used in schools. With a separate power source, the device is designed to provide reliable FM reception without compromising regular power consumption.
*The Auria iConnect adapter is currently approved for US shipment only."

From my personal observations: YEAH! HOW COOL!

Okay, a little more personal, maybe. When I was at the workshop in NH (ref: two posts back), I was able to exhibit AB's new iConnect adapter for the Auria processor. My table was right next to the Phonak exhibit, so I was able to get some input from their rep, too. I will be the first to tell you that I think Matt is able to mainstream in school so easily because of his CI, but also in great part to his Phonak FM system. The FM has made life easier on the teachers, too. The teacher has to wear a transmitter, and Matt plugs his wireless, tiny receiver into his BWP. I can't imagine how much easier it would be if he could plug it, with no additional wires, into his BTE processor!

The iConnect is very new, and I don't think a version has been released for the CII BTE processor. I'll have to call and see if it will be, when, etc. BUT, Josh has an Auria, doesn't use it with his FM much right now. I'm wondering if I could havetheirr BTEs switched and reprogrammed? I don't know if it's possible, but if it is I'll go ahead and beg insurance to get it for him. Heck, I'd buy it out of pocket if I had to!

One feature I absolutely LOVE about the iConnect (other than it is wireless and oh so small), is that it uses its own battery power. I believe the battery has been tested to last 20-30 hours, but I'll have to check my paperwork on that. This means that it doesn't drain battery power and life from the BTE, a big plus. AB has really put a lot of work into their batteries, one of their strong selling points. They last a long time during the day, and are rechargeable and can last through years of recharging (our own experience). The new adapter uses disposablee batteries, but still lasts a long time per battery, not taking anything away from the BTE power. I'm not an engineer, but this is pretty good news to me.

I would like to get Matt a new processor all together, but am waiting for AB's 120 channel processor to be released. It's going to be a while before it comes out to the general public (testing, FDA approval, etc.), but I've spoken with an adult who is testing it (Aug. 28, 2005, post at: http://debrah.blog.com/) and she says it's so good that if insurance doesn't pay for it, I should just charge new ones on our credit cards, get them for the boys. If there's that much of a potential increase in hearing input for the boys, it is well worth the wait. And I don't think I'll have any problems justifying the upgrade to insurance, either. The boys are doing very well with the HiRes programming, but could do even better with the 120 channels. Yeah for progress and great technology!

Joshua's progress, CI kids with LDs

2005-10-31T05:01:00.000-08:00

Hmmm... I seem to focus a lot on Josh. We've recently identified issues we need to work on with Matt's speech and comprehension, but I think that will be easy enough. But Joshua, Joshua, Joshua. What to do?

Can't tell you how thrilled I was to be at the workshop in NH last Friday (ref: last post). They hit the nail on the head: HI issues vs. LD issues. I think Josh's delays are due in great part to his deafness and inner ear malformations (esp. balance/vestibular problems), but even without that I think he'd be prone to motor processing delays and other problems. At the workshop I learned symptoms of delays due to Hearing Impairment, and those related to Learning Disabilities. Sometimes they're so similar that a teacher/evaluator not familiar with both can easily misidentify problems. That goes for well intentioned friends and family as well.

Josh had four therapists in WA, each coming at him from a different background and point of view, and I think each would give him a different "diagnosis". I trusted the input from two on his LD issues more than the others, mostly because I felt I could trust their experience more, hence their opinions. Very confusing for a mommy at times. And these therapists each only saw him for an hour a week! Even though Josh had his therapies over a good deal of time, I don't know if any of them quite got a good picture of his true weaknesses and abilities. Well, the two I trusted were much closer, anyway.

I'm happier and more comfortable now that his teachers see him two full days a week. With their experience I think we'll better be able to figure out where Josh's strengths and weaknesses lie, and how best to help him. I'm hoping he can stay in the program he's currently in, but am open to looking for options if he needs them. I was afraid that because he may have learning disabilities that he may not be appropriate for his current schooling. Then a teacher (not his) pointed out that many kids in the programs there have LDs separate of their HI, too. So far I'm very thankful that even though Josh may have some hurdles to overcome, he seems cognitively and socially able to handle his schooling.

Note about well meaning friends and family. I am much happier when they ask me about my boys, how they are doing, and truly listen. I've heard everything through the years, not much shocks me. But as well meaning as the friends and family may be, many times they are way off base with their observations and opinions. This weekend I was truly blessed to spend sometime with a sister-in-law who really talked with me about the boys. She is a very intelligent, caring lady, and it was a total joy to not just talk about all three of them, but to answer her questions, too. Many people are just afraid to talk/ask questions, form opinions on their own with very little real knowledge of the boys/issues. I don't know about all parents of disabled kiddos, but I'm one of the most open parents, and love opportunities to educate people about deaf/hoh/ld issues. I think the topic scares people sometimes, like they are afraid to ask thinking it may hurt me to answer. No, not really. Maybe in the beginning, but this has been my life for years, and now my passion to find ways to best help my boys. Sometimes a parent become their own children's specialist. I have a BS in Biology, but a self acquired Masters in CI Mommy Studies. :)

HEAR in New Hampshire Workshop, My Helper.

2005-10-31T03:06:00.000-08:00

HEAR in New Hampshire (http://www.hearinnh.org/index.html) runs an auditory-oral program for children with a hearing loss. Last Friday I was fortunate enough to volunteer at the Advanced Bionics booth for HEAR's workshop, "Hearing Loss and Learning Disabilities". I LOVE going to events such as this one, not only to share info about AB's cochlear implant products, but also to learn from the events sponsors, attendees, and other exhibitors. It was a wonderful event!

I was there first and foremost to share information about Advanced Bionic's cochlear implant products. Of course, I was meeting the attendees, finding their specialty/need, and sharing a host of great material with them about cochlear implants. AB has great material for educators, very cute books for classrooms, and movies for children and adults. There was something at our exhibit for everyone: the audiologists, speech paths, special ed directors, teachers, and parents at the workshop.

The rep from the Clarke School for the Deaf was the same great lady I had met at the workshop in Rhode Island last month, too! I had to leave early before the raffle drawing, and she was going to mail me my winnings, if I won anything but the rocking horse. We just don't need a rocking horse in this house. :) Well, it was the grand prize, and I won it! She kept it and gave it to her granddaughter for her 2nd birthday the following week. How cool! Neat lady, and a good school, too (http://www.clarkeschool.org/). I'm going to visit the branch near our home sometime in the near future, too. Sounds like they have a wonderful program.

Well, the neatest part of volunteering at the workshop was having Matthew with me to "help" at the Advanced Bionics booth. Hubby showed up with all three boys just as the workshop had it's first break. It was not only wonderful having my family see me at the AB booth, but it was even more special for the attendees and other exhibitors to meet my family. Matt and Josh both had on Advanced Bionics shirts, and Matt immediately got behind the table to talk to folks. He was also a great helper when supplies were running low, replenishing from the stock I had under the table. I think just having him there brought some folks to our table to ask questions, and gave me a personal connection to them when I was sharing materials.

And did I ever share materials! Some of the other exhibitors were laughing at me handing out info, but it was my goal to find the need and fill it. Sometimes people would "feel bad" for taking a video or disc, but I had to explain that's why I had them there, to share. And that they could get even more books, videos, etc. for their school or center at the web addy on back of the material: www.bionicear.com (http://www.bionicear.com/webform.asp), or by calling Customer Service at: 1 800-678-2575 ext. 2101.

Now, it may sound hokey to you, I stand there and hand out material, but I find the whole experience fascinating. AB has great products and information to share, but it's also great to see how the education system is learning and evolving. CIs have been around for some time now, but are now seen in the school systems more than ever before. When Matt was implanted, only four years ago, I saw and heard that many school districts just didn't know what to do with implanted children. The kids were treated just as if they had hearing aids, when in reality they had "brand new ears". This weekend I was thrilled to meet educators who were familiar with the cochlear implant, and thirsty to learn more that could help them reach and teach the implanted child. I hope this is a trend for the better that continues.

On a smaller scale, the workshop was specifically addressing challenges that may face a Hearing Impaired child and impact their learning, and how to identify, differentiate and address HI issues vs. Learning Disability issues. They talked about how some children are not only HI but have additional LDs that may affect their access to education. I have seen this in my own family, with my own boys. Because Matt is deaf with a CI, he faces certain challenges but seems to overcome them easily. Not so with Josh. I think he has some learning disabilities that make it harder for him to use what he learns. Fortunately, the more I learn about him and the more people we work with, it seems like his is pretty okay cognitively, but will need some more work getting over hurdles now and in the future. It's hard for me to understand this sometimes, I can't imagine how educators do this in the classroom and speech rooms! The good ones earn my greatest respect. :)

Okay, I need to wake up a couple of kids, get ready for school. Happy Halloween! I hope to write more later about Josh's progress (getting some better oral motor movement!) and AB's new iConnect (http://www.bionicear.com/products/auria_earhooks.asp), WAY COOL stuff! I may see if Matt can use Josh's Auria and the iConnect for his FM use at school. I don't know if it can be reprogrammed that way, if they can essentially switch BTEs and reprogram them, but he would absolutely LOVE using it in school. More later...

Ooh! Observations from visitors.

2005-10-27T12:46:00.000-07:00

We had some out of town visitors last night, folks we met for the first time. Before I get too "down" on what I need to do to help Matt's speech more, I have to tell you about our guests' observations. They were amazed! Now, these folks aren't pros, but it was neat to hear them talk to Matt, and then about him afterwards. The were shocked to learn he had no hearing and minimal speech at 39 months when implanted, and that he spoke so well now. Granted, he was shy and didn't speak much, but it was cool to see how new folks responded to Matt. :)

Matthew's 4 Yr. Post Activation Checkup

2005-10-27T12:30:00.000-07:00

Wow. He's doing pretty well, needed a little boost maybe in the low frequency range. We also noticed this with Josh, maybe because of the Mondini dysplasia?

The biggest eye opener came with his speech/auditory testing. I know Matt doesn't talk perfectly well. I think the tester said it was actually difficult to understand him when he speaks quickly, and that he may need work on his sylibants. She asked me what he does in speech and I answered, "I don't know." Then she told me how I could help with his sylibants, did I know what those were? "Nope." Boy, you'd think after four years with him I'd be doing better!

Funny, but he's been doing so well in our book that I have really been forgetting about working with his speech. For quite some time, now. This appointment was a good wake up call. I don't expect him to ever have "perfect" speech, but at least now I have a good gauge at where he's at, and where we need to keep moving with his progress. I was lucky to bump into his speech teacher today, and she and I had a good talk about this. She was wonderful at explaining exactly what they are doing in therapy, what the terms mean, and things I can do at home to help him. I've been so wrapped up in helping Josh, I just took Matt's speech for granted.

Well, I'm going to have him read to me nightly. The person we had an appointment with today recommended I highlight the sylibants in the books (we get them at thrift shops, cheap) to help Matt focus on them and improve his speech in that area. She said we naturally speak a little slower when reading aloud, that this can help him improve. Good idea! And she suggested I read to him, chapter book, no pics, and then ask him comprehension questions. No problem. I can do this with Chris there, too.

Wow, it's nice to finally settle in routines. The deployment and move took a lot out of us. I think we all suffered a little because of it. But I think we're also ready to dig in and work a little harder now. I don't even think I would have been capable to work more with Matt a year ago, glad I have the energy now. :) NEXT I have to teach Hubby what to do with Matt, too.

Ugh. Good eye opening experience. I love having three kids, but it is very difficult to give them each all of the energy and time I think they deserve. I have SO MUCH admiration for parents with more children. Some of my friends have said, "But you have the additional consideration of deaf/hoh issues." Well, kind of. I think every child, disabled or not, demands tons of energy and attention from parents. I am employed, I am my children's teacher. Wish I had a degree in parenting. I think those degrees take about 18+ years to earn? :)

OOH! OOH! Side note: When asking for directions to the parking garage, I bumped into Matt's CI surgeon! What a neat man, and how nice to see him again on Matt's four year CI activation anniversary. I'm glad we had the opportunity to see him, again! All of the folks at Matt's CI center are top notch. If we had to leave our old home, I'm glad we were able to come back here. :)

Joshua is learning his letters, yeah!

2005-10-24T14:06:00.000-07:00

I remember when Matt was finally diagnosed deaf, pre-CI, but not doing so well with his hearing aids, I wondered how in the heck I was going to teach him his ABC's. The only way I knew how was to sing the song. That doesn't help if you can't hear the song. When he was about 2.5 years old, I bought an ABC chart with signs as well as letters. He learned them ALL within a week! Not perfectly, but well on his way. He had the letter recognition and language skills built into him, and I believe this was a great strong point in his future education. He was not implanted until he was 39 months old, had very little usable hearing for a long time, but is doing VERY well right now in second grade, all oral education. It CAN be done.

Now enter Josh. He can hear, has a much more extensive hearing history than Matt did, but he's having a hard time actually speaking. I think that will come in his own time, with much good therapy. He can hear me sing the ABCs, recognizes the song a little, but can't sing back himself. I know, I know, I KNOW some folks would balk at the thought of teaching him the signs for the letters, but he's learning! Last Thursday I showed him the sign for C for his favorite book Corduroy, he also has the bear. On Friday he brought me the book and signed C, putting his C up to the same letter in the title! He recognized the letter! On Thursday his teacher introduced him to his written name and the letters, using sign. He is recognizing the J in his name, too! Not a pro yet, but it's a start.

Today I used a magnetic set of letters and a cookie sheet, and we went through the letters as he pulled them out. He VOCALIZED as best as he can as he signed them, too! He let me move his fingers to the right positions for the letters, and he let me help him a little with forming his mouth the right way for the letters. I'm very excited. He is NOT relying on the sign, but I think he is growing more comfortable with letters BECAUSE of the signs, and is also more comfortable using his speech, too. Way cool. And a week ago I didn't even think about teaching him the alphabet.

The alphabet sounds are what I used at home to put speech meaning to letters for Matt, too. We would go through the sign chart at least once at night, if not several times, vocalizing each letter as we signed it. It worked for Matt, I can only imagine it will help Josh, too. I've pulled out the alphabet charts I used with Matt, and taped them up in a couple places in the home.

I wish things would come easier for Josh sometimes. He is understanding more oral language every day. It would be so much nicer for him, though, if I could just wave a magic wand and he could talk perfectly. No such luck, but hard work ahead. But it really, REALLY helps to note the progress he makes, small steps as well as the big jumps. :)

BEA Volunteering.

2005-10-23T06:32:00.000-07:00

Whoo hoo! I don't only want to write about my cranky two year old CI kid, but am SO EXCITED that I will be going to an "event" at the end of the month as a Bionic Ear Association volunteer! This event is specifically geared toward teachers of the deaf, audiologists, special educators and parents from several states, about Hearing Loss and Learning Disabilities. I get to man the Advanced Bionics booth as an exhibitor, which sounds like work to some folks. But I am always excited to talk to people about the cochlear implant, how it can help children, and how educators can work with the implanted children. Advanced Bionics has a ton of material specifically geared toward educators and parents, and I absolutely LOVE sharing, too! Having two CI boys, one who's been in six different schools now (constantly moving army family), I know a little about the educational aspects of working with CI kiddos, too. Not as a subject matter expert like these folks, but as a mommy. :)

My oldest son, Matt, may be on hand with me at the booth, but that's not a given. We'll see how he's doing that day. First things first, focus on Advanced Bionics. Their material for educators is so great, introducing it to the audience is very easy. Matt has been with me to such a conference before. Most folks like seeing not only the implant in a display, but actually on a user, too. And I like spending the day with Matt doing stuff like this. He is a really cool kid!

The CI had been around for a while by the time Matt was implanted four years ago, but I think educators were just starting to see it more frequently in their classrooms. The school district we were in at that time just didn't seem to know what to do with implanted kids, how to reach them. Some didn't "get" the idea that these kids were hearing sound in a very different way for the first time in their lives. The educators I've met recently are much more open to the CI students, have seen the benefits good therapy can provide.

Matt is free to be in mainstream classes now, only using his FM for assistance. This is a small adjustment to the educator who wears the FM, but no other adjustments are needed. He doesn't need an interpreter, the teacher doesn't have to face him to make sure the sound gets to his CI, he doesn't have to sit in the front of the class. He DOES still go to speech therapy, though. I think more CI students like him in the system will help others see how a little work in the beginning (therapy, therapy, therapy, TC/oral/AVT/whatever) can really have great payoffs in the end. In the big picture, I think the work that goes into helping an implanted child can only alleviate stress on an overburdened educational system.

Well, those are my thoughts. I don't really get the chance at the conference to expound, that's not my job as a volunteer. But I'm excited that educators are exposed to CIs more now than ever before, and that AB has such good materials to assist them, too. Yeah! Sharing at functions like this really gets me excited. I've taught my boys that we aren't just telling people about their cochlear implants, we're "educating" them. Helping them understand and maybe change their perspective on the implant. Get them excited, too! :)

Rough night.

2005-10-23T06:27:00.000-07:00

Josh had a rough night again last night. I'm really starting to believe that tinnitus is bothering him, as when I woke up and went to him, I had ringing in my ears, too. As well as a splitting headache, stuffed up sinuses. Sudafed and motrin helped me. I gave him a small dose of children's Benadryl to help him go back to sleep. It didn't help until I also put his CI back on to let him listen to music. That REALLY seemed to calm him. It so happens the heater is finally kicking in, and I'm wondering if the dust or other allergies are bugging both of us. I'll maybe give him a little Children's Motrin/Cold medicine when he wakes up, too. I don't like giving him meds like this, but it really bothers me to see him so upset and restless at night. Poor guy.

On a good note, he is trying to vocalize so much more now! We actually had "conversations" last night while he was so cranky. He is such a cool trooper! :)

Oral Motor Skills and Foster Care.

2005-10-22T06:07:00.000-07:00

Seriously, Matt is four years post CI activation, and he's doing so well I don't even think about what he needs to do to improve. His speech is a bit off, like any normal Joe with a speech impediment. But we've been working on his "s" sounds, and he's doing much better. The more language he's exposed to, especially in his Spelling and Language Arts books, the more familiar he is with how words are actually spelled and spoken. I make him read aloud to me on a regular basis, and to his brothers at night. That helps a lot, too, keeps me clued in to where he may need help.

Then there's Josh. He's really vocalizing all the time now, so I find the need to focus on HOW he's vocalizing. Hubby says he doesn't care what it costs out of pocket, I need to look into PROMPT therapy for Josh. At least to get him evaluated, to see if it would help him. Josh's therapist at school is helping us with his oral motor skills, too. It's nice to have a good team, great support.

But I can't rely on how he does in school, I have to keep focused on helping him at home. Some days that's easier than others. Josh doesn't mind "working" on his speech when his other brothers do "therapy" with us, but he's getting a little more independent now, and stubborn. Most of the time he lets me touch his mouth area to get him to vocalize better, but not at all when he's tired. But as much as he gets frustrated, screeches and kicks at me at times, I'm stubborn, too, and hang in there with him. Maybe for him. I try to keep a balance, working with him toward progress, but not so much that he'll hate "therapy" and not let me near him. Some days I just want to bag everything and let him just skate with what skills he has. Not very nice of me, but that's how I feel at times. Very rarely, but like I said, some days are easier than others.

We've actually thought about putting our family in the ring to foster a deaf/hoh child in our area. We still need to make calls, inquire about the need around here. Well, I've already been told there's a need for such foster families. I don't think we're ready now to take in someone else, we still have to settle in our new home ourselves. I think if it weren't for our own sons' disabilities we'd have many more of our own children. That's not totally true, I really don't want to be pregnant again. I'm not shy about that, we've been through seven pregnancies with three boys full term. My body is just kaput with the thought of "trying again". And we were told we were infertile at one time! Ha!

But I like the idea of having another kid around, for the child's sake as well as for Josh's. I know we might have little say to pick and choose another child in the foster arena, but my ideal choice would be someone around Josh's age. Matt and Chris play so well together, I wish there were someone for Josh, too. He loves his gal friend at school, plays very well with her. It would be nice to have another little one here he could play with. We'll see... Right now we're just in the Considering Stage, inquiring about the details of foster care. It will be interesting to see how this pans out.

God knows (I mean that literally), we would be a good family for another deaf/hoh child. We've learned the ropes in our own lives, maybe we can share what we've learned with another boy or girl, too. :)

Rush Limbaugh.

2005-10-19T08:15:00.000-07:00

To those who know me well, it is no secret that I'd like to meet Rush Limbaugh someday. And not because of his show or political beliefs, but because of his openness with his hearing loss and implantation. I'll never forget sitting in the car and hearing him announce he had a hearing loss and was going deaf. I believe that was October 8th, 2001, and Matt's surgery was the next day. If I remember correctly, Rush was implanted 19th, and then it was announced late the following January that he had received an Advanced Bionics implant. That made it personally special for us, as that meant he had the same implant that Matt had in his head. I'm guessing Rush had the CII, not the 90K implant put in, anyway, not sure.
Here are some internet readings I've gathered about Rush and his hearing loss/implantation:

Transcript from show when he announced he was going deaf:
http://www.audiologyonline.com/news/displaynews.asp?news_id=330

Excerpts from his show:
http://www.rushlimbaugh.com/home/folder/jan_21_rush_talking_about_his_hearing.guest.html

Story as followed by New York Post:
http://www.radiotalk.org/news/limbaughdeaf.html

Commentary:
http://www.jewishworldreview.com/cols/fund101101.asp

I really would like to meet Rush someday, shake his hand and thank him for continuing his work through his hearing loss and CI recovery. :)

Been pretty quiet here lately.

2005-10-19T08:00:00.000-07:00

Well, boys are set in school, things have really calmed down.

Josh had his 18 month post CI checkup, he did fine with all frequencies except the low ones. We couldn't remap him yet because we didn't have his map from his old CI center yet. They had all the therapy notes, but not the map. They're not sure if they can boost the low frequency for him or not. He had full insertion of the electrode with his CI surgery, but because of the Mondini dysplasia he may not have great use in that specific range.

Receptively Josh's doing great, though. Well, for him. Better and better. And he's spontaneously signing and "saying" more every day. Yesterday at school his teacher said he spontaneously signed "today" for her when they were going over the calendar. That might not sound like much for some folks, but remember we're really trying to get him to use language on his own right now, and more than just labeling things. A big step for him. Today we were building Lincoln Log houses in the basement and he signed and vocalized "house" while we were doing it. Yes, this is labeling, too, but I was thrilled. House sounded more like "how", but it was great to hear, anyway. He is using sign and his voice throughout the day now. I should keep a journal of what he does in a day or two, and post it. I think I did that back at the old home, but that was more prompted language. I'd be interested to note what he's doing on his own now, too.

Matt is amazing. He's seven now, and becoming a bit pushy with friends. It's funny, they don't even look at him much like he's deaf, that's just a part of Matt. I find it very interesting, though, when I sit down and do his spelling homework with him. It gives me a very good insight into how he really hears and interprets words. He's in second grade, but doing third grade language arts/spelling work. It's a good fit. I'm thrilled to say he got 115% on his last spelling test, too! It may take him a little longer to learn the spelling sounds and rules, but he is doing great.

Sometimes it bothers me that Josh isn't progressing as quickly and easily as Matt has, but I think I'm finally accepting that it's okay. That acceptance takes a while, doesn't happen over night. It helps to see at least some forward progress for Josh. That keeps me motivated to help him more. But I'm also thrilled he's adjusted so well at his school. No problems with separation, he has an amazing teacher, and a little friend in his class, too. The allergy counts are down, and when he's not washed out tired (like last night), he's doing much better than during allergy season. I wish he could talk and tell me what's really going on with him sometimes, but I just work a little harder now at communicating with him on his level. Trying to "read" him better so I can help him, too.

Okay. Nothing major to report. I did find Matt's old communication book from school. It would be interesting to post some of those old notes. Pre and post CI. I would like to "interview" Matt again about his schooling now. That would be cool to put down, for his own reference later, too. I wanted to scan in photos of his "Scientist of the Week" presentation in his mainstream class, but I can find the scanner cord yet. Darn! More reason to finish unpacking the office. Well, more to come later!!! :)

Rebuilt Review.

2005-10-14T11:09:00.000-07:00

I'm finding this book fascinating. I was hooked in the very beginning when Michael Chorost described the moments he realized he was loosing his hearing. But he is also deeply philosophical about the cyborg aspect of implantation. We have jokingly called Matt a "cyborg" in the past, little did we know how accurate we were!

I tend to skim through the deep discussions a little quickly, but am more touched by his personal feelings of hearing loss/deafness, educational past, CI experiences, and interactions with his parents. I think this book is a Must Read not only for deaf adults who may be CI candidates, but for CI parents as well. I haven't even read half of Rebuilt yet, but I already feel like I have a better understanding of what my sons might be going through. Everyone's story will be different, of course.

There is "techy talk" and very personal insights in this book. It can be purchased at www.amazon.com. 23 customer reviews on that site gave it a 5 out of 5 star rating, too. I will probably buy copies now to give away for Christmas. Thank you, Michael Chorost, for putting your story to words!

To sign or not to sign?

2005-10-14T10:29:00.000-07:00

I've been talking with a very neat lady about whether kids should use sign language after implantation. I don't think there's any one perfect answer to this subject. I think type of post CI therapy should dependson the abilities of the child, as well as family choices and what kind of resources are available for rehab. There is no one best way to rehab the kiddos.

Up front I'll tell you that I chose the CI for my son and committed to helping him learn how to cope in the hearing world. He signed early on, but I also pushed him toward better listening and speech skills. Matt has/had excellent therapists and is doing very well right now. Just because we used sign language does not mean we ever gave up with his listening and speaking skills. Matt progressed in these areas very well, and quickly. Some kids are able to do that.

Josh, on the other hand, is progressing slower. We use sign language with him much more, and he uses it back. Just getting him to use language is a primary goal right now. But while using sign, I also prompt him to use his voice. ALL THE TIME. It took a while for his brain to figure out what it was supposed to tell the mouth and voice box to do, but he's doing much better now. Hours and hours and hours of therapy, and I'm happy to see him progress, however slowly.

A parent needs to be observant, willing to figure out what the child's needs are, and try to meet them to the best of their ability and resources. A CI is not a magical cure, it is a tool, a device which can give some deaf folks access to sound.

That said, I think many children could benefit from auditory/verbal therapy. I'm not a pro with this therapy, but here are some good websites to find info for those who may be interested:
http://www.auditory-verbal.org/default.asp ,
http://www.learningtolisten.org/ ,
http://www.avli.org/ ,
http://www.listen-up.org/h_books/av.htm .

There is a good description on various therapies, including incorporating sign language, at: http://clerccenter2.gallaudet.edu/KidsWorldDeafNet/e-docs/CI/ModuleM.html (excellent links).

I do not think there is any one best way to work with a child, and unfortunately some parents don't have great choices, have to "make do" with what's available to them. Then they learn how to work with the early intervention and school systems, and this can be very frustrating at times, too.

Matt did use sign language, and I don't think it has slowed him down at all. And even with Josh's delays, he is already figuring out that speech isn't so difficult, is using it more and more on his own every day. Progress will take a bit longer fr Josh, but I do not in any way think his sign language use is preventing him from access to the oral world. If anything, it's been a wonderful bridge for him, helping pull him into more consistent vocalization. Thanks to good teamwork between his therapists and one determined Mommy. :)

Well, I did re-up the link to Jsoh's pic. If you're interested, clink the link on the page, it's back there. He is SUCH a cutie pie!

Peaceful sleep.

2005-10-13T01:52:00.000-07:00

I'm not sure why Josh is now sleeping so well through the night. He was having a hard time before. Is it because the rain has washed away allergens outside? My hubby says people at work are having all sorts of problems with allergies--headaches, sinus problems, as well as ringing of the ears and balance issues. Imagine that for a little guy with malformed inner ears! Or maybe the very small amount of melatonin I give him at night is helping? My sleep cycles have been messed up as long as I can remember. Maybe it could help me, too.

But what I find most interesting is that Josh absolutely MUST listen to his music at night, while falling asleep. He was so cranky tired last night that it was difficult to get him in his PJs. When he saw his CI in my hand, he told me "No no no!", and covered his implant site with his hand. When I asked him if he wanted to listen to music, he jumped out of his bed, attempted to turn on the music himself, jumped back into bed and waited for me to hook him up! This used to work for Matt, too. Now all of my boys like to fall asleep listening to their music. Very precious.

In the beginning of this journey, when we first realized Matt was deaf, we wondered how many songs we had sung to him that he had NOT heard. How many times we had told him we loved him. Now I know he hears me. I'll tell Matt, "I love you." and he'll respond, "I love you too, mom." Something I think many other parents take for granted with their children. Josh tries to respond back, too. I think it will be a bit longer before I hear the actual words from him, "I love you, Mom," but he hears me now, and I find that amazing. A miracle. :)

I spent $60 for what?

2005-10-10T04:00:00.000-07:00

Last week, whether it was allergies, illness, vestibular or tinnitus problems, Josh was not sleeping through the night and it was driving us bonkers. He's doing much better now, and so are all of us! :) He isn't taking Benadryl now, but I have him on a very small amount of melatonin each night. I don't know if that's been the answer, but he is sleeping very well now and waking up very chatty.

And along those lines, he's vocalizing all the time now. It almost reminds me of times right before Matt would make a great leap in progress, he would just stop everything for about a week. We were worried that he was regressing, then all of a sudden he'd be talking! Then in sentences! I was very worried about Jsoh last week, but now he's doing even better. Not a huge jump in progress, but just vocalizing all the time, and actually telling me what's on TV!

Okay, now here's the $60 part. Last week I bought a toy that has a camera and a microphone. I imagined using it to put the image of Josh and me on TV while we practiced vocalizing. I thought this would be great feedback for him, and he does actually like it. Yeah! But he's two, and that only lasts so long. As soon as he put the microphone down and we were finished with "therapy", the OTHER TWO BOYS were dancing in front of the TV. Shaking their backsides on the big screen. ARGH! So, my good intentions may be justified, but silly me never saw the other half of the "picture". :)

Oops!

2005-10-08T11:38:00.000-07:00

Yeah, we have a new hard drive! But, DARN, because of this I lost the link to the photo of Josh. I will try to update and add more recent info.

I think Josh's allergies have been causing problems with his balance lately. Three times now, I feel like he's "regressing", it rains and poof, he wakes up "chatty"! Matt went through something like this, too, at about the same age. It's been driving us nutso, but I'm glad to see Josh running around and communicating so well now.

I tried voicing these concerns when it happened with Matt, and the implant doc did tell me that there has been discussion about a minor malformation in Mondini patients that causes problems with balance. Well, if so, hand me the Benadryl! :)

Pic of Joshua the Cutie Pie

2005-10-03T17:11:00.000-07:00

Cool! Even with my slow hard drive, I was able to figure out how to add a photo. It won't be as good as the first, but I wanted to show you a pic of Joshua since I've been talking about him so much. This photo was taken in June at one of the places he got therapy. Josh used to love to play with the set up they had in the waiting room. He'd pull a lever and figure out which part of the display would light up. This was where he had physical therapy, and where I first realized how much the PT and CI rehab really worked together. When Josh felt more comfortable with his physical abilities, he was finally able to better focus on his communication skills.

I hope this picture posts well. I'm finally setting up my home office and hope to have more pics to post in the near future. :)

Rebuilt by Michael Chorost.

2005-10-03T16:59:00.000-07:00

Okay, I have the book and I'm finally going to start reading it. I have two CI boys, but I can't tell you what it means to me to talk with and read about adult CI users' experiences. They can put their experiences into better words than my boys can. This helps me to more clearly understand what they may be going through, what they could be feeling through this whole CI process. I've heard very good things about the book, Rebuilt, can't wait to dig into it.

Here's the info from the inside cover flaps:

"Michael Chorost became a cyborg on October 1, 2001 (oh my gosh, the same nickname we had for Matt, implanted almost the same time, too!), the day his new ear was booted up. Born hard of hearing in 1964, he went completely deaf in his thirties. Rather than live in silence, he chose to have a computer surgically embedded in his skull to artificially restore his hearing.

This is the story of Chorost's journey--from deafness to hearing, from human to cyborg--and how it transformed him. The melding of silicon and flesh has long been the stuff of science fiction. But as Chorost reveals in this witty, poignant, and illuminating memoir, fantasy is now giving way to reality.

Chorost found his new body mystifyingly mechanical: kitchen magnets stuck to his head and he could plug himself directly into a CD player. His hearing was routinely upgraded with new software. All this forced him to confront complex questions about humans in the machine age: When the senses become programmable, can we trust what they tell us about the world? Will cochlear implants destroy the signing deaf community? And above all, are cyborgs still human?"

And then about Chorost:

"Michael Chorost has a B.A. from Brown University and a Ph.D. from the University of Texas at Austin. He lives in San Francisco, where he writes about science and consults on educational computing."

It also states that the jacket image is a CAT scan of the author's head, showing his implanted CI. Very, very interesting!!!!! I can't wait until my Matt is old enough to read the book for himself. Someday...

Signs of progress.

2005-10-03T16:48:00.000-07:00

Okay, I've told some folks that it really helps to keep a journal, to see how far your kids have really come with therapy, communication, speech, etc.

Sometimes I get so frustrated with Josh's "slow progress", that I loose sight of how much he's really done in the last year. Josh's CI was activated 5/04. At that time his balance was improving, but his muscle tone was weak and his motor planning skills were still developing. He didn't finally start walking until late that October, before he turned two in early December. He didn't start "meaningful vocalization" until the following February, I think. I knew he was recognizing sounds and words, but it was hard to show others when he didn't have the right ways to express what he understood.

Now were starting October again, and Josh is not only walking, he's running, jumping a bit, climbing up and down stairs better (when he's not too tired), and has just recently discovered his urge to climb. And he can vocalize on his own, unprompted. Appropriately. Different vowels for a word (ah ee for Daddy, Uh-oh), some consonants, and responds much, much better to what he hears, too. So he's made great progress, and I have to remember that.

Pretty cool. I don't know where he'd be without his CI right now. Or where I'd be without good guidance from all of the professionals we've met over the years. Or w/o the great support from friends, internet forums, etc. I'm just finally learning to be happy just where I am, plugging along with my boys. :)

Use what works.

2005-10-03T14:02:00.000-07:00

When Josh gets bored, unfocused, he falls into his own little world. Especially when tired. That means it can take a lot of my attention at times to keep him motivated, learning. Some times I have to just step back and let him do "his thing". I try to keep him focused on playing with something, but sometimes I just need a break, too.

Some days Josh will follow me around the house and communicate GREAT! Other days, like today, all of us are tired and want to be left alone. But I'm still committed to doing some type of therapy with him. I have found that he absolutely LOVES the outdoors. Even on his worst days he'll communicate better, relax and use his voice if we're doing something outside. That might not be so practical in a school setting, but it works at home. And he seems to focus on certain things, like the moon, but he gets relaxed enough outside that I can acknowledge the moon and then get him talking about the trees. Really cool!

I don't know if you can tell, but today is one of those days I've had to step back from him a little, take a breather, then almost dig in the trenches with him again. He's not my only focus, I have two other little boys I put a great amount of effort into, and a husband who for some reason thinks I'm supposed to be cooking for him every night. I don't remember that in the wedding vows. Let's just say that lately I've been trying out a few pizzarias in our new town.

Okay, back to what works. Josh does best when well rested. Makes sense, right? Well, Matt does his best school work in the quiet of the end of the day. He's been doing "school books" since before he was three. I used to LOVE the products at: http://www.learningadventures.com/ . I've used them with both Matt and Chris, deaf and hearing alike. Very well put together material. To this day Matt loves doing his "school books". The school provides plenty of them now, ha ha! I haven't been at their web site for a while now, just saw they have packages for younger kids, may have to look into that for the boys again.

But I've had to learn to use what works with each of the boys. One likes books, the other will do better hands on, outside. Matt likes to read and work at the end of the day, I have to put time aside each morning to spend with Josh before he gets too tired. Matt is very oral, Josh seems to need more tactile/visual input right now. I can really push Matt, always could, I have to be a little more creative with Josh.

They pay me in hugs, double on the weekends, triple on holidays. :)

Mommy Thoughts, and "I love you." :)

2005-10-02T18:33:00.000-07:00

Okay, I LOVE my boys. I'm working hard to do what's best for them. But sometimes they do drive me bonkers. I've been blessed with excellent hearing, but can't turn my volume or sensitivity down when their little voices are grating on my last nerve. BUT, I CAN USE EARPLUGS! Seriously. I have a blood pressure cuff to monitor my blood pressure, and I have actually noticed that when they boys are bugging me and I use the earplugs, my pressure actually stays lower! I can still hear the boys when they need something, and I keep a close eye on them at all times, but their cute little voices don't bother me as much when they're muffled by the plugs. Go figure. :)

While Josh's progress may be slow, it is a bonus to see him still progressing forward in his language development. He doesn't wear his CI to bed (Matt does at times), so I sign more with him then. Last night I signed "I love you." and he held his hand up and vocalized "I uh oo" back to me. Yeah! He is trying to use his voice much more now, and that's encouraging. Once he's more comfortable and consistent, I'll start picking on the more fine details.

Oh! And last night he was having a rough time so we took a little walk outside. We've been working on using two words together at a time, instead of just labeling things. So we had to say, "Night night tree." and "Bye bye light." at least 50 times each. But he was so excited! He would "Walk walk walk", spot another three and point to it and start squealing! And he spotted airplanes passing overhead and would point and vocalize bye bye. Pretty cool.

His language is coming along better now. He's understanding and identifying colors, red is his favorite. He is using two words together now, like "cat food/eat". He understands more words receptively, sentences, but I'm talking about him expressively, too.

Ooops, gotta go. Will finish later.