The Story Continues at the Town Home...

Yeah! The movers didn't take my computer away this weekend! They have to finish the packout by Monday, so it will eventually be packed. IF the house closes in time we may get a laptop. We'll see...

Not long after we arrived, we figured out that the Town Home State was exactly what The Doctor ordered for our family. I was told that there was a large deaf population in the immediate area. Folks everywhere seemed to know sign language. Instead of staring at that weird thing on my kiddo's head, they would come right out and ask, "When did your son get a cochlear implant?" WHAT? They knew what it was? I'm not kidding, that was really cool. They loved to ask Matt questions orally and see how he was doing, too.

I met one great lady at church, and her CI son. I also met another lady at the library, and she has since become one of my all time best friends! We were looking at some of the same books, and got to talking. And I don't know if I was surprised or not by then, but her son was also going to be in Matt's class, too! Never in a million years would I have thought we'd settle into "Hicksville" so smoothly. :)

Once the school year started, we finally sat everyone down for Matt's first IEP. And when I say everyone, there had to be at least 12 folks in that small meeting room! A very involved team, with every possible resource represented. I'll never forget their first question, "Mom, what are your long term goals for Matt?" I smiled and answered, "I want him to grow up happy and healthy, become independent and move out someday." Brief silence and then they all broke out laughing. I have a sense of humor, but this wasn't exactly meant as a joke. They explained that they wanted to know what my long term EDUCATIONAL goals were for Matt and how they could help him achieve those. My response, "I want you to help educate him so he can be happy, healthy, independent and move out someday." BIG GRIN! This time I meant it as a joke, but I still didn't have a clue what they were really wanted. They were very open, explained things well. After hearing so many scary IEP stories, I was pleasantly surprised at how well this one went.

Matt had to be tested by them, a new school system with good, thorough testing. I told them that the numbers on all these tests didn't really bother me as long as his progress kept moving forward. We did identify his strengths and weaknesses, and developed a plan of action.

But something stuck in the back of my mind. At that initial meeting there was a representative from the School for the Deaf. It was explained to me before the meeting that she would be there, even though I had already decided to not send Matt to that school. Professional courtesy, and they worked hard to make sure ALL options for Matt were presented at the meeting. Boy, am I ever glad they did that! At the very end of the meeting, the SFD rep mentioned a hearing peer program they were working on at the school, and the excellent speech therapist that would be on staff. HEARING PEER program at the School for the Deaf? Matt's old School for the Deaf was doing that, too, I think! How cool! Not what I expected from that school. I decided it couldn't hurt to check out the program.

Once Matt was settling in in his public school program, I took him to visit the SFD. Within seconds of entering the building, jut by watching Matt, I knew he had to go to that school. It reminded me of his old school, but had resources they could only dream about. It was so perfect inside, I had to hold back the tears. Matt was checking out the classroom and seemed as if he had found his "home". What an eye opening experience, I was SO GLAD I had opened my mind to all the options that available for Matt.

So we were at the Town Home, and life couldn't have been better! Matt was bused to the SFD in the morning. He was usually in a small group that was stronger in oral skills. His speech therapist ended up being a specialist of sorts in oral motor skills, helped him "find" his k, hard g and c sounds. The classes went on so many field trips it was amazing! After lunch Matt was bused to the public school half-day program for deaf/hoh kids. I chose to keep him here, too, as he had to get used to public school classes. Who knew where we'd end up next? AND I loved the speech pathologist there. She's the one who had over 10 years of experience with CI kids. As a matter of fact, we lived in the same town home building as her first CI student! That boy became sort of a hero for us, he was a perfect example of what we wanted for our son.

I became really good friends with yet another mom from Matt's class. Her daughter is hard of hearing, but has other medical issues as well. I grew to really respect and like this mom, too, because of her strength and coping skills with multiple kids. In reality, I liked her most because she made me feel like it was okay to feel bonkers when the kids drove you nuts. :)

Oh, I hated the thought of leaving the Town Home. But before we were to leave, I had another son, Joshua, my "little angel". Considering at one time we were thought to be infertile, we felt especially blessed to have yet another son. As you already know, Josh is deaf, too. I'll start his story with the next post. My boys are a perfect example of how each child is so unique, even in the same family.

One year post activation we move to the Town Home.

Okay, I know there's more to Matt's first year of activation, but we'll get back to that later. For now, I need to move forward with the story. Don't worry, my scatterbrained mind will pick up the pieces latter. :)

Matt's first year post CI activation went real well. He was three, progressing well, in an excellent all day school program, we were really starting to settle down in our "new" life. Pieces were falling into place. And then Hubby's job stepped in. They had seen fit to promote my husband and move the family. We were moving to the Town Home.

"WHAT THE HECK IS OVER THERE? You mean I have to drag my deaf kid to a new home for a stinkin' year while you go to school? Where will HE go to school? What kind of doctors do they have there?" I had many questions, we had no answers.

The army was looking out for our best interest, and sent us to to check out the area. See if it would meet my son's medical and educational needs. This is available through the Exceptional Family Member Program, and is approved on a case-by-case basis.

I was not thrilled with the first school system we visited. It lumped all of the children together, not disability specific. There was no real deaf ed for my son in that program, rather an itinerate deaf ed teacher that could visit the class on a regular basis. Whatever that meant. Matt was used to and benefiting from extensive speech and communication therapy, in a strongly oral TC program. I could not put him in an environment that I considered such a huge leap down from what he already had.

The schools did not allow children to bus from one district to another for a better program. They also discouraged against "school shopping" for the what we considered the best for our son. I think someone even told me that was considered "illegal". Huh? I told her that it would be a waste of my time and hers to live in her district, spend the whole year with me forcing her to provide appropriately for my son, and then have to move to another state. Not to mention a possible year of my son's education wasted. So we kept looking at other schools.

We looked at two other programs and an oral-only school. We finally settled on a public school, half-day, deaf/hoh program. Two factors were key for me at that time: Matt's teacher would be a man, possibly a good role model, and the speech pathologist had over ten years experience with habilitating CI children! Sold! I was warned against and absolutely under no circumstances would look at the state School for the Deaf in Olathe. At that time, anyway. More on that later...

We settled into the Town Home some time before school started, and were bored. We didn't know anyone! Here we were--transplanted from a fast paced locale where rude glares at my son's head were the norm, to Hicksville, USA, where strangers would not only tell you the time of day but then proceed on with their life stories! Who were these people? Again, WHAT IN THE HECK WERE WE DOING IN THE NEW TOWN HOME? Not much TO do. We spent a lot of time at the library.

Matt missed his old friends big time. It was so hard to take him away from a warm and comfortable place to "Quiet Country" with no friends but Mom, Dad and Baby Brother Christopher. So finally I decided to go to a church around the corner, just to meet some other people. Actually, I went to church only during Sunday School so Matt could meet some other kids.

I had checked into the church, stopped in earlier for a visit. The lady who ran Sunday School told me there was another boy there who was recently implanted, and would be in Matt's class. No way! She didn't think he'd be there that day, though, because he had been absent since his surgery. Maybe he was still healing? So we went to class. I decided to hang and translate for Matt, so he didn't feel so alone and lost w/o friends. He was one year post implant, understood quite a bit of vocabulary, but still needed some help to follow what was said.

So guess who walks in? The other Implanted Boy and his Mother!!!!! No kidding! I knew immediately who they were, jumped up and introduced myself. Her son was just implanted with the same implant Matt has, and was going to be activated the very next day! This was so cool, we were hopping up and down, practically shrieking! Crazy ladies, yes, but very excited to find our own little support group. Our sons were not only in the same Sunday School together, but they would be in the same class when the public school year started!

We were just talking about this when something even stranger happened. Someone else came to visit that church for the very first time, right then and there. He was coming to the class to drop off his daughter for HER first visit to Sunday School. Believe it or not, it was Matt's future school teacher! I am absolutely not kidding. We gals were so excited I think we freaked the poor guy out. But it was such an amazing morning! In a short time I had made a friend, my son had a peer and buddy, and I had met Matt's future school teacher!

I'll write more about the Town Home State later. It turned out to be an absolutely wonderful year. The folk were so nice it took me months to figure out that their kindness was genuine. I'm not saying people at our old place weren't as nice and kind, but the new place was a completely different world. A few of the ladies there became some of the best friends I've ever made, Matt ended up with top notch medical/CI care, and the schooling was better than I could have ever imagined. This was not what I had expected, but it's the something I still miss today. :)

And now a word from Matthew...

Mom: What do you like about your CI?
Matt: It helps me great because it helps me to hear. If I didn't have my CI I couldn't hear airplanes, the people talking to me, music at night, the water dripping on stuff. Drip drip drip.

Mom: Do you listen to the words on TV?
Matt: Yes. Sometimes it's kind of hard. Like when they talk fast. Or when Chris is yelling. I like to watch Teen Titans and Scooby Doo.

Mom: Do you like music?
Matt: Yes. I liked my music teacher at school. I bring an old music book to music class. Then at the end, when we have to go back to our classroom, she plays some music out of my old music book. I like any kind of instruments. I would like to play the guitar someday.

Mom: Do you like to yell at your brothers?
Matt: I like to yell at Chris sometimes. Sometimes Chris likes to yell at me.

Mom: Aren't you glad you have a CI and can HEAR Chris yelling at you?
Matt: I hate it when Chris yells at me!

Mom: What else do you NOT like to hear?
Matt: Josh screaming when he's mad. You screaming when YOU'RE mad. (he's smiling now)

Mom: Thanks a lot. :) How do you think your CI will help you later?
Matt: I hope that I have my CI forever because I like hearing.

Mom: How does your CI work?
Matt: The sound goes in here (microphone) down into the computer (processor), then back up inside my head. My CI helps me to hear.

Mom: Do you remember when you first got your CI?
Matt: Yeah. When I was three. I was scared of everything. I like hearing now.

Mom: Thanks, Matt.
Matt: Can I play games on the computer now?

Mom: Yeah, sure, Matt. ;)

Activated!

I had to read my last post to see where I left off. Activation Day. I am so glad I'm finally writing all of this down, because there's so much I'm forgetting! I think we did write some of it down, and I'm searching my hard drive for those files. If they're not on the hard drive, I think there's a printed copy somewhere, or a disc w/it on. I'll have to find it someday and share. For now I'll tell you what I remember.

I think someone told me environmental sounds can have fewer variables than speech, and that the ear learns to hear those simpler sounds first. Matt seemed to sense sound when the car was starting, when he walked near the dishwasher, when a helicopter was flying overhead (we lived on a tiny navy base, helicopters overhead were common). But one of the first things he seemed to enjoy hearing was his "piddle in the potty". :) He thought it was the funniest thing! It only took me a second to figure out why he was laughing. THEN he flushed the toilet and ran out of the room! He didn't like that sound at first.

Matt did have problems with tinnitus in the past, and I think he was a little frightened when he started hearing sounds with his CI. I remember him walking outside and immediately looking confused. He told me in his own way that he was hearing "bad sounds" again. He was hearing a group of Canadian geese in the green patch across the street! When I pointed this out to him his face was immediately plastered with a HUGE smile and he shot off chasing the geese!

The same thing happened with a truck down the road. I could not believe he heard it, it was two blocks away! But he did hear it, and again looked confused until he could put the sound together with an actual truck. Way cool.

I remember he was never really interested in the television until he had his CI. I used to sit and translate the kiddie shows in sign language so he could understand them. To this day I have a deep disdain for Barney that most parents will never truly comprehend. I steered away from shows with singing, more towards Blues Clues and Sesame Street. Visually Matt LOVED Junkyard Wars and some robot fighting program. Can't remember the name. But post CI he seemed to be taking everything in with his "new ears". Or new ear, CI, however you want to look at it. I started to keep the TV on all the time. For him, and for background noise.

Matt used to describe his tinnitus like a phone ringing, baby crying, dog barking, train whizzing by (through his head), helicopter flying, depending on the type of tinnitus he was currently experiencing. These descriptions were based on what he learned to hear with his hearing aids. Imagine his joy when he heard those things for real again! Clearly!

He very quickly learned to listen for the microwave beep, when his chocolate milk was done warming. And for knocks at the front door. We started a game where he would sit on one side of the door, I would sit on the other. When I knocked, he would open the door, or maybe knock back. I also remember knocking on the underside of the dining table w/o him knowing I was doing it. He looked so shocked at first! What was that? Then when he figured it out, he would start knocking on the table, too.

About a month into his post-activation, he started to recognize voices. My voice was first for him, and I think it's because I spent the most time with him. He did seem to get female voices in general, before he understood Dad and other male voices. About two months post activation, something just clicked in him and it was like he woke up one morning and decided he understood certain words. I don't know if this is normal, he seemed to progress so quickly. But he did have a hearing history with his hearing aids, and a little speech in the past. I think this helped him tremendously. When we started using speech post activation, I would sign the words for him, too. Kind of a bridge into the hearing vocabulary. Once I saw he was recognizing words, I slowly dropped the signing, moving him from the visual to the vocal comprehension.

I have his notes from school, and I'll have to dig them up to give you more specifics. But I think something clicked by month three, like he was understanding spoken commands. Basic ones, maybe. And I think he was really vocalizing better by month four. But I need to find the notes to help me with that stuff. I know right where they are, and I have nothing to do this afternoon but go through paperwork. Yeah...

But I can tell you that when he started calling me "Mama", using his voice, nothing could have sounded more beautiful. :) I have to remember that good feeling because now he's almost seven, and he'll now call me Mom. "Mom! Chris erased my rainbow!" "Mom! Chris unplugged the game!" "MOM! I want more chocolate milk!" So now I'm at the point where I'm thankful for his speech, but it's just not so cute, ha ha!

Activation.

I'm sitting here, with coffee of course, trying to figure out how to write about Matt's activation. It's such a momentous occasion, I'm not sure I can do it justice. So I'm just going to type it as it comes. Here goes...

Matt's CI surgery had healed and Activation Day was finally here. We had no idea what to expect. Of course, I had in the back of my mind that Matt would be hooked up and immediately hear sound upon the initial stimulation. We didn't have a clue. I went into the hookup room with him, I think an audie and maybe even two. My hubby and some other family sat in another room but could watch through a window and TV feed.

Matt was then "hooked up" and they started the stimulation. I think the first sounds he "heard" were directly from the computer, maybe clicks I can't remember, but not from his microphone. They started their testing, and there was absolutely no response from Matt. Not that I could see, anyway. I was crestfallen, crushed. It was only a few minutes of testing, but it felt like forever. I finally asked the doctor (I think he was there, maybe it was an audie) what happens if his CI doesn't work, at least we tried it. Right? I was trying not to cry. After everything we had been through, all of our hopes for Matt, it was hard to swallow that the CI wouldn't work for him. The doctor had told us in the past to have high hopes, low expectations. In other words, be realistic.

But he told me right there that Matt WAS responding to the sound. Matt was not moving an inch, not even flinching. But when they piped the sound from the computer to his CI, Matt's lily white Irish face would immediately flush beet red. When the tone was done, his face would go back to pale. Again and again and again. Matt just sat there with a very slight confused look on his face. Not scared, just not sure what to think about what was happening. His brain was getting the signal, just not certain what to do with it yet. I was ECSTATIC!!!!! I didn't want to interrupt the testing, but watching Matt's face as a response to the sound, I wanted to jump and scream and shout YIPEE! I couldn't believe that his little boy brain was getting sound input! FINALLY!!!!! And then I wanted to cry because it was at that moment that all of the testing, all of the decisions we had to make, all of that just washed away, melted into the past. Matt's hearing future was just beginning.

After a little more testing, they finally unhooked the computer and exposed Matt to sound through his microphone. For the first time. THAT was when he looked a little confused. He didn't seem scared, just confused. We decided to keep his volume low, then work him up in volume and input as he grew accustomed to his new implant. I walked out of there on cloud nine!

We gathered up all of the boxes, equipment, paperwork, got the family together and went out to the minivan in the parking lot. Buckled Matt up and started the engine. THAT was when he freaked out--by the sound of the minivan engine! He immediately went to tear off his CI, but I wouldn't let him. I told everyone in the van that he was keeping his CI on. We didn't come this far to let him take it off when he felt like it. That would be a bad habit to get into. I turned the volume down, but he kept his CI headpiece on after that. It didn't take long for him to calm down, either. He just seemed to be taking everything in.

I've always wondered if he could hear his own screaming after he heard the motor start up. Did his brain hear the screaming? Was THAT loud to him? It sure was to us. I kind of wished (and have wished through the years) that I could turn down my volume, too, ha ha!

Well, I need to get on with my day. I'll try to type more about his initial experiences. I think we DID put some of that down on the computer, like a journal that may be on our hard drive, in a folder somewhere. I'll try to find that and put in excerpts when appropriate, too. Way cool to be putting this all together!!!

My son just called me on the phone.

No joke. Matt is away at camp this weekend with his Cub Scout group. He just called me on a cell phone and we had a conversation with me on the cordless phone. Clear as a bell. He told me it was raining and the tent he was in was leaking a little. That they might sleep in a truck later if things get much worse. I asked and he told me he was behaving. :) And that he had walked all day and his legs were tired. And that he saw a llama! I asked him about that, and he said it was a real llama.

I just talked to my deaf son on the phone. He was only holding the cell phone up to his headpiece. I am humbled to tears by the technology he has available to him.

When my husband was in Iraq (deployed for a year) he would call home and talk to us. Matt included. My hubby would be on an Iraqi cell phone, or some reporter's phone, and Matt would be back home on our cordless phone. I would turn the volume up to max and Matt would hold it to his headpiece (we need a T-mic!). After he was done, and I'd have to literally pull him off the phone, my hubby would be choking back the tears. I've talked with Matt on the phone before, but tonight it was especially clear, the phone reception, as well as his reception and speech. He has had his implant for over three years now, yet I am continually amazed by what the CI has made available to him.

I just had a conversation with my deaf son on the phone. I don't think I'll ever stop being amazed by that.

Pre-CI Audiogram

Well, I've scanned it in and figured out how to post it. Yeah! Let's look at this. Matt had some residual hearing in the low frequency range. Very little. His cochleas are not fully formed, so we expected the high frequency to be bad from the start, no surprise there. He only has 1.5 turns of his cochleas, vs. the usual 2.25 turns, I think.

Now it looks like he was doing better with aids. Of course he was! But while he was detecting sounds at those ranges, he was not discriminating those sounds well at all. As one deaf adult told me, hearing aids amplify sound, they don't make any discriminations. Matt's perception of sound was probably amplified noise at that point. Matt tested very well in the sound booth, and with any other test that was given to him. What little residual hearing he once had was rapidly going away, we saw the cochlear implant as an excellent option for him.

This audiogram was done just over one week prior to his CI surgery. I have to go through paperwork this weekend, maybe I can find reports post CI activation. That might be cool, eh?

Matt's Pre-CI audiogram.

Matt's Pre-CI Audiogram

Surgery

I just re-read my last post, to figure out what I'm supposed to type next. Ugh! I'm a picky writer, I love to proof my own stuff, but I'm just typing out things as they come to me. I feel it's more important to get all of these experiences down before I forget about them, than to worry about my grammar. :)

The surgery. We had to wait for a particular doctor, because he was in high demand. And he specifically understood my son's malformations, so I wouldn't even think about implanting sooner with another doctor w/ less such experience. And the doctor had to go on vacation. Imagine that, doctors have to take breaks, too!

I remember one funny audie visit soon before implantation. I think the audie told me that Matt did so well with his testing (with hearing aids) that he might not qualify for an implant. This may have been his first test that day. She spoke the word, he identified it by pointing to the picture. He scored 100%! Next she re-did the test, but covered her mouth this time around. Matt went through the test as he was expected to do, but scored 0%. He was such an amazing lip reader at that time, he initially passed as if he were hearing! I'll have to pull out his audiogram and scan it in. He definitely met the criteria for implantation.

Matt's surgery was in October. I'll never forget driving home from an appointment on the day before his surgery. My hubby dropped me off to buy some milk and waited in the car with the boys. As I was getting in the car he told me, "You'll never believe this, but Rush Limbaugh is announcing he's going deaf." My response, "No friggin' way, this has to be a joke." We sat there and listened to the radio. I could not believe what I was hearing! The day before Matt's CI surgery Rush Limbaugh was on the radio announcing he was also going deaf. I privately hoped he would also qualify for an implant, and he did. He had the surgery in December, and finally announced in January that he had chosen an Advanced Bionics implant, also! I remember hearing his speech get worse as time went on, and you bet I didn't miss the show when he first talked about his CI experiences. I still can't believe he has the same implant as Matt! I would so much like to meet him some day and thank him for sharing everything he's been through.

Anyway, my son's surgery date finally came. I don't know that I was nervous any more, I just wanted it done. Because of Matt's balance problems, I fully expected him to be imbalanced post surgery, and he was. I figured the pressure, swelling post surgery would affect his inner ear and balance, and it took almost a week for him to be walking 100% normal again. I'm not totally certain about this, I don't have the paperwork in front of me, but I think one of the doctors mentioned they did have a "gusher" upon entering the inner ear. I think that's a release of built up fluid, but I'm just a mom, not a doctor. As a fast forward, Matt's doctor anticipated a gusher also, but he didn't have one. He also was up and around immediately after surgery, as soon as the sedatives wore off. What a switch! Another example of how each child and experience is totally unique.

Medication. Oh, boy, Matt did not want to take his antibiotics. I have no clue exactly what he was supposed to take, just that he said it tasted bad and he would not take it. I tried hiding it in everything, we tried holding him down and forcing it into him. We were confounded. I told him, not that he understood, that we were not coming this far and then risk infection because he wouldn't take his meds. We lived on a small post and I called the clinic. It was a tiny post with only two doctors, everybody knew everyone else. Thankfully the doc there that day was someone I really respected. I told her that Matt absolutely would not take his meds, she told me to bring him in. I think the clinic was only four or five blocks away, we were there in minutes.

With help, we were able to get the medicine into Matt. I sat on the bed with Matt in my lap. We ended up laying down as one sailor held each of Matt's arms and legs, four sailors in all. Then the doctor pinched his nose, put the meds in the side of his mouth, and held his mouth until he swallowed. It took SIX grown adults to get Matt to take his meds!!! That kid was only 39 months old, but stronger than an ox! Matt learned that I meant business and was not messing around. I came back for the next dose, and they helped me again. For the third home dose I had to drive Matt to the clinic, but he took his medicine in the car, before I got out to take him in. We didn't have problems getting him to take his meds after that, he did not want to go back to the clinic. :)

We had to wait almost six weeks until activation. This is not normal, but I think there was a scheduling error. Regardless, we waited, Matt healed. By this time he was going to school full time at the school for the deaf. Believe it or not, he still sat in with his speech therapist and tried to do some work with her, too. Matt is amazing when it comes to school, he just soaks it all in and craves more. There were teachers and staff who were opposed to what we had chosen, but they didn't tell me that until later. And then they told me how different everything was than what they expected! In a good way, too. But more about that later.

Matt's progress post CI was amazing. Each and every child is very unique in their abilities and desires. But Matt blew us all out of the water with how well he did post CI. I'll tell you more in detail later, but the big picture now. He did have a hearing history pre-CI. As spotty as it was, it helped. After about a month post CI, something "clicked" and he seemed to understand sound. That it had meaning and came from something, somewhere. Then a month later another "click" and he was understanding words. Then another month and he was following directions. By this time his approximations were vastly improved and he was "talking" again. A stranger might not have understood him, but we sure did, and his teachers did. I think Matt went to speech almost every day, and he liked it so much they had to practically kick him out. Remember, this was at a school for the deaf, and they were truly amazing. The speech instructor there was AV trained. Matt was in a small group which had stronger oral skills. He signed, but used it as a bridge into spoken language. We absolutely would not take his first true language away from him for the sake of his speech and aural rehab. But he found that he loved to hear again, that it was easier than with hearing aids, and that he loved to talk. With his hands, and absolutely with his voice, too.

I'll try to write more about specifics next. What sounds he seemed to hear first and how we helped him at home. Gosh, it's so cool to remember these things! :)

Decisions, decisions, decisions...

Man, parents make so many decisions about their children, it can be overwhelming. People questioned my judgment just about drinking coffee when pregnant. Then there's the belief that natural childbirth is better than hospital/medicated/etc. I tried natural childbirth in the hospital with Matt. The nurses couldn't get the drugs in me quick enough by the time I was having Chris, they had to orally admit me before the paperwork was ready.

Then the baby comes along, and if you're lucky enough to be blessed with a boy, you're faced with, "Does he get a circumcision or not?" People came out of the woodwork to tell me that if I circumcised my child, the pain would imprint upon his permanent memory and scar him forever. No kidding.

Nurse him, or use formula? The baby has to sleep on his back, but we decided on a "wedgy". Couldn't make up our minds, let him sleep on alternating sides. We had him christened, pretty much chose his religion from the start. Does the child sleep with the parent or in his own crib? Do we let him choose his own activities, loose schedule, or have a strict regimen he must follow? I chose to stay at home instead of go to work and have someone else watch him. It's not so much that I thought it was a better decision, I just wanted to stay at home. Really, I was lazy. :)

Oh, then the choice, how to discipline the child. What? My perfect son? At least he SEEMED to be perfect with no need for discipline when he was a tiny baby, sleeping in my arms. Babies grow, they really do. And they develop character, and ATTITUDE. They become little boys (or girls). So should we use mainly positive affirmation, never ever use the word NO, or become very strict from the start? There are a million books on this topic. I had bought five, and finally gave up on reading them.

These aren't just simple choices. There are parents so militant in their own camp about the decisions they've made, that simply put anyone who chooses otherwise is Wrong. We came across a few folks like this when we decided to go for the cochlear implant for Matt. And to dispel any myths, not one single deaf person we knew at that time came up to us and told us it was a wrong decision for our child. Maybe some felt that way, but we never heard about it. They did question us later, in person, but not when we were making the decision. We felt as if we were being watched, though. Watched and supported by family, friends and coworkers.

Which brand to choose. It wasn't like we could change our minds after the implant was in Matt's head, this was the hardest decision we had in front of us. We had information in front of us from the companies. We had time to review everything, as we had to wait for Matt's surgery, so we weren't rushed into this choice. We weren't pushed by the doctors, audies, teachers. They were all very open about what was available to us. This was a very personal choice, and it is for every person facing it. We had to choose what was right for our son, not anyone else. Just like all of the other decisions we made for our Matt.

We chose to go with the Advanced Bionics CII implant. We already had wonderful support from the company, answering every single question we could possible think of. We had met a mom of a little boy who used that implant. Static had been a problem for CI users, but we couldn't find this was true with this particular model (after asking other parents, the company and implant center). I LOVED the upgradeability of the internal part. The future of HiRes programming was what I wanted for my son. And I hate to admit, but it's true, I liked the simple headpiece. It just looked good. I'd like to think I'm a deeper person than that, but even the appearance helped us make a decision.

Oh, we were so excited!!!!! Our son may hear again! We had fully accepted he was deaf, always would be. We were continually trying to understand that part of his life. But oh my gosh, he was actually going to hear helicopters again! The clock chiming, the kids screaming in the park! Us yelling at him to stop running from us! Very simple, but important to a parent. :)

Truth be told, we didn't know exactly what Matt would hear. We were just excited for him. We had been through so much from finding out he was deaf, going to all the doctors, audie visits, in home and out of home schooling, sign language classes as well as speech. Life was just overwhelming at times, but the journey was only beginning. As the date for his surgery grew closer, we felt like none of the past mattered. Well, it mattered, but we started to feel a weight off our shoulders. We were beginning to understand our son better, what he was going through, and we felt like we were doing the best we could to help him. Waiting for the surgery became the hardest part. I would joke with the Implant Team that if there were an opening along the way we'd take it! But we had to wait for a particular doctor, given our son's age and malformations. The doc was in high demand, and worth the wait. It was a short wait of weeks or maybe a couple of months, but it felt like years. But the CI surgery was finally going to happen! Yeah!!!!!

Hmmm... I made some coffee this morning, haven't had any yet. Those who know me KNOW I need my coffee in the morning. SO, I'll write more later. Of course, about the surgery. I'm trying to keep this chronological, best I can, but things will pop up along the way. It is so cool to remember these things again. I feel like the memories won't be lost along the way now. We move so much, so many new faces, homes, schools, it's hard to keep things straight. But our sons' CI experience, and our journey as a family, is very important to me. I wasn't to remember it and share it with them later. :)

Reactions.

I didn't post this morning, brought Josh to aural rehab and am going to get Matt soon from school.

I was just thinking about people's reactions when they found out Matt was deaf. One family member thought maybe he was autistic first. Someone else said if they had to loose a sense they would want it to be smell, not sound (HUH?). The people at my hubby's work were VERY supportive. We heard several times from them, "If this had to happen to a family, Matt is very lucky to have you guys as parents. He will be fine." How strong a family we were, how smart and Matt would benefit from that (shucks, make a gal blush!). The coworkers even pitched in to help us move that summer when everything seemed to be falling apart. They were great.

Can't say that about most of my friends. All of a sudden they didn't know what to say. People I had known on that tiny post for a while. They thought Matt was too rough, too physical. That was the excuse I heard, but not what I read in their faces. They used to talk to Matt, but fell silent. It was just too strange for them, and all of a sudden we found ourselves w/o good friends. That made us feel double blessed to have good support at Hubby's work, and to be near family in that particular point in our Army life.

I've made some amazing friends since then, but I've never forgotten how it felt to lose friends over my child's deafness. How shallow those friendships must have been! The gals that were my closest friends weren't in the Spouses' club. The gals in the club were nice, but we were never best of friends to start with. It was the ones I was closest to that hurt the most to lose. I would have thought they would understand, be able to speak openly with me. Instead I had to find out from others why they were all of a sudden avoiding me.

One day in the park I was frustrated with Matt. I told my "friend", "It's really hard to get his attention!" I'd have to make sure he was watching me so that he understood what I was telling him. My friend replied something along the lines like, "I know! Do you understand now why we (I guess she was speaking for all the gals) don't know what to say?" My response, "Gee, no. I don't have a clue. I thought you were a friend. A real friend would have talked to me about this by now!" I got Matt and went home. I couldn't believe that I had friends before then that would be so shallow as to leave me hanging when the bottom of my world fell out.

Seriously, I have MUCH better friends now, and have worked hard to make sure Matt is happy with himself just the way he is. That EVERYONE has something about them that makes them different, whether we can see it or not. That even when people are rude we have to treat them with respect, like it or not. I've learned to bite my tongue. And I've appreciated using sign language to talk with my son about someone being rude and why I would be ticked off, WITHOUT that person having a clue what was being said. :)

Okay, enough for now. Time to wake up two perfectly sleeping boys to pick up another at school, groan...

Support, Choosing to go for it.

Wow, I just realized that anyone reading this will have to wait through the history before we get to the CI part. Don't worry, the history is important, too. Helps show how and why we made certain choices. And that everyone comes from a very different place in life, takes a unique path.
Well, there we were. The only folks on post with a deaf child. Boy, did we stick out. There were maybe 3000+ folks who worked there, a good 2/3 of them were civilians. Very interesting place. I would have never guessed how many deaf adults were working there at just that moment in time! :)

As soon as people found out our son was deaf, we heard that two of the three post photographers were deaf, too! Then we met a couple at church who was deaf. Well, they both had a hearing loss. I think the man is deaf, and the lady was hard of hearing with hearing aids. She's actually considering a cochlear implant now, too! We met them at our church just off post, I think, at a signing service. I can't remember exactly how we met them first, but that's what sticks in my mind. They became very important, good friends of ours, and remain so to this day. Through the lady I learned of maybe 8 folks working on post who were deaf! Some of their co-workers had learned sign language, some used TTY, a few of the workers were excellent lip readers and speakers. We got to know that first couple the best, they were very supportive of us and and the journey with our son. We learned a lot from them.

Okay, now I have to admit to you, before I knew my son was deaf, I never noticed people signing on post. Once I opened my eyes to it, I saw signing everywhere! I was such an ignoramus I wondered what kind of future my son could have, how hard life would be for him. Would he ever be able to drive a car? Who would he marry? How will I teach him the basics like colors and the alphabet? I seriously wondered about these things, I didn't have a clue. Imagine my shock when I was at the School for the Deaf and one of the deaf instructors drove up in a car. I even remember what the car looked like, how shocked I was at my own ignorance!

Well, the deaf friends we met were very open and welcoming to questions. We even participated a little in the signing service, as we learned more. One of my strongest memories at that post was going to their home for New Year's Eve with another deaf couple. We had learned some sign language at that point, and were pretty good at picking up languages, but our brains hurt trying to keep up! I swear, and I'm betting my friend will read this thought here for the first time (I've never told her this), that as they drank more beverages, they began slurring in sign language! I never, in any of my ASL and SEE classes, ever learned about this! But it was a very fun time for us, a great group of people who made me see my son as a normal kid. That being deaf was okay, just a part of his life. Something we could learn about and help him.

We also had a ton of support from the School for the Deaf (SFD) back there. Some of the parents were also deaf, some hearing. The children were deaf for different reasons, too. But the school was amazing. I have found in my CI experience that many CI parents will immediately turn their noses up at the mention of a SFD. That makes me so sad, to know what they are missing out on. Don't get me wrong, these schools vary as much as any public school system does, but I found Matt's first SFD to be exactly what we needed at just the right moment. They did teach ASL, but were also very vocal with students who could benefit from that. The speech therapist was AV trained, very experienced, and Matt loved and excelled with her help. The first teacher with Matt had been around for over 20 years at that school, I think, and she had seen it through many changes. I think it used to be only oral! Then a swing to strongly ASL, and when we were there it was going through changes again. Thank goodness. I found this school much more open to changes than the public school district.

The public school system was a nightmare. Our Early Intervention was wonderful, but once Matt reached three, he was going to be lumped into a program that all of the deaf/hoh kids went through. Very little room for Individual in the IEP. The program manager seemed to have very little if no interest in the children's actual needs, or concerns of the parents. She actually fought with the parents, quite loudly for almost two hours, during the Open House! I kid you not! She said, and I quote, "We have a program here that we think is appropriate for your children. It may not be what you think is BEST for your children, but it is appropriate. That is all we must provide by law. We do not have the money or the resources to do any more." Parents had volunteered to build a better speech room, out of their own resources, to code, etc., she wouldn't have anything to do with that. We stayed with the SFD. Our personal choice, and it did work out best for us.

Well, back to the CI. Through Matt's experience with his hearing aids, and his acquired oral and sign vocabulary, he was able to tell us he wanted to hear again, even though his HAs didn't work for him any more. He was sad that he couldn't hear helicopters any more (except in his bouts of tinnitus). He was confused that he couldn't hear his baby brother screaming (except again, in his tinnitus, try explaining that to a kid in his position). He wanted to honk the horn and actually hear it. He wanted to push the button on his castle toy to hear the ghost sound again. He kept turning up the TV volume to hear Blue's Clues, until this didn't help him any more, either. Even at his age, barely three, he was angry that he couldn't hear any more. He only had a small taste of sound, and he wanted it back.

We had that year to think about a cochlear implant, to learn what the surgery and habilitation involved. We had already been so deeply involved in Matt's life that I knew we could handle working with him and a cochlear implant. To be honest, the decision to get a cochlear implant was not an easy one. I had grown used to him wearing hearing aids. I was so sick of bringing him to doctors, I wasn't really sure I wanted to put him through an actual surgery. But it was very hard for me to watch Matt explore and enjoy his hearing with aids, and then to grow angry when he couldn't hear any more. It seemed to mean so much to him, at his young age.

There wasn't much online support at that time, but I did contact the implant companies to get some info on their implants, and I talked with everyone who had worked with Matt. The school and the hospital were very hands off, not pushing us to or away from an implant, and not directing us to any certain brand of implant while we were making our decisions. Advanced Bionics DID put me in touch with a CI mom in our area, though, who actually made the effort to drive out and meet us, introduce us to her young CI son. He was 18 months old then. We were able to introduce him to Matt, show him the implant. Matt called it the hearing aid INSIDE his ear. That's how he looked at it then. The decision was very easy after that.

Okay, I need to pay attention to the boys, need to type more later. Next posting I'll try to focus on family reactions, and how we chose which implant we wanted for Matt. This is helping me get my thoughts straight, anyway!

Identified, now what?

I may have given the impression that Matt got his ear molds that night in the hospital. No, his fittings were sent off, and we got the ear molds one, maybe two weeks later, and loaner hearing aids from the clinic.

But we woke up that next morning with a deaf son. He was always deaf, but now he was finally, "properly" labeled. Now what do we do? We didn't even have the hearing aids yet.

This was a bit of a stressful time in our lives. I was finally pregnant with our second son, after a couple of miscarriages, and had recently been hit by another car. At one point we thought we were going to loose this pregnancy, too. We didn't, but that was just the beginning of our stressed-out summer. We had some other issues we were facing, too. So I'm left to carry my chunker son Matt around while pregnant with my next son. THEN we had to move to a different home on post, I had to do most of the work as my DH was busy with work. This was all during the same time our son was finally diagnosed as being deaf. Very interesting summer.

So what could we do? I was so tired I didn't want to move. But I made phone calls. The audie had given us a booklet of resources in our area, and I immediately started contacting folks who could help us. Within days I had a case manager with the local school district, and Matt was soon evaluated for in-home early intervention. I also signed him up for early intervention at the State School for the Deaf, one hour away. I did this with an open mind and am SO thankful I did. Although they used sign language, the school for the deaf (SFD) had a speech therapist who was AV trained, and they really did work on Matt's oral skills. They worked hard with each child at their individual levels. Amazing. So Matt ended up with an in-home therapist one, and eventually two days a week, and I drove to the SFD for sessions two days a week, too. On top of almost weekly visits to the hospital, almost two hours away. I learned ASL at the SFD, and the county gave us a SEE instructor at home one night a week, too. I believe in covering all of the bases!

Remember I was pregnant while I did this. This is the time in my life I started to drink coffee. While pregnant. Someone at the SFD asked me about drinking coffee while pregnant. I told them that drinking coffee had to be safer than driving off the side of the road.

I moved like a rocket ship, fast forward. That was just how I coped. The mountains of paperwork just kept growing, and I was forced to develop a good filing system for everything. I was trying to learn everything I could about my son, how I could best help him.

Surprisingly, Matt did well with his analog hearing aids. For a while, we didn't think he would need a cochlear implant. Matt was learning to recognize sounds, started making his own sounds, too. He was really enjoying his teachers and playgroups, and would sit with his speech therapist for an entire 45 minutes! He just wanted to learn. This all started in August, his schooling in September. I still have his communication books, notes from the teachers. Really cool.

But then the Spring came along. Chris was born in January, was finally sleeping through the night, and then Matt's "dizzy spells" started in March. The months previous to this Matt had had his pre-CI MRI and CT scan, and had been diagnosed with bilateral Mondini Dysplasia (in his case 1.5 vs. 2.25 turns of the cochleas) and Enlarged Vestibular Aqueducts. So we were now thinking his imbalance may have something to do with his malformed inner ears. NOT something neurological, after all of those other tests we had run in the past. But Matt went through almost three months of weekly periods of imbalance. It was scary at first.

I remember Matt just walking inside the home and then he just couldn't walk. He was listing to one side again, couldn't hold his head up, started to throw up. Freaked Out Mommy was back in full force. I absolutely HATE to see kids in pain, and this kid had the most confused look I've ever seen on his face. We rushed him to the doctor, and had another overnight stay. We couldn't find anything obviously wrong, and he improved a bunch, so we went home. It took days before he could walk much better, then it would happen again the following week.

Many times it would happen after being outside. Once after getting bumped on his head by a girl in the park. And then it would happen when he was laying prone in bed at night. We ended up sleeping with him, holding him upright through the night. And we stopped giving him chocolate milk before bed, too. I became a pro at cleaning up puke, I hate to say. My new baby was sleeping through the night, but we weren't.

I started doing my own research on inner ear malformations and balance disorders. Nothing seemed to fit just right until I came across a parent online who had gone through the same thing. She found that her child had bad allergies, and these allergies possibly aggravated the inner ear, caused swelling of some sort, and it left her child imbalanced. Well, a knock to the head or an ear infection can cause swelling and maybe imbalance! This was starting to make sense! She said she gave her child Benadryl and noticed an immediate positive effect. Couldn't hurt to try, right? Heck, at this point I had actually accepted that my son would never walk normal, would have to live with his dizziness. How could Benadryl hurt? I asked my doctor if it would be okay to try, he agreed with why not. It really did work in Matt's case. If he did get dizzy, it would at least soften the effects. We were popping it in him every four hours, around the clock. Other than that, we were sleeping through the night, finally!!!!!

Through this we did notice that he was worse on yellow pine dust days. Not so strange, as I have minor dizzy spells and tinnitus when the yellow pine dust was bad. So did our neighbor across the street then. It all just fit together and the Benadryl worked for us.

During this time his hearing took nosedives. That was hard to watch, as well. I still have all the audiograms in chronological order. Matt tested very well in the sound booth, but with every dizzy spell his residual hearing would decrease. We had digital hearing aids at this time (thank you insurance!), and the audie would test Matt and then try to update his hearing aids to help him better. But his decline was rapid and there came a day when the audie told me there wasn't anything more she could do with the HAs. Huh. It had been almost a year since Matt was diagnosed, and we were back to considering the cochlear implant for him. Finally.

I need to get more coffee, kids are waking up. But I'd like to share more, maybe later today. I hope to talk about the support we had on post, the deaf folks who worked there, and how we finally decided to get Matt a CI. So many things are coming to mind as I type this, I'm very glad I'm finally putting everything down. I wonder how much of this Matt remembers. He can express himself quite well. I'll ask him if there's anything he'd like to add later, too. I'll type, of course! :)

How did we feel? Good question.

We suspected Matt had a hearing loss somewhere around 15-18 months of age. Well, at first I figured he just didn't listen to me, like all the other guys in my life. :) A guy thing, if you will. Like instead of having two X chromosomes as in women, the men have an X and a Y. I figured they are all missing crucial listening genes in that lacking chromosome material, the difference between the female X and the male Y chromosome. It must have just broken off during evolution? I don't know. But I digress...

Anyway, around 15 months Matt fell and bumped his head twice on the way down. I can't believe that was over 5 years ago, but I can still hear it as if it had happened five minutes ago. He was only five feet away from me, but I didn't actually see him because he was on the other side of a book case. He had already been walking steady for at least four months, but he just fell, apparently bumped his head on the book case and then the floor. Best I could figure. Well, he walked over to me crying, I held him for a while, he calmed down and then walked off to play more. About 15 minutes later he's trying to walk to me but listing to one side, very unsteady and falling a lot. His eyes were moving left to right, I think he tried to vomit, too. Panic set in, I called 911.

I lived on a small post then, across the street from the fire department. While on the phone waiting for a response from the 911 operator, I looked out and saw the Emergency Squad guys cleaning out their ambulance, screamed for them to high tail it over to the house. They weren't exactly trained for toddler rescues, more for military emergencies. They were going to wait for the local squad to arrive, but I pushed them into zipping us immediately to the hospital. I was Freaked Out Mom #1 at that moment, and I think they were more afraid of me than what was happening to my son.

Well, Matt seemed to improve a little at the hospital, but the doctors kept trying to get me to say his eyes were moving up and down, not left and right. I couldn't figure out why. Then they transferred Matt to another hospital for a stay and more tests. It took him a few days to fully regain his balance, but he was perfectly fine in about a week. For 6-8 months he was tested for everything neurological under the sun. If there was a test for seizures or other problems, he had the test. To make a long story short, he had absolutely nothing neurologically wrong with him.

As our final straw, the last visit with one of the top pediatric neurologists in the state, Matt was declared to have "nothing apparently wrong" with him. As the doctor was trying to shoo us out the door I asked if he thought Matt might have a hearing loss. The DOCTOR rolled his eyes up (I wonder if HE was having a minor seizure) and conceded to me, agreed to give him a little "hearing test". The doc took out a big clacker thing, clacked it behind Matt, Matt turned his head and was declared hearing. The Supreme Doctor felt he had satisfied Freaky Mommy's concerns. Not.

I now look back at that and realize Matt could have seen the clacker out of the corner of his eyes, felt the slight breeze as the doctor flapped the clacker, or possibly the sound was at just the right frequency or decibel range, close enough to his ears that he actually did hear some of it. But it was definitely NOT an accurate test.

I knew something was still wrong, and I was starting to strongly suspect hearing loss. We even started teaching Matt sign language, which he immediately picked up. I also made yet another appointment with our family doctor, at our tiny little clinic. At that appointment I told our doc that I absolutely was not leaving her office until she put in a referral for Matt's hearing to be tested. A few weeks later he failed his first hearing test. No surprise. A few weeks after that he had an ABR, and tested in the severe to profound hearing loss range for both ears. Simply put, my son was deaf. We knew it in our hearts, but it was a totally different thing to see all the lines on paper, literally in black and white.

How did I feel just at that moment? Shocked. Numb. Our fears confirmed. I watched my boy lying there on the bed and wondered how many stories I had read to him, how many songs I had sung to him, how many times I had told him I loved him, and how much he had actually heard? I wanted to hold him tight, make everything all right for him. Kiss his forehead and pray to God for a miracle of hearing. Or that the tests were wrong.

I wasn't paying attention to the audie at the time, too many other thoughts and feelings going through me at that time. But she told us she could fit him for hearing aids and maybe he'd eventually qualify for a cochlear implant. All this was so new to me I didn't know what to think, but this information gave me something to grasp onto. Some possible way to actually help my son. It snapped me out of my thoughts and immediately activated me. I'm the type that will prep for the worst case scenario, then move forward the best way I could. Simply put, I wanted a cochlear implant for my son A. S. A. P. Like yesterday, if possible. :)

Not the way it goes. FIRST, the audie explained, Matt needed to try hearing aids, and again, he could be fitted for them on the spot. How would you like to pay? I wanted to hand her the credit card and say charge it now, let's get it done. She said most insurance companies wouldn't cover ear molds, or even hearing aids, but would I like to call the insurance company and ask them some questions? The hospital could even provide us with loaner hearing aids until we determined if he even benefited from them, or until insurance paid for new ones.

So I called the insurance company. I still feel for the poor lady who was lucky enough to get my call. "When was your son diagnosed with a hearing loss?" "About 25 minutes ago." "Well, for durable medical equipment (HUH?) you have to go through a different program for authorization. I can send you the paperwork and you'll need your primary care physician go over it, local public health authorities blah blah blah..." "Hello, Mam? The audiologist is right here telling me she can fit him with ear molds right now. Are you telling me I will have to wait until you get me the paperwork, my doctor reviews it, etc. etc. etc. until the insurance company will pay for the molds? Fax me the paperwork right now at the nurses' desk and I'll have it filled out, fax it back to you..." "We would need to assign you a Case Manager to review your case before we would authorize payment. That could take two weeks." "Are you telling me that I have a test right in front of me that says my son is profoundly deaf, he could immediately be fitted for hearing aids and maybe benefit from sound, but we're going to keep him in silence while my paperwork sits on someone's desk for review?"

That's exactly what she was saying. Poor, poor Insurance Lady. She had to feel my wrath, became an easy target for Freaked Out Mommy. It is so easy to get frustrated with the whole insurance system, I guess I was off to an early start. I had to yell at someone that night, she was a nameless, faceless person, undeserving of my anger. I have since learned to be very polite with the insurance personnel, and they have served us well. The insurance has covered all of our hearing aid and cochlear implant needs for years, but that night I charged ear molds for my first son.

It was a two hour drive back to post. Dark, rainy, gloomy. Very fitting. We didn't have a lot to talk about, we were in such shock. My husband didn't vocalize his feelings well at that moment, he told me he just didn't know what to think. In my head I was already writing a letter to Any Congressman complaining that the insurance company assigned to soldiers serving the USA was not covering my son's ear molds.

I was President of the post Spouses' Club, and we had a meeting that night. Our club was working through some problems. I had spent weeks calling past members, prior Presidents, and convinced them to come to this specific meeting and promised we'd work out some of the major problems right then and there. As it was I was late and didn't care. But then it occurred to me that the VP, major PIA Herself (Pain In the A**) was running the meeting, yet another easy target for my wrath that night. I had my husband drop me off at the meeting and take our son home. I was so overwhelmed at that point, I have no clue what I was thinking. Maybe a diversion was okay, a meeting with a group of ladies, most of whom I liked and looked to for support.

I walked in the meeting and the VP was doing her thing. So I stepped in. "Listen ladies, I am SO GLAD to see all of you here tonight. I just came from the hospital, haven't even been home yet. You all mean that much to me, I think it's important for us to work some things out. But let me first tell you something. Matt was just diagnosed severe to profoundly deaf. Both ears. I am in shock about this, and not in the mood to sit here an put up with any petty fights and squabbles. This is how it's going to be..." Nothing like a little shock value to wake folks up. Shut them up, anyway. I stuck to the meeting, it went better than any we'd had in a long time, and set the ground work for a much stronger group. After the meeting I was in a perfect place for support from a lot of friends. But I was still clueless about what the future would hold.

The meeting finished, I went home and my hubby already had Matt in bed. We didn't know what to talk about, everything was still sinking in. We were glad Matt was already learning sign language, at least he finally had the use of words. That had relieved some of his frustrations. Our hunches about his hearing loss were confirmed. So we just sat at home and watched TV.

Our "normal life" had just crumbled. We had no clue what we were supposed to do next. Nothing in parenting books about something like this happening to your child. What, give him 1 tsp. of Children's Motrin, up his fluids, and the hearing loss should go down, improve while he slept? There was some support on the web at that time, but not as much as I had hoped for. We didn't even call our family. No, wait, maybe we did call his parents and my mom, but I can't even remember that. That's still in a bit of a fog. We had no clue what life with a deaf child was supposed to be like, how we could help our son.

Wow, what an eye opening experience. It felt as if our Old Lives had just stopped, back there at the clinic, and we were starting our New Lives that night. We had been through a lot together, Hubby had been overseas, seen and done some tough things, but nothing could have prepared us for that night.

Well, enough for now. I'll try to continue along these lines in the next post. Right now someone needs a diaper change. :)

So many questions...

We've been through a long journey with our boys already, and so far to go.

Last week someone asked me how I felt when our first son was diagnosed as severely/profoundly deaf. "Were you devestated? Did you cry? How did you feel?" "Yes, Yes and I was in shock." Well, we've answered many questions over the years, but this one got me thinking. I have never written down how I actually felt, what we've been though with our boys. I've finally decided to do so, not only to help us document our "adventures", but also to share our trip with others. I remember feeling very alone when we first found out our son was deaf. I didn't know any other deaf folks. There wasn't much information on the web at that time, either.

I'm probably going to side track a bit, I'll try to start posts from the beginning. But a very quick overview first.

Our first son, Matt, was dianosed deaf when I was pregnant with our second son, Chris. Chris can hear very well, chooses not to listen on a regular basis. :) We have since had a third son, Josh, who was diagnosed deaf at birth. Matt and Josh have tested positive for Pendred Syndrome, both have bilateral Mondini dysplasia (in their cases 1.5 turns of the cochlea vs. 2.25 turns) and Enlarged Vestibular Aqueduct systems. Pardon me if I get terms wrong at times, I'm a Mommy, not a Doctor.

Matt was diagnosed deaf at 25 months old, benefitted from hearing aids for a brief time, then was implanted with the Advanced Bionics CII implant at 39 months. He is now almost seven years old. He used sign language in the beginning, but has always been strongly oral. He has upgraded to the HiRes programming with his CII implant, fully mainstreamed in first grade with the help of a Phonak Microlink FM system, and never stops talking, ha ha!

Josh was diagnosed deaf at birth, fitted with hearing aids at one month old. He had a nasty series of ear infections, undiagnosed for who knows how long. These even affected his balance. Finally he had tubes at 14 months old, immediate improvement! We waited until the end of cold/ear infection season for his implantation, he received his Advanced Bionics 90K implant (HiRes programming) at 16 months old. He is 15 months post activation, very good receptive abilities, still working on expressive language. While he is using sign language, we work very strongly on his aural/oral skills, too. He is now using word approximations, but needs to work on his oral muscle tone, motor skills, etc.

Well, that's the overview. I'll try to answer the first question in my next post, "How did you feel when you found out your son was deaf?" Right now I have to get that very boy off to school! :)

My Bionic Boys

My Bionic Boys, how very patriotic! ;)