Ben's journey into a hearing world.

Breakfast With Santa

2011-12-21T15:06:00.001-08:00

Today we went to Breakfast at the Salem Riverfront Carousel. This is a yearly event for kids who are served through the Early Childhood Special Education program with out local ESD. An employee of the WESD donates enough money each year to fund the event for about 35 families. We were lucky enough to be one of those families this year!

We started our visit by checking Santa's workshop to find Ben's name on the nice list

Then we sat down to a great breakfast.

Ben was too excited to eat.

After breakfast, Santa brought the carousel tickets. They were frozen on a platter because they had just come in from the North Pole. So cute!

When the carousel first started the silly conductor got confused and made it go backwards.

Addilyn had a blast! Ben rode the 'biggest horse' of all!

After the ride, all the kids sat down to a story with Santa.

Ben and Addilyn also got to sit by Santa in his sleigh. (They both prefer Santa from a distance.)

Santa gave each of them a book about a carousel horse and a bell.

What a great morning all thanks to a very generous man and some wonderful volunteers!

Veteran's Day

2011-11-13T21:03:00.001-08:00

In honor of Veteran's Day, a town close to ours hosted an exciting celebration- a Blackhawk Helicopter landing. Ben was super excited and certain he was going to be driving it. Addilyn, as usual, was just happy to go somewhere.
We arrived just in time to see the helicopter land in Riverview Park.

Excitement!!!

Ben pushed his way through the crowd of people and climbed inside. He sat in each one of the seats.

And the Pilots seat! He got to push all the buttons and move the controller.

He said, "Buckle me up Mom. I'm ready to go!"

Just giddy with excitement!

Ben also got to 'drive' a Firetruck. An actual Fireman climbed in while Ben was at the wheel. Ben turned to him pointed to the back and said, "You can just sit right there." Poor guy!

Watching the Helicopter take off was really cool. It took the pilots along time to get ready, even after starting the engine. In this video Ben is saying, "Say cheese pilots. Say cheese for Mommy." Pilots sounds like 'pirates'.

To top it all off, the local paper took a picture of Ben in the Pilot's seat. It was published the next day. You can see it here:http://www.statesmanjournal.com/article/20111111/UPDATE/111111025/Vets-honored-mid-Valley-events?odyssey=nav%7Chead

click the little 'more' button under the picture of the guy on the horse on the left hand side if you can't see Ben's cool picture.

The next morning, when I got Ben up, he said, "Ok. I'm ready to go fly my helicopter now."

It's so much fun to see my little boy that happy.

Pumpkin Patch

2011-10-15T22:54:00.001-07:00

Last weekend we went to our favorite pumpkin patch. This was Addilyn's first trip and definitely Ben's most memorable.

We went through a corn maze, a dark maze, down a hay slide, rode trikes, and much more.

We were surprised how much Addilyn loved the tractor ride.

She also had fun crawling through the tubes

and playing in the wheat bin.

She sampled a few handfuls.

Ben examined LOTS of pumpkins looking for his favorite.

It was difficult to concentrate with straw down his pants.

He persevered and found the PERFECT pumpkin.

Once Ben found his pumpkin he tried eating it. He said it did not taste good at all. I told him pumpkins need to be cooked to be tasty. He cried, "No! Don't cook my pumpkin!"
After that, the pumpkin remained heavily guarded. He took it to daycare the whole next week and slept with it for the next two nights. When he left the room without the pumpkin he'd give me a warning look and say, "Don't cook dat pumpkin Mommy!"

Ben would have taken the slide home if were at all possible.

I think Daddy would have agreed to that one too!

Addilyn went down a few times on my lap and LOVED it. But, no pictures when the photographer plays!

After 4 hours of playing we were all exhausted!

What a great fall day!

Farm Boy

2011-08-19T11:23:00.000-07:00

Ben is quite the little farm boy.

He loves to feed all the animals in the morning to help mom out.

Like every good farmer, he takes care of his animals before breakfast while still in his jammies.

Addilyn helps out a bit too.

Ben starts by giving the dogs water

and then some food.

Frank and Lilly get some apples.

The chickens get some corn.

Back to the horses for their grain.

A little in the buckets and a little on the ground. Gotta keep the mice happy too :)

The horses get some fly spray.

And he's done ready to enjoy an apple and a game of shape hop scotch

while Addilyn enjoys her apple too.Then we're off for toast and jam with Mickey Mouse!

Let the day begin.

The Great Oregon Stream Up

2011-07-30T17:25:00.000-07:00

Today we went to the Great Oregon Steam Up in Brooks. We saw cars and motorcycles, trains and trolleys, tractors, trucks, a saw mill, a blacksmith, hot air engines, steam engines, and lots of heavy equipment. Most of it was running and working or being driven. Needles to say, Ben was in Heaven!

Just one of the many!

Ben and Mommy rode on a little train. It was fun!

Grandma Mary's friend Katie brought us a yummy lunch.

Addilyn enjoyed this part the most.

Ben got to drive a real firetruck.

The hoses were extra cool.

Ben and Daddy added to their Christmas wish lists.

We all rode on an antique trolley.

Ben loved lurching through the park.

Grandpa and Addilyn enjoyed the scenery too.

All in all it was a fantastic day!

The highlight of the day for Mommy was meeting a 24 year old man with a Cochlear implant. He got his at age 7 after losing his hearing at 5. He and his mother told me about his public schooling, how their whole family learned to sign, the controversy they encountered when they decided to implant, hearing in noisy places, and his balance issues. He still wakes up nearly every morning nauseous- what I think is happening to Ben, he just doesn't have the vocab to describe it. I learned so much in just 15 minutes. Ben loved seeing a guy with an 'ear' just like his!

We talked as the tractors sputtered and he listened with his 17 year old implant ( a real antique!) I asked if he thought about getting his second ear done. He said, "No. This is just the way I am. I do fine."

And on the way home, as Ben screamed with his ears off, taking them apart into tiny pieces to fling throughout the car, Grandpa and I said, "He'll do fine too. God help us all!!"

Oh, and that mom was a fighter. I could tell. Her kid is fine because she was his advocate. Hmmm....

Berries and Swings and Gators. Oh My!

2011-07-27T19:48:00.000-07:00

Yesterday we went berry picking at Grandma and Grandpa's house.
Ben loved the blueberries.

Addilyn loved watching.

He carefully picked only the ripe berries for his bucket.

Grandpa gave Ben, Tanner and Mickey a Gator ride down to the cherry trees.

Ben picked and ate lots of cherries.

Grandpa made a special swing for Ben.

It was a great day.

Swimmer!

2011-06-22T00:11:00.000-07:00

Today was Ben's first day of swimming lessons. This is his third year of lessons, but his first as a hearing boy. Last year Ben had both implants, but we took them off and he swam without hearing. He wasn't happy in the water at all. So, this year I did LOTS of research and bought a silicone swim cap and a water proof bag.

We practiced wearing the swim cap around the house for a few days.At the pool, Ben walked around and assessed the situation.He decided he was ready to go in and the work began!

I put his processor in a waterproof bag and folded it up.

Then I tried to get the magnet to connect through the bag. As long as the magnet is connected, he is able to receive sound. It doesn't matter at all where the rest of the contraption is, just the magnet (the circular portion pictured at the top of the bag- technically called the coil). Part of the cap's job is to keep the magnet in place, as long as I can keep it in place AND pull the cap over Ben's head.

He could hear me even with the microphones inside the bag when I stuck it on like this.

The hard part was keeping the magnet in place while I slipped the cap on over the bag and his head. Addilyn looks worried for a reason.

Grandma and I tucked and stretched.

And pulled. Finally, Grandma talked some sense into that cap and we prevailed.

He was off, lookin' as sharp as ever, ready to swim.

The whole time we swam, I asked Ben if he could hear me and he always answered. I did have to talk much louder.

We didn't go underwater, but the cap got pretty wet.

When we got out and uncovered the bag, the outside was wet and the processor on the inside was DRY! Yeah Ben!

As we ate dinner that night Ben said, "Where's tongue?"

Me: "Your tongue? In you mouth."

Ben: "No my tongue. Silly Mommy. The man in the water. Tongue."

Me: "Your swimming teacher? Tom?"

Ben:"Yeah. Tongue. What he doing now?"

I realized I had only talked about TOM, the swimming instructor, while we were in the water- with the swim cap on.

Tongue. Of course.

How else would 'Tom' sound through a waterproof bag, a swim cap, and a cochlear implant?

Silly mommy.

'Never Forget Ems'

2011-05-24T19:17:00.000-07:00

Ben hopped on his firetruck tonight and said, "I go to da store Mommy."

I said, "Why? What are you getting?"

Ben: "Apple juice and teeth."

Me: "Teeth? Why?"

Ben: "Addy no have them."

These are the things I hope I never forget.

Mother's Day X 2

2011-05-08T21:57:00.000-07:00

My first Mother's Day as a mom of two!

I got smiles,

a little sunshine,

and a few beautiful words from my best little boy!

(hard to see him in the dark car-sorry)

Can't beat that!

Easter

2011-04-25T21:08:00.000-07:00

Ben and Addilyn had a great Easter at Grandma Mary's house.

Addilyn wore her fanciest dress.And Ben went hunting for Easter eggs outside.

Ben was thrilled to find an Easter basket filled with books, an airplane, bubbles, noise makers, fruit snacks and delicious marshmellow peeps.

The Easter bunny left Addilyn a book, yummy Gerber peaches, and a new hat in her basket.

Ben enjoyed the stuffing in his basket too.

After a busy day of hunting, ham eating and candy stealing, Ben put on a lovely demonstration of what a two year old, after lots of candy, looks like.

Burbs!

2011-03-16T21:15:00.000-07:00

Ben's latest phrase is: "Oh! Hear dem."

He says it about everything he hears: the door closing, the radio, my squeaky rocking chair, the baby crying, everything.

And every phrase now starts with "Oh!" - "Oh Mommy, Ben hungry", "Oh, Otis barking!" "Oh, whoopie!" (My personal favorite) It is a little word, said with such excitement, in a sweet little tone you can't help but smile.

Today the rain stopped just enough we could go outside for a walk.

Ben kept stopping, pointing and saying, "Oh, Mommy! Hear dem?"

It took me a minute to realize he was hearing birds squawking.

As one flew by I pointed out (with tears in my eyes) and said, "Those are birds. You hear the birds!"

His response: "Oh Mommy! Hear dem burbs!"

and again: "Oh! Burbs!"

"Oh! More burbs!"

I think Addilyn heard dem burbs too!

Snow Day

2011-02-24T15:25:00.000-08:00

We had a snow day today. No school for mommy and lots of time to play.

Ben wasn't quite sure about all this white stuff. Walking in it was super tricky
and a little frustrating.

Frank tried to help.

Daddy made a sled out of a garbage can lid.

I know, we are terrible parents. We live on a hill, with a toddler, get a forecast for snow, and don't buy a sled!The lid didn't work so well.

Even with Frank trying to push.

Throwing sticks and snowballs for Otis was fun.

Sitting on top of Daddy's snowman and watching Daddy throw snowballs at Mommy was even more fun!

Mommy's Helper

2011-02-23T15:58:00.000-08:00

Ben loves his baby sister and loves to help mommy.

Lately he has wanted to hold and feed Addilyn.

He's a hard to understand so I'll translate:

He says: Hi Addilyn, asks for a bottle, then a pacifier.

When neither of those work he asks for help.

Love this kid!

Valentine's Day Mommy's Way

2011-02-14T19:48:00.000-08:00

Valentines Day, to me, is like a Mommy's birthday and Mother's day: She should have whatever she wants without anyone else complaining.

I'm not picky. I just want my family and my choice of food.

This year I chose Sushi (not Adam's favorite food) or, "Doo-di" if you ask Ben.

Ben loved making his own sushi rolls.

First he sampled the rice.

Then, he put the rice on the nori and smashed it down.

A bit more sampling the ingredients and he was ready to roll.

This was difficult because he insisted on lots of carrots in his roll.

The final result:

he picked off the rice, pulled out the carrots and salmon and ate each piece one at a time.

Then he sang Happy Birthday Mommy!

I couldn't have been happier.

Happy Valentine's Day

Gilbert House

2011-02-13T20:41:00.000-08:00

We went to the Gilbert House with Maddie and Auntie Sarah this weekend.

Ben tried milking a cow and picking vegetables.

We had fantastic tea party. Ben served us all "hot tea and moo moos (noodles)".

The grocery shopping was a hit.

He had his thinking tounge out as he filled his cart.

He loved checking out his groceries, but couldn't reach the cash register or scale.

Why does a place designed for children not have any stools?

We knew Ben would love the Bubble Room so we saved it for last.

He made a bubble wall

and almost stood still long enough to make a big bubble all the way around his body.

Addilyn enjoyed this room too!

The highlight of the Bubble Room, however, was the automatic sink

and the doo-dyer (blow dryer) on the wall.

Daddy had to pull him out kicking and screaming, "Doo-dyer. Doo-dyer."

And then he found

the

playground!He went down every slide at least five times!

I had just read an article about the static from plastic slides wiping out the MAPs on kids implants. We hesitated for about 4 seconds and sent him on down. We have back ups for a reason :)

No problems and he had a blast!

Even all by himself!

This playground even had a truck for Ben to drive.
He said, "Ben driving. Wan ice cream cone."

So we went to get ice cream. A perfect way to end a fun day.

About that time Addilyn woke up.

Ben's Baby

2011-01-18T20:42:00.000-08:00

Ben has become quite determined to be "Mommy's hepper (helper)" and make "Annalyn heppy (Addilyn happy)"

Although he is not quite ready to tend to Addilyn, he has taken over full care of "Ben's Baby".

He does all the feedings on his own.

He can even multitask. Tonight Ben decided Baby was ready for her first bath

She got a careful scrub with the washcloth and a rinse.

Baby waited patiently while Ben played with his toys. So nice of her!

Baby needed a warm towel,

clean teeth,

and the "bome" in her hair.

Then, Baby was ready for a story.

A happy Baby and wild Ben were FINALLY ready for bed.

This was quite the process. Although it was super cute, Baby may need to go to bed a little early tomorrow.

"Oh no, Baby's sleeping. Shh."

Two!!!

2011-01-17T18:51:00.000-08:00

Last Thursday Ben turned two. It's hard to believe he is so old already!

Ben's biggest obsession is the phone. He loves to 'talk' on the phone. He walks around chatting, pushing the buttons, taking pictures, and accidentally racking up large Internet fees. He'll beg for your phone, find it in your purse or pocket, and climb on counters, tables and chairs to get a phone. We've even seen him have lengthy conversations on a fork, a banana, and the strap on his car seat.

So, naturally the theme for Ben's birthday party was phones.
I made him a cake shaped like Daddy's phone.

All the work was worth it when Ben pointed and said, "Daddy's pone (phone)!"It didn't taste too bad either.

Ben loved being having Happy Birthday sung to him and requested it be sung again and again.

We re-lit the candles he sang to himself. Super cute!

Ben's friend Aaron helped inspect and try out each of the gifts.

Aunt Jean gave Ben a bubble machine. This really got the party going!

Ben and Aaron showed off their cooking skills in Ben's new kitchen.

We have eaten imaginary cake and lemonade ever since. Ben brings us cups and bowls asking, "Want some?" or "Bite?" And apparently chocolate milk now comes out of the corner of our couch. Who knew? He also insists on washing his hands in 'Ben's sink' before eating.

What a year this has been for Big Ben! He learned to walk, talk, hear, and had a baby sister. He's gained 18 pounds since birth and grown nine inches. I can't wait to see what the next twelve months will bring!

Happy Birthday Big Guy!

Brother and Sister

2010-12-27T15:22:00.000-08:00

My visions of the perfect Christmas picture quickly disappeared the moment I sat these two in the chair.

Poor Addilyn is not very photogenic and Big Ben has decided it is super fun to make Mommy beg for a smile.

Ben loves giving his 'dee dee titter' (baby sister) kisses.She is NOT laughing.I do love Addilyn's gaze at Ben. Already looking up to her big brother. Maybe next year!

Merry Christmas!

Oh, Christmas Tree

2010-12-19T12:40:00.000-08:00

This weekend Ben got his first Christmas tree.

After Daddy cut it down we went inside for some 'nat nellows' (marshmallows), tookies (cookies), and a one-side conversation with a very unfriendly fellow.

The highlight of the trip was a ride on the train.

When we got home Ben helped put on the 'tee tee yeights' (Christmas lights) and the 'balls'.

He is still not sure why the 'tee' is inside.

But hey...

sometimes the strangest things are the most fun!

Gingerbread Cookies

2010-12-17T14:11:00.000-08:00

This morning we made 'tookies'.

Ben loves to add ingredients,

watch the mixer stir,and lick the beater clean.He loved rolling the dough with the 'hammer'

and putting 'milk' on the 'man'.He was very proud of his creation but, completely uninterested in making more than one. Why mess with perfection?
Yum!

Big Brother

2010-12-03T21:33:00.000-08:00

Today Ben met his baby sister Addilyn, for the first time.

He has helped Mommy paint, decorate, and organize the baby's room. But, other than that he is pretty unaware of how much his life is about to change.

The first thing he wanted to do was kiss the baby.

Ben had his first sleep over with Grandma and Grandpa while Mommy and Daddy went to the hospital.

He came and visited us there.

He was so gentle and sweet. I know he will be a fantastic big brother.

Oh.....and....

she passed her Newborn Hearing Screening!

Independence

2010-11-07T11:40:00.000-08:00

We have been a Cochlear Implant family for ten months now. The technology that was so scary, new, and fragile has become as mundane as putting socks on each morning. Ben really has no idea of life without processors, tape, magnets, and remotes.

Just the other day, as we were driving in the car, Ben started shouting from the backseat, "Moo dad-der-y." It took a few guesses and loud "NO"s in response before I landed on new battery. Sure enough Ben's light was orange and a battery was going out.

He has also started replacing his magnets when they fall off. In the past, he would take the whole processor off and give it to us. Now, he can gently reach up and fish around for the magnet to stick.

I can picture the day when Ben's 'ears' will sit on his night stand and he'll stick them into place all on his own when he wakes up each morning- without thinking a second thought.

Pumpkin Patch

2010-10-31T12:34:00.000-07:00

This weekend we went to the pumpkin patch with Auntie Sarah, Cousin Maddie and Uncle Marc. Ben met a cow named Bob.
A Turkey named Tyson.

And a sheep named Chops.

He went down the hay slide with Maddie,

played in the hay with Daddy,

and spent a LONG time digging in the wheat.

Ben helped Maddie pick the perfect pumpkin.

And then....

Ben discovered.....

the

tube

slide!!!

Again and again!

He laughed so hard, tears ran down his face!

It looks like we sent him down by himself (which he would have loved) but he is really trying to go up the slide on his own.

Unfortunately, we had to leave.

When we got back to Grandma's, I asked Ben what he wanted carved into his pumpkin. He said, "O".

Carving an O into a pumpkin is really much harder than it looks.

This was my second try.

Half way through we discovered he really wanted to eat 'O's. As in Cheerio O's.
Oh well. At least it was game day.

2010-10-24T20:29:00.000-07:00

I've had a lot of questions about how Ben has been doing since his second implant. I love the questions and love to give my answer.

"Perfect. We think he's doing really well."

More specifically, Ben is just a 20 month old boy with extra ears. He runs, climbs, tries to jump, dances, loves to sing, and never stops talking. We often forget he's deaf and truly couldn't imagine what he'd be like if he couldn't hear us.

He shouts "touchdown" every time football is on t.v, calls every flat space to put things a "teple" (table), loves to eat "tow an yam" (toast and jam), drags a step ladder throughout the house saying "up da ladda", uses a "teep ne ne" (tape measure) in the car to turn the light above his head on and off, and has long 'conversations' on the 'phone' always ending with "Yeah. Okay. See ya. Bye."

We sing songs in the car, when he's in a bad mood or when he's sad. He shouts out the animal he wants to be on Old MacDonald's Farm and adds in each of the animal sounds though out the song. He 'signs' and sings the "A d ds" (ABCs) with me. Today after a fall, in tearful snuggle he sobbed, "un on mommy." (Sun song, Mommy) This is our go-to feel better song, 'You Are My Sunshine.'

Ben's two favorite phrases are "excuse me" and commanding people "sit down". He'll ask for things by saying, "Wan more appa pus." or "Ben hungry. Wan eat."

He talks in his sleep saying things like "chick n nunnets" (chicken nuggets), "Mommy home", and "vroom vroom."

He announces each time someone enters the room or leaves it, tells you what you're eating or drinking, and verbalizes what you have just done. "Mommy light on." or "Mommy coat on."

He argues, protests, and bargains. He says, "uh oh dado" (uho spagetti-o) when his batteries go dead or a magnet falls off.

Sometimes we have challenges with his 'ears' and at times we have pangs of sadness when he wakes up scared in silence or his 'ear' was accidentally shut off. We do wish every day that he could hear naturally and often wonder what exactly does he hear.

But right now, we are happy, Ben is happy, and that's all that matters. He talks and listens all day long. He's perfect.

Pumpkin Time

2010-10-24T18:04:00.001-07:00

Today we got 'nanans' (pumpkins)!

Ben painted his own pumpkin.

And helped clean out Daddy's pumpkin.

.He loved sorting out the seeds

.and scooping out the guts.

He was excited to stick his fingers in the holes of the pumpkin,

but not convinced this was an eye.

He's saying, "No eye, Mommy. Nannan!"

.He is trying to blow out the candle. Each time he succeeded he'd say, "Light off. Wan light on."

.Blowing the 'light' out again.

Ben loved eating the 'deeds'.

. He doesn't look thrilled, but he actually

pulled his ladder up and chowed down on quite a few seeds.

Just like his Daddy: if it's salty and crunchy, he's eating it.

Dee Nah

2010-10-01T20:55:00.000-07:00

When Daddy's out of town Ben and I get pick what's for 'dee nah' (dinner), no matter how strange it may be.
.

Tonight was one of Ben's all time favorites: rice with cheese and carrots.

He helped puree the cooked carrots.

Then add the cheese,

blend it all together,

and pour it into the bowl.

I didn't get pictures of him stirring in the rice because it took both my hands to keep him from shoveling it into his mouth.

And the final test....

How does it taste?

Good enough to leave the boy who NEVER stops taking speechless!

Beach Trip

2010-09-05T22:13:00.000-07:00

Today we went to the beach and the Oregon Coast Aquarium with Grandma Mary and nine other family members. What a busy day!

Ben's favorite part (besides lunch) was the sand on the beach. At first he refused to step on it and held his feet in the air. Then he moved on to gigantic steps. Finally he sat down threw handfuls of sand in the air. He threw sand up into the wind over and over. He found this to be hilarious. He crawled, rolled, and ran in the sand. Sand was stuck to every part of him.

At one point we noticed he was missing an 'ear'. This caused mas pandemonium for the long 2 minutes it took to back track and find it blinking away in the sand. He spent the rest of his beach time in silence.

I think this picture (thanks to Uncle Steven) sums up my little boy.

He makes a simple, silent, exploration of the world look beautiful.

Where did this amazing little creature come from?

Celebrity

2010-09-03T21:44:00.000-07:00

Ben was featured in a front page article in our local newspaper. The newspaper contacted us way back in December before Ben's first surgery. The reporter and photographer were so interested in Ben's story they joined us on his first surgery day and then again when he was first activated with his right ear. The photographer was even allowed in the operating room, taking pictures of the entire procedure.

Last week they came out to see how life has changed for Ben since his second implant and activation. We thought they did a fantastic job on both articles. The first page actually brought tears to my eyes.

Hope you enjoy!

First article about Ben's surgery:
http://www.itemizerobserver.com/Archives/Story.aspx/16781/moving-past-the-sounds-of-silence

Article about the activation:
http://www.itemizerobserver.com/Archives/Story.aspx/16842/his-door-to-the-world

Most recent article after his second implant:
http://www.itemizerobserver.com/DIONews0.shtml

Books!

2010-08-22T22:40:00.001-07:00

Ben loves to read books.

We read together everyday before nap time and bed time and Ben always has to have a stack to read in the car. We have read a few so many times he knows what comes next before I turn the page.

Here he is reading one of his favorites with Daddy.

This is Moo, Baa. La La La! By Sandra Boynton.

The part he gets a bit carried away with is when the book says, "No, no, no. The pigs say Oink all day and night."

His favorite word lately is mo (no)!

Dancing Man!

2010-08-05T22:02:00.000-07:00

Today went up to Dornbecher to meet with Ben's audiologist.

The whole way up he said " Dtr Don errr" (Doctor Don, ear). Dr. Don was thrilled to his his name over and over.

Ben had a booth test with his 'new ear' and tested at 15 db. Pretty good hearing for a deaf kid! With only the left ear on, he wont respond to questions or repeat a noise.

Don suggested Ben wear only his 'new ear' for a little while each day to give him more confidence and not rely on his right ear. Ben's two ears are at about the same volume now. He just needs more time to exercise the auditory nerve on the left side.

We also talked about the balance troubles Ben has had since his surgery. We will go back in a month and meet with the ENT if it hasn't improved.

When we got home Ben proved he can hear and move around just fine.

These dance moves must come from Daddy!

Enjoy!

Play it over and over! There is no way you can't smile.

Zoo Trip

2010-07-28T21:31:00.001-07:00

Today Ben went to the Zoo.

He loved the elephants. He jumped and giggled saying "ene ana, ene ana".

We had to drag him away from the pigs (iggys).

These penguins knew how to show off. Ben waddled saying "peep, peep, peep".

When we left he waved and said, "Bye, bye ena gena".

Cousin Maddie and Megan made sure Ben got to pet every pygmy goat,

ride each concrete animal

and ride the fake horse.

The left over sugar from this elephant ear may have led to his populatiry in the petting zoo.

This beaver is trying to convince Ben to be a Beaver fan.

But Ben loves his Ducks!

We had a wonderful, long day. Complete with a good-bye hug from a really big bear.

Not So Sure

2010-07-08T23:03:00.000-07:00

Ben's second implant activation was quite a bit different from the first.

He did not want the processor anywhere near his ear or the magnet put on. After some convincing and a lot of distracting, we were able to get the magnet on long enough for Dr. Don to turn the sound on. Ben startled so suddenly the block in his hand flew in my face, leaving a pretty shiner under my eye.

Each time we attached the magnet, so Ben could have some sound, he winced and tried to pull it off. He said "all done" over and over.
.

I didn't have much better luck that evening either. Since Ben wants to be just like daddy all the time, daddy wore his new ear for a while. Ben caved in and wore it for a few moments after that.

The next morning, I held his arms down, stuck his ears on, and headed outside. Ben spent over an hour playing with both ears on!Distract...

distract...

A busy boy with TWO EARS

Today, day 3, has been even better. Ben wore both ears most of the day. At one point, he had only his new ear on. I had to call his name pretty loud before I got a reaction. The sound is still pretty low.

After dinner, Ben took his new ear off and signed hurt and pointed to his head. I'm not sure if the surgery site is sensitive or he was just tired of listening. Either way, it's his choice (or luxury) to turn off the sound and rest for a while.

Lot's of changes for a little guy!

Happy 4th!

2010-07-05T13:51:00.000-07:00

Ben celebrated his Fourth of July in true American style: family, BBQ, and fireworks.

He enjoyed some yummy BBQ ribs,

hanging out by the fire with Grandma Mary,and roasting marshmallows with Daddy.
Ben loved his first roasted marshmallow.

He even tried holding a sparkler. It was a bit scary but super fun.

Bilateral Ben

2010-06-24T21:40:00.000-07:00

Ben had his second Cochlear Implant Surgery yesterday at OHSU. We were lucky this time, because Ben was the Dr.'s first case of the day. Poor little Ben only had to wait an hour and a half for his surgery time. By the time they finally took him, he was starving and terrified of anyone wearing a blue outfit. He gladly said bye bye as we walked him down the hall to the OR. He had no idea what was to come.

We were called back to consult with the surgeon after only 2 hours. He said everything went perfectly. No complications, no gushers, and all the electrodes fired when the audiologist tested the implant!

After another hour and a half we finally got to hold Ben again. He was confused, groggy, and mad. The nurses were insistent on Ben drinking something before going home. But, true to his personality, Ben stuck to his own plan and refused. They let us go home at one o'clock!

Ben slept, puked, and moaned the rest of the day. He was not a happy camper. Later that night, he drank some apple juice and ate one of his favorite peanut butter cookies.

Day 2 has been much better. He woke up this morning with the gauze and head strap around his mouth. It's earlier than recommended to have it off, but we were surprised it lasted that long.

He started holding his head up on his own mid-morning and was able to eat lunch in his high chair.

Overall, Ben's recovery has been better this time around. Our biggest problem is trying to keep him from falling. His balance is terrible but doesn't stop him from continually trying to walk, crawl, and sit on his own. He doesn't want any help and pushes us away.

I dug out Ben's old walker. This gave him some ability to get around on his own. We have even had a few smiles today (and five popsicles. Mom's a sucker!).

Ben's activation will be on July 6th. Soon he will find out how worthwhile these two miserable days have been.

Neigh

2010-06-21T21:13:00.000-07:00

On Wednesday, July 23 (in two days!) Ben will get his second Cochlear Implant.
We are nervous and excited all rolled into one.

We have done lots of reading and research to help guide our decision. Ultimately, we are thinking about Ben's future as a hearing and speaking boy. In this case, having two ears is better than one.

Ben has been talking and listening so much lately. He just loves to listen and mimic sounds people, animals, or objects make. Whenever we get out of the truck Ben says "ep ep ep" along with the beep of the open door.

Today he was waving "die, die" (bye, bye) to Grandma's horses and signing horse at the same time. If you listen closely, he says "neigh, neigh" when I ask him what the horse says. He was at least 20 feet away from me with his back turned!

He hears. It's amazing. I can't wait to hear what he will be saying after 5 months with two ears!

Ga Ka

2010-05-22T09:13:00.000-07:00

I use Ben's blog as a place to save memories. To document his hearing, development, and show off cute pictures.

A blog is a ridiculous place to try to pay tribute to a man like Ben's Grandpa Paul. Our hearts ache for Ben's loss. Without knowing it, he has lost one of his biggest fans, one of his very favorite people, a man that would have loved to play with him for many more years. Ben doesn't feel the sadness, and that's good. But, we see what could have been for Ben and his Ga Ka.

In 16 months, Paul bragged about his Little Ben, supported his parents in some very difficult decisions, and loved his grandson so much you could see it on his face.

He was the first we told when we found out we were pregnant. Paul was back early the next morning with a dozen roses.

He arranged Ben's ABR with the best audiologist at Dornbecher in record timing.

He made sure we had the best ESD audiologist and TOD.

He offered first to hold Ben, so Mommy could finish eating dinner.

When Ben fell in love with his swing at daycare, Paul bought and installed one
at his house. Then spent hours pushing him in it.

He came to our house, lit a fire and made it cozy warm for us when we came home from Ben's surgery.

He fed Ben bit's of ham as he carved it and Ben begged like a puppy at his feet.

He always scooped Ben into his arms as soon as he walked in the door.

He spent countless hours walking with Ben, naming each thing Ben pointed to.

When Ben started crawling and mommy the rule that everyone must take their shoes off, he was the only one that did. Every time.

He commented on and celebrated each milestone Ben made. Little ones, only a Special Ed teacher would notice.

When babysitting Ben, he managed to put Ben's diaper on backwards. Twice.

He filled Ben's Easter basket with his favorite snacks and drinks.

He gave Ben lawnmower rides.

It's impossible to remember or list everything I want Ben to remember. He just needs to know his Grandpa loved him.

Loved him.

And he taught Ben's Daddy how to be just like him.

Bye bye Ga Ka. We love you.

We miss you.

Beach Time

2010-05-16T21:33:00.000-07:00

Today Ben enjoyed his first walk on a windy Oregon beach.

He was more interested in the birds than the waves.

The loose sand was bit scary.

We had to leave after his repeated attempts to introduce himself to a strangers dog.

This is his "If I smile real cute, I can do what I want" face.

Thankfully we are still faster and stronger!

Busy Ben

2010-04-18T21:23:00.000-07:00

Ben helped Mommy and Daddy work outside all weekend.

Always looking for adventure.

He has his stick and he's ready to cut it.

Ready to help.

These two boys are meant for each other!

Daddy's Boy

2010-04-13T21:22:00.001-07:00

Ben was Daddy's little shadow this weekend.

He loved ridding over the bumpy lawn.

Daddy's big helper.

Ben loved spraying himself in the mouth and drinking the water. Yuck!

Truly, all boy!

Moo

2010-04-13T21:07:00.000-07:00

While Ben was eating breakfast the other morning, he looked out the window and saw the neighbors goats. He signed cow and said, "MOOOOO".

Close enough for me!

I was ecstatic.

We just had to go see those 'cows' up close.

Ben brought a treat to share.

Before you give away a treat, it should be tested.

I guess it passed.

Those 'cows' were pretty fun!

Easter

2010-04-06T20:27:00.000-07:00

Ben had a fantastic Easter! He ran all around Grandma and Grandpa's house collecting eggs.

Then he took his eggs out of the basket.

They were hard to open.

But ...horray!

The Easter Bunny filled Ben's eggs with delicious dried fruit.
He ate all of it.

Cousin Maddy showed Ben how to blow bubbles.

Ben tried to catch the bubbles and eat them.

Possible the best part of the day was Grandpa's ham.

Ben parked himself like a little puppy at Grandpa Paul's feet for a pre dinner snack.

Happy Easter!

Three Months Hearing

2010-03-26T21:13:00.000-07:00

Today Ben had another booth test and a MAP adjustment with Dr. Don. In the booth Ben tested at 15 db. That's incredible for a little guy who couldn't hear a thing three months ago!

Don preformed a few language evaluations on Ben also. He was quite impressed.
Some great things noted were:

Consistently responding to familiar and unfamiliar environmental sounds. Such as: the dog barking, a knock at the door, or a beep from a machine.
Responding to his name. (He signed his name each time we said Ben.)
Differentiate between Mom and Dad's voices and turn to the person talking.
Using words/sounds to communicate.
Responding to words when not looking at the speaker. (Don asked if Ben recognized words. I said, "Sure he knows daddy......". From across the room Ben looked up from his toy and signed and said dada.)
Have a change in behavior when the sound to his implant spontaneously goes off. (Ben takes his his ear off and hands it to one of us while whining if his battery goes dead or the magnet slips off.)

According to Don, Ben's language is developing at a quick pace. He is using all the sounds that would be expected from a typical hearing 14 month old.

Ben put on quite the show, playing, talking and signing. His favorite word for today was hep. He asked for hep opening a toy, sitting in a chair, and opening his snacks.

He also looked super smart when he wanted a snack from Don and said "mmm uh" while signing more please. Our little prodigy!

Mommy and Daddy couldn't be prouder!

Oranges

2010-03-24T23:20:00.000-07:00

Great Grandma has an orange tree in her back yard. Ben fell in love.

He picked his first Orange.

He was so excited, he bit into it right away.

But, something was very wrong with this orange.

It tasted awful!

He tried to put it back on the tree.

After much convincing, Ben kept his orange.

Yum!

It was delicious after all!

As soon as he finished, he hopped down and grabbed Great Grandma's finger. He led her out the back door, right back to the orange tree. Over and over!

We came home with at least 20 pounds of Great Grandma's oranges.

Great Grandma Daisy

2010-03-24T22:37:00.000-07:00

We spent last week with Great Grandma Daisy in California. Ben had a wonderful time.

He took Great Grandma on walks
and always used his best manners; signing please, saying ta tu (thank you), and asking for hep (help).

Grandma took Ben, Daddy, Mommy, and Uncle Jon to the Monterey Bay Aquarium.

Ben loved the touch pools,
the penguins,

listening to the sounds of the whales and seals,

and making crayon rubbings of dolphins.

He was a little confused why he couldn't get his pacifier wet in the wave tunnel.

What a fantastic vacation!

Spring

2010-03-08T20:26:00.001-08:00

I have the cutest kid in the world.

Yes, I'm biased. But, take a look and you'll agree!

I pulled out a purple flower for him. He is trying to put it back.

Ben is known for this smile all around town. Really, how can you not smile along with him?

Ben signs 'Daddy'. Definitely his hero.

Grateful

2010-03-01T20:53:00.000-08:00

Ben said "MOMMA"!

Honestly, as far as excitement goes, it's a tie between seeing him for the first time or hearing my name from his little mouth.

Thank you Cochlear!

Sunshine

2010-02-21T16:14:00.001-08:00

Ben spent his weekend exploring the great outdoors.

He tasted a few rocks and picked a flower.

He even wandered over to chat with his good friend Frank.

Ben was determined to help Daddy with some 'Man Work.'

A little trash pick up,

tool sorting, and searching for things to pound.

He finished up his day with a little chicken chasing and spit sharing with the dog.

Ben is becoming quite the 'little boy'. Daddy couldn't be prouder and Mommy couldn't be more nervous!

Happy Valentine's Day!

2010-02-15T20:14:00.000-08:00

We celebrated Valentine's day with a trip to the coast. Ben played in the sun andenjoyed a snack of Pepsi and sticks.
Then he picked out his first pair of walking shoes. He broke them in chasing old ladies through Eddie Bauer.

When we got home the biggest surprise of all was waiting for us...
A glider rocker for Mommy. Now Mommy and Ben can rock the night away in comfort!

Louder

2010-02-06T16:47:00.000-08:00

Yesterday we went back up to visit Dr. Don and have Ben's ear turned up. Ben was given four more programs, each a bit louder than the first.

Next, we went into the hearing booth to see how well Ben is responding to sounds. With Ben on his first program (the quietest) he responded consistently at 20 db!!!!

Take a look at the audiogram. Ben can hear everything above the 20 db line- most speech sounds, even a clock ticking. Not bad considering a month ago he hadn't responded at 90 db!

Ben celebrated his new hearing by spending the day pressing buttons on the phone. He has always loved to carry the phone around, but today he found the beeps quite humorous.

Progress

2010-01-24T12:12:00.000-08:00

Ben has been activated (had the sound turned on in his processor) for 18 days.

We noticed a week or so ago he began acting differently. For a few days, he decreased his usually loud vocalizations and stopped banging with his hammer. We thought he might be hearing the sounds he was making for the first time.

Then miracles happened: he dropped to the ground and turned when we slammed the lid to his toy box. Ben's first startle to sound with his 'new ear'!

Today, Ben turned to his name while he was playing. Super exciting!

Birthday Boy!

2010-01-13T20:55:00.000-08:00

Ben is one today! It's hard to believe we have known him for only a year. He has taught us more than we could have imagined. We are blessed!

January 2009- Twelve hours old

January 2010! Happy Birthday!

At one year Ben:

Loves to eat bananas and oranges

Weighs 20.5 pounds

Still loves his pacifier

Says "Dadadada" and "dabadaba"

Is loud!

Plays with anything he can pound or throw

Hums himself to sleep almost every night

Hates water on his head

Loves his Daddy

Points and smiles at each person we pass in the store

Screams at the vacuum

Drinks his bathwater

Is ticklish everywhere

Throws his food

Cuddles with Mommy

Fights each diaper change

Climbs the stairs

Walks like Frankenstein

Likes to be outside

Is opinionated and strongwilled

Brushes his own hair

Is not a fan of stuffed animals

Tries to feed people

Always wants the phone and remote

Loves peek-a-boo

Smiles all the time

We can't wait to see what the next year will bring!

Activation

2010-01-05T20:11:00.000-08:00

The sound is on!

Dr. Don turned on Ben's sound today. He created four programs for Ben's processor. The first is the quietest and the fourth is the loudest. The audiologists want Ben to slowly get used to sound and not be startled.

In Don's office we tried the first two programs without much of a response. We know, according to Don's computer, sound was going into the electrode.

Once we got home we tried all the programs. We vacuumed, yelled and banged a hammer. Still nothing. The sounds may not be loud enough for Ben to have a big reaction (we don't want that reaction to be tears). Ben needs practice learning what the sound coming in means. We have to teach him how to listen. This is where the Auditory Therapy will come in.

On Friday, Don will turn the sound up once more. Once again we'll have four programs to try out. Maybe then we will have a head turn. I can't wait to stop yelling at my baby.

New Gadgets

2009-12-29T22:56:00.000-08:00

We picked up Ben's new hearing equipment today. It comes in a fancy case that weighs more than Ben. As a bonus, kids get a super cute Koala (Cochlear equipment is made in Australia) with a toy processor Velcroed to it's head.
Dr. Don wants Ben to practice wearing his processor before it is activated. Mom and Dad need to practice putting it on over and over. We have tried several different options so far, but this kid is quick.

He can wear the entire processor on his ear like this:

Or we can take the battery pack off the back, attach a longer cord, and clip it to his body. This makes the portion that sits behind his ear shorter.

So far this, along with some tape, has worked best (staying on for the record of 30 seconds). Otherwise, each time he turns his head the bottom of the Behind The Ear brushes off on his shoulder. These things must have been designed for a kid with a neck. Hmmm...

We have some other options to try tomorrow. He is stubborn, but I think that may be something he inherited?

Little Trooper

2009-12-25T10:26:00.000-08:00

Ben began his big day, December 23, at OHSU at 7:00 am. He won the hearts of all the nurses as he played and waited 3 hours for his surgery time.

After 4 hours of surgery and recovery, we were able to see him again. He had had trouble breathing and needed to be monitored a bit longer than usual. Hospital policy requires babies to eat before they are discharged. Ben refused. Reluctantly, after 12 hours in the hospital, we headed for home.

He finally ate at three the next morning and again at 8:00. Each time he generously shared his food by projecting it out and down the front of Daddy.

He perked up for his first Christmas eve at Grandma and Grandpa's.

This is his scar on day two. It's hard to see but the stitches actually go all the way around to the bottom of his ear. To the left of the stitches is a small dot. Under the dot is the internal magnet and processor.

By Christmas day, 48 hours after surgery, he was playing, eating and smiling. He is wobbly and has a hard time crawling, standing, and sitting up on his own. We have been told his balance will improve over time.

Overall, we have been impressed with Ben's recovery. Ten more days and he will be hearing for the first time in his right ear! He is quite the 'Little Trooper'.

2009-12-11T20:51:00.000-08:00

This past week we spent another long day at Doernbecher. Ben was assessed by Speech Pathologist and a Cognitive Specialist. Their goal was to determine a baseline for Ben's language skills before he receives his implant. We will go back in a year and they will measure Ben's progress.

They were most impressed with Ben's signing. He will sign about 6 signs consistently. After a few minutes of torture in his highchair, I was able to record a few of Ben's favorites.

Ben signs Daddy ALL THE TIME.

This boy is all about food. He signs 'milk' when he wants a drink and throughout the day whenever he wants anything. 'More' and 'cracker' are his newest signs. Here he does both.

'Thank you' must be the cutest sign of all. Instead of tapping his chin he dramatically smacks his face.

The real heart breaker is when I rock him back to sleep in the middle of the night and he groggily signs 'mommy' over and over. I'd get up twice for that one.

We Have a Date!!!!

2009-11-30T15:51:00.000-08:00

It's official:

DECEMBER 23!

Insurance approved and we are ready. Ben will have is pre-op next week and then we wait!

Yahoo!

First Thanksgiving

2009-11-29T19:00:00.000-08:00

Ben's first Thanksgiving weekend was full of adventures.

Including.....

tasting and loving pumpkin pie,

wearing Grandpa's hat,
hanging out with the Grandmas,

helping Daddy with the new addition,

sorting Mommy's Tupperware,

and finding Daddy outside.

Ben also discovered what happens to rolls of toilet paper when they are put in the toilet, how fast Mommy moves when you shove moss in your mouth, and exactly what a dog's tongue tastes like.

Somehow I didn't manage to get pictures of those.

Choices

2009-11-23T20:13:00.000-08:00

This past week we met up with Don at OHSU to talk about Ben's up coming implant. (For a brief review of what a cochlear implant is check out this earlier blog: MRI and CT.)

We discussed our options for which brand of implant Ben will be getting. The choices include Cochlear's Nucleus 5, MED-EL's Sonata, and Advanced Bionic's Harmony. After lots of debating, we chose the Nucleus 5.

The Nucleus 5 has the slimmest processor available and has some wearing options perfect (hopefully) for a little guy.

He can wear the processor on his ear and the battery pack (the portion at the bottom of this picture) clipped to his shirt. My hope is this will make the whole contraption slightly less easier to loose.

When his ears get bigger, he can wear the battery and processor on his ear.

It even has a remote with a full-color display so we will be able to wirelessly monitor and manage Ben's hearing.

Part of our visit included a hearing test. I held Ben in a sound proof booth while an intern distracted him with a toy. Don plugged Ben's ear with a device through which he pumped in sound at various decibels. Ben's job was to turn to a moving toy each time he heard the sound.

It took a few tries, but Ben soon caught on.

Unfortunately, Ben wasn't responding as well as he previously had in his left (good) ear. We know Ben's hearing loss will progress at some point. That time may be now. We can adjust his hearing aids, do some more tests, and maybe someday implant the left ear as well. We aren't as disappointed as we thought we would be; The implant date is coming so fast.

Oh...did I forget to mention? DECEMBER 23! We are just waiting on insurance approval. Keep your fingers crossed!

Lion King

2009-11-01T20:36:00.000-08:00

Happy Halloween!

Perfect Pumpkin

2009-10-31T22:24:00.001-07:00

Ben finally got to pick his pumpkin from our garden.

Pumpkin stems do not taste good!

But they are fun to carry.

Pumpkins, mud, flannel, and rubber boots... It must be fall.

P.S Rubber boots are HARD to put on a baby.

Farmer Ben

2009-10-05T21:12:00.000-07:00

Ben loves feeding apples to Frank.

He tries so hard to stand on his own.

But, it doesn't last long. He came up smiling with bits of grass stuck in his two tiny teeth.

Racing Grandma!

2009-09-27T20:39:00.000-07:00

It's hard to tell who has the coolest wheels!

One Year Ago Today!

2009-09-26T12:34:00.000-07:00

One year ago today I went in for my final ultrasound and to find out if we were having a boy or a girl. Adam had been talking a bout his son for weeks and kept asking me how his boy was doing. He told everyone he'd be happy with a boy or a girl, but we all knew he hoped for a son.

The ultrasound technician looked at Ben's heart, bones, stomach, hands, feet, and brain. She took her time taking pictures and making sure he was healthy.

Out of the blue, she said, "It's a boy!" Adam leaped out of his chair, raised both arms in the air and shouted "YEAH!" It was like his team scored a Touch Down in overtime at the Super Bowl.

Our team definitely won this time!

Ahoy!

2009-08-31T20:38:00.000-07:00

This past weekend we joined Grandma and Grandpa on their sailing trip in the San Juan Islands.

Ben helped Daddy and Grandpa steer the sailboat.

A good sailor always has a snack close at hand.

Ben also tried out his sea legs on Uncle Peter and Aunt Gerry's boat.

Tasting the wheel is an old Captain's trick for ensuring your crews safety.

Arr!

Favorite Sounds

2009-08-24T22:23:00.000-07:00

Ben loves to blow raspberries.

All through the grocery store, car rides, in restaurants, on walks, in the swimming pool, to little old ladies at the retirement center, in bed at 4 in the morning ....everywhere.

Not always polite, but SUPER cute!

Crawling?

2009-08-08T20:50:00.000-07:00

Ben's on the move!

It's kind of a crawl, scoot, and drag with a half roll.

Definitely an A+ for effort!

He couldn't be happier with himself.

Cousin Maddie

2009-07-19T21:41:00.000-07:00

Ben spent a fun Saturday playing with his Cousin Madison.

She took Ben on his first ride down the slide

and pushed him in the swing.

Over and over.

Ben LOVES his swing and his Cousin Maddie!

Daddy's Big Helper

2009-07-18T12:34:00.000-07:00

This weekend Ben helped Daddy drive an excavator.

First they discussed the job.

Then, Ben learned exactly which controllers to use.

Finally, Daddy showed Ben how to play in the dirt.

Two happy boys with one big toy!

Garden Helper

2009-07-14T22:08:00.000-07:00

Ben loves to help in the garden. Today we picked green beans.

Well... he picked a green bean.

A lesson in Genetics...

2009-07-13T20:20:00.000-07:00

Today from the Genetic Counselors at OHSU called. The results of Ben's genetic testing had arrived.

Ben was tested for an autosomal recessive disorder called Pendred Syndrome. Autosomal recessive is one of several ways that a trait, disorder, or disease can be passed down through families. An autosomal recessive disorder means two copies of an abnormal gene must be present in order for the disease or trait to develop. A mutation in a gene on one of the first 22 nonsex chromosomes can lead to an autosomal disorder.

Genes come in pairs. Recessive inheritance means both genes in a pair must be defective to cause disease. People with only one defective gene in the pair are considered carriers. However, they can pass the abnormal gene to their children.To have an autosomal recessive disorder two copies of the gene must be mutated for a person to be affected. One copy comes from the mother and the other from the father. The parents are usually unaffected and unknowingly each carry a single copy of the mutated gene (and are referred to as carriers).

If both parents are carriers, there is a 25% chance of a child inheriting both abnormal genes and, consequently, developing the disease or syndrome. There is a 50% chance of a child inheriting only one abnormal gene and of being a carrier, like the parents, and there is a 25% chance of the child inheriting both normal genes.

The results from Ben's tests show he has two mutated genes, what is expected with someone affected by an autosomal recessive disorder. One of the mutations is to a gene known as SLC26A4 on chromosome 7, which causes Pendred Syndrome. The other is a mutation that has not been seen before. The results stated the exact mutation is unclear.

Because Pendred syndrome is a recessive trait, a child needs to inherit two mutated SLC26A4 genes—one from each parent—to have Pendred syndrome. This means Ben's diagnosis is still a bit unclear. To determine if Ben truly has Pendred's both parents need to be tested to see if we are carries of the mutated gene. If we are carries, it is possible Ben has Pendred's with a mutation that has not yet been documented. Lucky Ben!

It is important to us to determine whether or not Ben has Pendred's because it can cause some other complications for him as he grows older. Mostly, we will need to monitor his thyroid as he enters puberty. He may also develop some balance issues as he begins to try to walk.

All in all, the answer is good for Ben and good for us. It's a bit strange, in a way, to think that people can carry this mutated gene around unknowingly. If they have a child, that child may or may not be affected. It may never surface. But then again, it just might. Lucky, lucky Ben!

Sedated ABR

2009-06-22T20:30:00.000-07:00

This week Ben had his first sedated ABR (Auditory Brainstem Response). The ABR evaluates how well sounds travel along the hearing nerve pathways from the ear to the brainstem (i.e how well he hears).

The ABR monitors changes in brain activity as repetitive clicking sounds are sent through the ear. The audiologist places four small stickers on Ben's head, chest, and ear lobes, connected to leads going into a computer. Sounds are be sent through an earphone to each ear separately while a computer analyzes the changes in the brain wave pattern in response to sounds.

In order for the results to be accurate, the brain needs to be relaxed. When Ben was younger, he was able to sleep peacefully for the ABR. Each time he would twitch or suck on his pacifier, we would see a change in his brain waves on the computer screen. Now, to have Ben's brain relaxed enough and for long enough, he needs to be sedated.

Ben doesn't mind the process at all- except that we had to starve him for 6 hours before the sedation. Nurses put numbing cream on his skin in several places so the I.V wont hurt as much.

A Sedation team administers the medication and Ben falls peacefully asleep. The hospital wont allow parents to stay with their children once they are fully sedated. Mom and dad have a few hours to wonder, eat and worry.

According to the ABR, Ben's hearing has not changed since his last ABR three months ago. We had a small bit of hope (or wishful dreaming) that his hearing would have improved somehow. But, we are also glad to have the left ear working just as strong. We know that with EVA
hearing loss is progressive. We would hate to have the hearing he currently has decline before he is implanted. In this case, December seems so far away.

Water Fun!

2009-05-31T20:05:00.000-07:00

Ben loves his bath. He splashes, gurgles, and tries to eat the wash cloth. But, he can't hear any of it because he has to have is hearing aids off.

So....we had some water fun outside.

Some splashing, no gurgling.

Ben spent most of his time looking at his feet.

I guess toes in the water look different with hearing aids on.

Don't worry Nadine. The aids are in the dryer tonight :)

One Step Closer

2009-05-26T20:49:00.000-07:00

This week we headed up to OHSU to meet with their Genetic Counselors. Our goal is to find the cause of Ben's hearing loss.

After giving our family history (no congenital hearing loss on either side), Ben was given a physical exam. He is right on track with his growth and is meeting all the age appropriate developmental markers. We told the counselors about Ben's ABRs and how his MRI and CT scans were normal.

That's where we were stopped short. The counselors had reports from the scans we had not yet seen. Apparently, Ben's MRI and CT scans were not normal. The doctor noted that Ben has enlarged vestibular aqueducts.

So, what does that mean? It's hard to explain, and we are still learning, but this is what we know so far:

Vestibular aqueducts are narrow, bony canals that travel from the inner ear to deep inside the skull. The aqueducts begin inside the temporal bone, the part of the skull just above the ear.

A vestibular aqueduct is considered enlarged if it is greater than 1.5 millimeters in size, roughly the diameter of the head of a pin.

Scientists also are finding that five to 15 percent of children with sensorineural hearing loss, or hearing loss caused by damage to sensory cells inside the cochlea, have EVA.

The presence of EVA can be a symptom of a genetic disorder called Pendred syndrome, a cause of childhood hearing loss. Approximately one-third of individuals with EVA and hearing loss have Pendred syndrome. With Pendred syndrome, the hearing loss is progressive, which means that a Ben could have less hearing over time.

EVA may also be linked with balance problems.

No treatment has proven effective in reducing the hearing loss associated with EVA or in slowing its progression.

Through my many hours Googleing and reading posts on my favorite cochlear implant connection, cicircle yahoo group, I have found that quite a few kids have EVA and receive cochlear implants. Whew! Although there can be some extra complications, implantation is possible.

After letting our new discoveries sink in for a bit, we are actually relieved. Often, children with congenital hearing loss have other physical or developmental challenges that surface as the child ages. With the findings of the EVA we can let many of our fears go.

Our next step is to have Genetics counselors at OHSU test Ben for Pendred Syndrome. We'll worry about that when the time comes.

Let the games begin!

2009-05-17T20:26:00.000-07:00

Look what Ben found!

These things are so cool!

And tasty?

Mom has her own plan!

Salem Heights

2009-05-14T11:00:00.000-07:00

This week I had the opportunity to visit Salem Heights Elementary School. This is where deaf and hard of hearing children in three local counties are able to come together for mainstream education. The school provides sign language services and speech and language therapy specific to the kid's needs. My mom actually taught kindergarten there several years ago.

Quite a few of the kids at Salem Heights have hearing aids or Cochlear implants. I met with several kids who were excited to tell me all about their implants. They took off their processors and coils, proudly showing me how they hear. To these boys, Cochlear Implants and hearing aids are just a part of their lives. As natural as the shoes we put on each day.

I had conversations and played games with children who were deaf, just like Ben. It was enlightening to have a vision into Ben's future. I could picture him giggling with a group of boys or arguing over the rules of a game.

I brought a book about Ben's first day with his hearing aids to show the kids. One fifth grade boy, with an implant and a hearing aid, carefully read through each page of the book. He finished reading and said:

"What is your baby's name?"

"Ben"

"Is Ben going to get an implant too?"

"Yes. I think so."

"He will say: Thank you Mommy for letting me hear."

"Really?"

"He will say it was the best day of his life."

I smiled the whole way home. My baby has such a bright future.

HB 2589

2009-04-23T11:39:00.000-07:00

I just heard that HB 2589, the children's hearing aid bill, will be headed to the House floor with bipartisan support from the Health Care Committee. Only one member of the committee voted no, Ron Maurer, and it was noted that he very rarely supports mandates. This is great news! Within the next week or two, we should find out when the bill is likely to be up for a vote of the full House.

Anyone who is interested in contacting their state representative and urging his or her support of the bill is welcome to do so.

To find your representative:
http://www.leg.state.or.us/findlegsltr/home.htm

Scroll down to State Representative and the phone and email for your representative will be listed.

Thank you very much!

Growing Pains

2009-04-15T10:37:00.000-07:00

Our little boy is growing up! He weighs almost 12 pounds and has grown three inches since birth! (If you know our family, you will understand how remarkable this height growth is!) He has outgrown his newborn clothes, rolls from tummy to back and back to tummy, holds his head up, and has even had his first cold- A true sign of childhood.

Ben's ears are growing at a rapid pace as well. He is already on his third set of ear molds, the soft plastic portion of his hearing aid that sits inside his ear. Ben's audiologist makes impressions of his ears and sends them to a factory. In two weeks ear molds return. Ear molds that are already too small for Ben's growing ears!

The microphone, on the top of the hearing aid, picks up sounds and sends them to an amplifier that makes them louder. After sounds are made louder, they go through the earhook to an ear mold. The ear mold's job is to hold the sound inside Ben's ear.

Since Ben's ear molds don't fit tightly, the sound leaks out- feedback. If you have ever been near a person whose hearing aids squeal, they have poor fitting ear molds. Ben's sound like bees buzzing around is head. Sometimes I can hear my voice coming from his ear...kinda creepy.

Here he is rolling like a champ! As he rolls, he loosens the ear mold. Ah, feedback!

Ben Practices Politics

2009-04-11T11:12:00.000-07:00

We first learned Ben had a hearing loss through the Newborn Infant Hearing Screening. Since 1999, when the Hearing Screening began, hearing loss has been found to effect 1 in 22 infants. Oregon mandated the Hearing Screening as a way to insure early identification of hearing loss. Early identification and intervention can prevent psychosocial, educational, and linguistic repercussions. Infants who are not identified before 6 months of age have delays in speech and language development. Intervention at or before 6 months of age allows a child with impaired hearing to develop normal speech and language. However, when it comes to interventions, often times hearing aids, health insurance companies lack support.

At more than $3,000 apiece for hearing aids and no help from insurance, many families are forced to make financial sacrifices or have their child go without hearing aids. Unfortunately, the identification of a child's hearing loss becomes a financial burden. Families become aware their child needs hearing aids, but are left without means for attaining them.

The issue of hearing aid insurance is heating up, and several states are responding with bills to require coverage of hearing aids for some people. This Friday House Bill 2589 was proposed to the House Committee on Health Care at the Oregon State Capital. The passing of this bill would require insurance companies to pay a portion of pediatric hearing aids.

Ben and I attended the committee meeting, along with several experts in the field of pediatric hearing loss. Ben did a fantastic job modeling his hearing aids for the committee while I told our story. Hopefully we tugged at some heart strings. This is what I said:

Finding out your baby is deaf is like being hit with a pile of bricks. Invisible bricks. He was warm and soft and snuggled in my arms. He looked perfect. How could something be wrong? But, at twelve hours old, I was told he failed his hearing test. Impossible. The nurses must have botched the test. But still, through the denial, I felt pain coming from somewhere.

At two weeks old, we took our baby to get another hearing test. He failed. The dull, throbbing pain of those invisible bricks returned. I could have sworn he flinched when we banged the pots and pans over his head desperately tying to perform our own hearing tests.

After a visit to an ENT, a different audiologist, and two more hearing tests we had our answer. Our son is deaf. All the “I love you” whispers and lullaby tunes had truly gone unheard. He’ll really never know my voice? The bricks pushed so hard I couldn’t breathe. That long, deep exhale of relaxed contentment, of a world full of bright futures and sunny skies that exists in the world of our son were crushed by the dark news of which I had just heard.

I’m his mother. My job is to fix what goes wrong in his world. I hung on the glimmer of hope provided by the audiologist: “He may be able to hear some sounds with a hearing aid.” Hearing aids would be the answer. I knew it.

I researched and found that with my son’s severe loss, he would need high powered hearing aids. Expensive hearing aids. Our insurance doesn’t cover hearing aids. We couldn’t deny our child a chance to hear. Sacrifices could be made. We have a car we no longer drive. Someone might buy it. My husband could work longer hours. I could cut my maternity leave short. Those bricks grew heavier.

We were lucky. Blessed. The Willamette ESD loaned us hearing aids to see if our son responded to sound. On April 1st, at 9 weeks old, my son tried on his first pair of hearing aids. As we snapped the battery door shut, we held our breath. I didn’t know what to say.

“Ben it’s mommy.” He opened his eyes. He looked at my face. He heard my voice.

My son wears his hearing aids whenever he is awake. He smiles more. He enjoys Patty Cake, and Twinkle Twinkle. We listen to Mozart. I can soothe him with my voice when he cries and he hears my goodnight whispers.

If we were not able to borrow hearing aids, my child would be missing these sounds. Soon we will need to buy Ben his own pair of hearing aids. Unfortunately, the high cost of the hearing aids creates a barrier for families like ours. Our insurance does not cover any of the expenses associated with hearing aids. Sacrifices will need to be made. It is not fair that Ben should have to get less expensive, less effective hearing aids, or our family have financial constraints.

We pay for health insurance to cover our family’s medical needs. My child’s eyesight is covered. Why not his hearing? Should he be denied the opportunity to attend regular education classes, develop normal speech, and listen to Mozart?

MRI and CT

2009-04-03T19:49:00.000-07:00

Today we spent a long day at OHSU. We arrived at 7 am to have Ben sedated for a MRI and a CT. The nurses began by putting a cream on Ben's hand and feet to numb the skin over his entire body. After forty minutes, the cream worked and Ben was ready for his IV. He was dressed in a hospital gown, given a light sedation medication, hooked up to a blood pressure monitor, and given oxygen. Once he was fully sedated, the nurses wheeled him away for the scans. In an hour and a half a groggy little boy returned. He took a long time waking up and orienting himself.

We also met with Dr. McMenomey, OHSU's cochlear implant surgeon. He has preformed over 1,000 implant surgeries and averages around sixty each year on children. Dr.McMenomy feels very strongly that a child should be around a year old before getting an implant. After learning more about the surgery itself, we agreed.

The actual surgery takes 2 to 4 hours, a long time for babies to be sedated. It involves securing the receiver/stimulator under the skin and inside the skull, and then threading the wires containing the electrodes into the spirals of the cochlea. The internal portion of the implant includes a strong magnent for ataching the external portion.

To secure the receiver/stimulator, the surgeon first makes a small depression in the temporal bone (the skull bone that contains part of the ear canal, the middle ear, and the inner ear). Next, he opens up the mastoid bone behind the ear to allow access to the middle ear. Then, a small hole is drilled in the cochlea and the wires containing the electrodes are inserted. The implant is then secured and the incision is closed. Swelling is minimized by applying a pressure bandage. Babies usually need to stay over night, but adults can go home the same day.

Two to four weeks after surgery, the sound and speech processor is matched with the implant and is programmed and fine-tuned to meet the child's individual hearing needs (This is the portion of the implant you see on the outside of the head.).

After reviewing Ben's scans, Dr. McMenomy feels Ben is a perfect candidate for a cochlear implant! This means Ben could be implanted before Christmas and hearing before his first birthday. What great gifts!

Ben can hear!

2009-04-01T21:13:00.000-07:00

Today Ben got his hearing aids!

Ben was asleep while his dad put on the first hearing aid in his left ear. When he closed the battery door and turned the aid on, Ben's eyes opened. He looked around the room with wide eyes. He kept looking to left to find where the sound was coming from. It was wonderful! Our little boy heard our voices for the first time!

Look at those smiles!

He loves to hear!

Beginning the Process

2009-03-19T10:54:00.000-07:00

On Tuesday we met with the coordinator at the CDRC Pediatric Hearing Amplification Service at Doernbecher Children’s Hospital. This is our first step in beginning the process to determine if Ben is a candidate for a Cochlear Implant. Just because he is deaf does not automatically make an implant possible. He will need to undergo several tests to determine the cause of his deafness and to be certain an implant will be effective.

The first test Ben will need is a CAT scan (x-ray) and MRI of the inner ear. These will show the condition of the cochlea and the auditory nerve. The doctor will be looking to see if the cochlea has any ossification (bony growth) or is malformed. Neither of these conditions would prevent an implant, but may determine how well the implant will work or be a deciding factor of which ear to implant. Though the implant is placed within the cochlea, sound must be transmitted to the brain via the auditory nerve. If this nerve is not intact or is not present, the implant will not be possible in that ear. Ben will have his MRI and CAT scan on April 3rd.

We also discussed possible causes for Ben’s deafness. Unfortunately, congenital deafness can be one of the symptoms of a syndrome, with other symptoms showing up later in life. The doctor suggested our first step be genetic counseling. A very common cause of congenital deafness is a genetic condition called Connexin 26. Connexin kids tend to do very well with cochlear implants. Their hearing anatomy is all present and intact. The only problem is that the hair cells along the basilar membrane, which translate mechanical sound energy into nerve impulses, are defective, due to a lack of Connexin protein. Finding out Ben has Connexin 26 would be positive.

When Ben is older, around six or seven months, he will undergo some cognitive testing. These tests will be used to help determine the possible results of the implant. If Ben has developmental delays, speech and language may be harder for him to grasp, even with an implant.

Doernbecher Hospital performed about 55 implants last year. All of those parents went though this process. All of those parents survived. All of those kids are now hearing. We are riding on the optimism they provide.

Happy Bear

2009-03-17T16:08:00.000-07:00

Ben's Aunt Joy went on a mission to find a toy a deaf baby would enjoy. She hit the jackpot with the "Happy Bear". The flashing lights on it's tummy keep Ben starring for minutes (hours in baby time!).

Well, come to find out, Ben can enjoy the songs of the "Happy Bear" also. Last night we put the speaker of the bear next to Ben's left ear (the better ear). I think he hears it! What do you think?

What is a Cochlear Implant?

2009-03-09T19:04:00.000-07:00

A Cochlear Implant opens up a whole new batch of questions. What exactly does a Cochlear implant do? Does it fix his deafness? What does "activated" mean? Will he wear something noticeable?

A little of what we learned....

Ben will always be deaf. The implant is like a more powerful hearing aid, although it is very different from a hearing aid. Instead of simply amplifying sound, it creates signals that the brain interprets as sound, making it ideal for people who have little or no hearing. Cochlear implants use a device called an external speech processor, worn outside the ear, to capture sound and convert the sound into digital signals. Those signals are then sent to a surgically implanted electronic receiver inside the head, which tells the implant to stimulate the electrodes inside the cochlea (inner ear). The brain then recognizes these signals as sound. Those that are qualified for an implant must have a certain degree of hearing loss (meaning "bad") and not get any use out of a hearing aid. I used to see a person with hearing aids and ask myself, "Why don't they just get that surgery done to 'fix' their hearing." I now know that most that wear the hearing aids, get enough sound from them, so that there is no need for an implant. Ben's left ear may be like that.

Normal hearing is about 10-20 decibels. Ben is considered profoundly deaf in the right ear, hearing between 90 and 110 dB (depending on the frequency, meaning high pitch sounds vs. low pitch sounds). He is severe in the left, hearing between 70 and 90 dB.

The Cochlear Implant surgery can only be done after Ben is 12 months old and has worn hearing aids for six months. He has to show no benefit from the aids. We hope he will have good hearing with the aid in the left side, meaning Ben will most likely only qualify for an implant in the right ear. The implant is not simple-- it has an inner device that has to be surgically implanted. He wouldn't hear with just that, he would have to attach the outer device-also called the processor (it is a magnet that attaches to the magnet on the inner device) in order to receive sound. So at night or in water, when we would take the processor off, he wouldn't hear anything.

"Activated" basically means "turned on" or "hooked up". Ben would be activated several weeks after the implant surgery. At that appointment he would receive the processor and will begin hearing in "surround sound!" :)

Here are some pictures for you to see what the implant looks like.

This is what is implanted inside...

This is the speech processor that is seen on the outside...

Isn't technology amazing!

Special Education

2009-03-08T19:48:00.000-07:00

As a teacher, I am familiar with Special Education. I have often said, "Why would a parent be resistant of an education plan specifically tailored to their child's needs?" But, now I am on the other side of the table. My child needs Special Education. As we checked the boxes and signed our names, a small twinge of panic went through me. Emily Perl Kingsley explained my feelings well.

It's like going to Holland...

"When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful vacation plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very, very exciting!

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."

"Holland??" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a while new group of people that you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you have been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

We will go to Italy. A change of flight plans will not stop our family.

Questions

2009-03-06T17:22:00.000-08:00

It's been amazing to see people come out of the wood work with support. Just days after Ben's diagnosis, he had a team of people with ideas and previous experience with babies like him eager to help. We have been filled with confidence that he will hear soon.

Today we met with a good friend of Grandpa Paul. She is a Pediactric Audiologist at the ESD, where Paul works. We want to understand Ben's hearing loss and learn about the options for his hearing.

We have researched Cochlear Implants and hearing aids. Our hope, boosted greatly by our meeting, is that Ben will have normal hearing in his left ear with the use of a hearing aid.

We made ear molds and orderd hearing aids. April first cannot come fast enough!

Diagnosis

2009-02-24T15:20:00.000-08:00

How did we find out?
Ben was born on January 13, 2009. It was a terrific day -- everything went smoothly, and I was so thrilled to hold him in my arms.

That night, he was given a newborn hearing screening. He failed. Strictly speaking, he was "referred" -- meaning that the machine showed no response and he would need follow-up testing. (They don't like to call it "failure".) The nurses assured us that there was nothing to worry about. He might still have some gunk in his ears from birth. He probably squirmed and disconnected the electrodes. We had plenty of other things on our minds and we were more than willing to believe their assurances, so we took their advice and didn't worry.

The next night, they tested him again, and again he was "referred". Again they told us not to worry, but we asked my doctor, every nurse, and the on-call pediatrition for advice. I made an appointment with an audiologist for more testing. In the meantime, we performed our own hearing 'tests' by clapping and banging pots and pans over his head. We tried to convince ourselves he was responding.

At the audiologist's, Ben took a test called an ABR (auditory brainstem response test). He had to sleep for three hours while the test was preformed. Once again, no response. But, we were told Ben's ear canals were collapsed and it was probably nothing to worry about. They might 'pop' back in a few weeks. We should come back then.

I didn't want to wait. I took Ben to an ENT the next week. He insisted his canals were not collapsed. This was not the problem. By now, we were no longer in denial. We knew something was wrong.

At this point it seemed like Ben had some sort of hearing loss. We went to OHSU for a more comprehensive ABR. After two visits, six hours of sleeping, and two long tests we had our answer.

It wasn't good news.

We found that Ben is profoundly deaf in his right ear, and severely-to-profoundly deaf in his left.

We knew he was deaf, but to have it confirmed and to have it be so bad....

We drove home in silence, both thinking the same thing: some how Ben will hear.