Progress

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!

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

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

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

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'.

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!!!!

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

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

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

Happy Halloween!

Perfect Pumpkin

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

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!

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

One Year Ago Today!

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!

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

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?

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.