One Month of Hearing!

It's been one month since Everly's activation.  As you can imagine, her world has exploded! In the first weeks after activation, Everly has shown a lot of different and new reactions to voices and sounds. We have been diligent in our observations as to which sounds elicit a happy or curious reaction and which sounds startle her. It's amazing the difference we have seen in just one month. Everly definitely responds to Cooper's barking, clapping, knocking, singing and playing the piano. In the last week or so, she's really starting to respond to our talking voices.  It can be confusing for her to differentiate between new sounds, voices and noises in these beginning stages. She hears better and responds more in a quiet room without too much background noise.

On Friday, we had another mapping session with her audiologist at USC. They tested her current settings and made some adjustments to her programming. She did remarkably well. No tears this time! Well, I had some tears but that's a normal occurrence for me these days :) We were told that Everly has access to hear most of our speech sounds. She did not respond to the softest and highest frequency speech tones but we believe she has access to hear those sounds and didn't respond because she doesn't recognize them as sounds yet.  That's where the therapy comes in.

Below is a video of her one month mapping session. You can see her clearly responding to the beeps. It may not look like much but this is an immense improvement from just one month ago.

We couldn't be happier with her results thus far. I can't even imagine how she's going to impress us in the future. I can't wait.

Everly's hearing birthday!

Wow what a week it has been! Everly's Cochlear Implants were activated this week starting on Tuesday, April 21st. This will be considered her hearing birthday and a day we will never forget. Everly was such a trooper. I can't imagine how scary it must be to hear sound for the first time. When the implants were activated, she cried most of the time which is a normal and good reaction. It meant that the cochlear implants were working. We went back two additional times so the audiologist could continue to adjust the programming/mapping. It's more complicated than this, but essentially she turned up the implants each time. We needed to make sure Everly was comfortable, not in pain, and could tolerate the mapping. Everly had no tears the second and third day. It's amazing how she learned to tolerate her new sense so quickly. By the third day, she definitely reacted to the testing the audiologist did. It was amazing.

Although Everly is 10 months old, her ears are that of a newborn. Think about what you expect a newborn to hear. Not a lot. Newborns don't know their names; they don't know their mother's, father's or sibling's voices; they don't turn toward a sound; there's no meaning attached to any sound. Most newborns can sleep soundly in a noisy room. It's a little bit of a hard concept for me to comprehend. It seems as if Everly should know her name, should know my voice, but she has only reacted to a couple sounds thus far. Of course this will all come in time. We resume all of our therapy next week. I am looking forward to getting back to our routine, albeit a busy one.

Thank you to everyone for all of the positive thoughts throughout this period in our lives. We couldn't have done it without all the support we received. And a special shout-out to the grandparents, as they were with us every step of the way.

First reaction of her new sense...

1st activation day

 

All hooked up with her new equipment

 

It's been a long morning but she;s still happy

 

The grandmas singing to Everly

 

 

Everly's hearing birthday is a day will we never forget!

 

At home after activation playing with brother Brooks

 

Reading books is so different now!

 

2nd activation day with our audiologist, Jamie. No tears today!

 

Playing while testing my new magic ears.

 

3rd activation day. Trying the second device that goes behind the ear. She will eventually wear this one when she gets older.

 

More testing...

 

Lots of wires and equipment!

 

Finally we are finished...at least for now! With our audiologist, Jamie.

 

 

On the way home...we spent a lot of time in the car this week. 

 

My new head gear.  I think she looks like a cute little bug now!

 

Playing with Brooks and using her voice!

 

She reacted to hearing the piano today.

 

It was pretty amazing.

Successful Surgery

It's been one week since Everly's cochlear implant surgery. I'm not going to lie, it's been a long week. However, Everly is a stellar patient. The surgery went remarkably well and we did not have to stay a night in the hospital. We got to the hospital at 5 AM and we were home by 3 PM. She was in the OR for just over two hours. Amazing!! She had a bandage around her head for two days which Matt and I took off on Thursday. She has an incision about 2 inches long behind each ear. They are already healing so well.  I'm sure in a few short years we will not be able to see them at all. She also now has a bump on each side of her head where the implants lie. These bumps are fairly noticeable now but they will become less noticeable as she grows and gets more hair. Her recovery has been remarkable to watch. I'm so impressed with how resilient little babies and kids are. She is healing so fast.

With the surgery behind us, Matt and I can only think about her activation day. We will start the process on April 21st. That's just right around the corner. And Everly will hear sound for the first time! We will make sure to videotape her reaction so we can share with all.

As always, thanks for following along. And thank you for everybody's positive thoughts and prayers over the last week.

Much love,
Elizabeth

Waiting to see the doctor

About 10 mins after the "happy juice" ... She was very relaxed

Rolled off to surgery

 Waiting...the hardest part!

Waking up in recovery

Safe with daddy by her side

Oh man, what just happened!

Heading home

Swollen face

Trying a little food

Sleeping on mama

Getting stronger!

Getting some fresh air

Playing a little here and there

No more bandage!

More playtime

Smiley Evvie is back!

Better every day!



Big day!

Everly's surgery date is only TWO days away and I'm feeling a range of emotions. Excited, nervous, scared, happy... Mainly, I feel so fortunate that there is something we can do for her so that she will be able to hear and speak. 

Last week we received great news about her surgery; her surgeon now feels comfortable doing bilateral implants. That means she will receive both implants during her surgery. We were very surprised and excited to receive this news. This means only one surgery and one recovery for our little girl. 

Three weeks after her surgery, we will start turning the implants on through a series of mapping sessions with our audiologist. She will be 10 months when she is activated. 10 months was our goal as a family. And we did it!  

I will make sure to post updates as Everly completes her surgery and starts her recovery. Thanks to the support from our family and friends, we will get through this hurdle together. Thanks for following along.

Please send Everly positive vibes and prayers on Tuesday!! 

Love, 

Elizabeth

9 Months. Big girl!

Evvie loves riding on Grandma and Papa's new Duffy

Standing on everything

Trying out some knee pads

She loves big brother Brooks and follows him everywhere

Sound for Everly is on the horizon!

We spent all of January driving Everly to all kinds of appointments. It was worth it because at the end of the month we received great news that she is officially a candidate for cochlear implants!

We spent most of February working with our doctors to get the surgery request submitted to our insurance. After we received approval from insurance, we also went through a lot to get the surgery dates booked!

As I write it down it doesn't seem like much. But these past two months have been incredibly busy....many many appointments, lots of phone calls and persistent follow-ups to doctors offices and insurance companies, and not to mention the emotional highs and lows that go along with this process.

We are pleased to say that Everly's first surgery will happen on March 31st. And her second surgery will happen on May 28th.

Everly will be 9 1/2 months when she receives her first implant and just shy of her first birthday for the second implant. This is very encouraging, and we are excited to move onto the next steps in this journey.

I want to explain the process a bit so that everyone understands the progression for Everly for the next few months. Everly will not be able to hear automatically right after the surgery.  It is a quite an involved process to get the implants turned on and then mapped correctly for her to be able to utilize her implants. This happens two or three weeks after each surgery. Once the programming, or mapping, is completed, then we will continue therapy to teach Everly how to listen. It's a bizarre concept to try and explain. However, she will not listen or hear the same as typical hearing kids.  The implant stimulates the brain in a different way therefore the brain needs to learn how to hear. More on this process as we go through it. But my main point is, the surgery is not the end. It's only the beginning.

Everly is the happiest baby. Her little personality is developing every day. She makes lots of sounds, has really good eye contact, and plays like any typical eight-month-old. I know the sooner we can get sound into her little brain, the sooner she will be able to express her own language.

 All bundled up in Colorado

 Happy girl

 She's a great eater!

 "I'm stuck!"

 Already a pro shopper at Target

 Playtime outside

 Riding the train at the Spectrum

She loves riding in her red car