The Left Cochlear Implant is Activated!!!

Today was the start of a new journey with the new CI on the left side.  Kylie did really well with activation and I will post some of the videos below. The differences we saw from the Right to the Left with activation was very different.  Smiley Kylie remained smiley whereas the last time she was a little more nervous and cried with the new sounds.  

The best way I can explain the activation is Kylie's ear is a baby and brand new.  She has to train her brain to hear the sounds coming through the Cochlear Implant.  You could probably say Bob and Kylie and she would turn for both.  She is recognizing there are sounds but she is not sure what she is hearing.  However, over the day she has made improvements. 

Kylie is allowed to wear both implants to school but at home she needs to only wear the left one so that she doesn't favor the right one which of course is easier for her.

Cochlear Implant Fun Fact - Did you know that since Kylie is bilateral it doesn't matter which cochlear processor we put on in the morning on which side? (Mom I can see your quizzical face right now!) The internal components know and will adjust to the program for the corresponding ear.  So if she accidentally puts the right processor on the left ear she will still get the programming built for the left.  How awesome is that! 

It's been an amazing day, however honestly it has been gut wrenching as well.  I know it will all get better, however watching your daughter struggle and not even know her name is hard.  I could easily put on both cochlear implants and she could hear but that wouldn't be helping to train her brain and I can't do that even if it is the easiest thing.  Kylie is eating her dinner and watching TV now which she has advised us she can't hear.  One day at a time! 

As I waited for the videos to upload to YouTube so I could share them, I played my go to music Maroon 5.  Animal came on and Kylie with one implant on turned and said, "Mom, Animal again?"  I cried that's a good sign!!! 

Here is the video when she was first activated.

Here is her listening for sounds when she hears something she has to put her card on the table.  

Here is a sample so I could show everyone on how she hears with both implants and what happens when I take the right one away. 

 

 

The Universal Language

I couldn't sleep well last night.  I am not sure if it was because I had gone to see Theresa Caputo last night or the anxiety of Kylie's Cochlear Implant activation today.  I am sure a combination of the two and then some.  

When my alarm went off to go to the gym this morning at 4:40am, I got up in intentions of going but found myself making my way upstairs to Kylie's room. All I wanted to do was check on her.  I quickly climbed in bed with her and laid next to her.  She was still sleeping but wrapped her arms around me and we cuddled and slept. I am not sure slept is the right word, Kylie is like a portable heater when she gets next to you! 

When the alarm went off in Kylie's room this morning she opened her eyes and was surprised to see me in her bed even though she had been plastered to me for the last hour plus.  

The point, deaf or not deaf cuddles and hugs are a universal language.  I am sure all parents would agree it is something you treasure and you don't want to let go.  Life gets SO busy sometimes and being able to stop for a minute and cuddle meant the world!! 

Easter Break

We had so much fun this Easter with my parents in town.  Kylie anxiously awaited the Easter Bunny, she couldn't wait to wake up and find all the Easter eggs.  It is all she talked about for days and she wasn't disappointed.  Her favorite gift was walkie talkies and she thinks the Easter Bunny is super cool.  

Kylie and Grandpa coloring eggs

Kylie excited on Easter morning 

My parents took Kylie to the beach on Saturday where they rode bikes as well as went swimming and surfing.  I think Kylie wants to surf like her Dad (Brian).  Oh boy Flowrider all the time for both of them.  FUN FUN!!

Watching the Waves

Riding the Waves

She did it! 

Although, Easter was wonderful we are counting down the minutes until our appointment on Wednesday to have Kylie's Cochlear Implant activated!  So so excited! 

Back to School

Just a quick update, Kylie is back to school after being off for a week for the surgery recovery and then Spring Break.  She is doing great and activation for the second CI is scheduled for April 9th. She still has some suture tape behind her left ear that they said would fall off on its own.  I am not in a rush to help pull it off!  The activation is just a few short days away.  Smiley Kylie all the way! 

The only small downside to the surgery is now Kylie really can't hear when she doesn't have her princess ear in.  She did have some residual hearing in her left ear which she no longer has.  So at night when you take the princess ears off she can't hear you say, "I love you!"  It breaks my heart as I used to be able to tell her that from the top of the stairs and she would scream back but now she doesn't hear it. Please don't take that the wrong way, I am very grateful that the technology allows her to hear for 99.7% of her day! 

We are testing out an Aqua case which allows Kylie to wear her CI for baths, swimming etc.  The case seems like an Outterbox case for your iPhone so it is very cool.  It really helps us in engaging in conversation while she is taking a bath (which normally she can't hear us).  Makes the whole process super easy!  She modeled it while covering all the proper parts tonight.  

Her CI processor is in the case that we can put around her arm that is waterproof.  She can submerge herself in water etc. 

On a final note - The question of the night is when will she grow hair under her arm pits.  Seriously she is 6.  So not ready for this!! 

She's on the mend..

We took Kylie to her post-op visit with her surgeon on Tuesday.  He was thrilled by her progress and advised she is healing very well.  She can officially wash her hair/head this Saturday.  A week of no hair washing is quite interesting.  She can resume "normal" activities in about 10 days.  We discussed her going back to school but nervous as she can't run and play, get sweaty, get bumped, fall down etc so we decided to keep her home with more time to recover.

Here is a picture of her and Dr. Telischi.  Kylie made him a robot mask and one for her too. They are both goofballs.

Kylie has finished all her classwork and homework so she decided to make a train with boxes and leftover parts around the house.  It included headlights, wheels etc.  

Grandma also took Kylie to Butterfly World to get a little bit of a break outside of the house.  She loves the birds and the butterflies.  Happy girl for sure!  

Today, along with Grandma she is going to go to school and surprise her friends for about an hour. Today is a half day before Spring Break starts tomorrow.  She's been practicing, "I'm back!"

The Leprechaun Strikes the Lum Househould

One of Kylie's favorite things she remembers about Pre-K, thanks Ms. Grace, is St. Patrick's Day and how the Leprechaun came and messed up the classroom and caused quite the stir! 

Well since Kylie can not go to school the Leprechaun came to her!  She woke up this morning and ran down the stairs and said, "Come Quick, I can't believe this!"

He wrote on her mirror with marker! 

The Leprechaun even painted her nails while she was sleeping (Grandma was checking his work - wink wink)

He flipped her table upside down and then left Minnie Mouse there reading a book about St. Patrick's Day! 

He decorated the kitchen table with flowers and green confetti 

Kylie showing us the mess the Leprechaun made on her floor.  She said, "I just vacuumed it yesterday!" 

The Leprechaun even went potty! 

We hope you have a fantastic St. Patrick's Day.  

THE END.. The Beginning

The End.  No this is the beginning.

Around 2 and half years old we started the process of identifying why Kylie’s speech and vocabulary was not at the level for her age.  What we thought then would be speech therapy sessions and working on flash cards turned into finding out our daughter was deaf and hard of hearing.  She has gone through more hearing tests than you and I have combined, CT Scans, MRIs, ABRs, EKGs, Halter Monitors and therapy sessions. We tried hearing aids in both ears and increased amplifications with not the results needed.  Keep in mind she did all of this while remaining our Smiley Kylie.

We were referred to University of Miami and to look at Cochlear implants as the next option.  Cochlear what?  Although in the beginning the question of why us, crossed our minds many times by this time in the process we quickly embraced the angel we were blessed with raising on earth.  Months of testing ensued to see if Kylie was a candidate for a cochlear implant and papers were prepared for the insurance.  More waiting, months of waiting and several back and forth conversations between University of Miami and our insurance and finally the approval for the cochlear implant for the right side and surgery is scheduled.  Surgery is completed Kylie is doing amazing and we move forward.

But wait, like us doesn’t she need two ways to hear not just one.  More tests, more insurance back and forth and that brings us to today, two years later!.  Surgery day for cochlear implant number 2! 

This is THE END of a process that started 4 years ago.  Kylie now has the equipment she needs to succeed in life.  From this point forward we just need to fine tune and update her implants and immerse her with language, therapy and love to grow and “catch up” to the levels for her age.  This is THE END of something we have spent so much of our time on.  This is the final exhale, the END of the road, the END of the journey. 

Although this is THE END, this is the beginning of a new road and a new journey and one we are so grateful that she has the ability to be on.  We are truly blessed by the amazing doctors, professionals, family and friends that have held our hands, encouraged us, played a role and helped make this all happen for our little girl. 

Now watch out world cause this one is going to take the world by storm!  

Here are some photos from today

 Time for a funny photo with Grandpa and Grandma in the hospital parking lot at 5:30am

 

Kylie and Daddy 

Hospital Gowns - What happened to the back??

Almost time to go back so let's do a funny photo or two 

Transport can I get a quick ride to the Operating Room - Smiles and giggles included

We are out of surgery and resting

All she wanted was to wear 

her cape on the way home.  In my book SuperGirl is very fitting

Resting on the couch at home and hiding a smile