It's been a week

It is hard to believe that it has been a week since Kylie's left cochlear implant was turned on.  Everyone asks us how is she doing, is it working etc?

When they turn on the implant think of it like the volume button on your TV.  She's at a level 1 where the goal is to be at 20.  At level 1 some noises and even voices make her jumpy.  The goal is for her to start to be able to distinguish sounds she is hearing. (To the "experts" that read the blog - I tried my best to explain it!) We have been practicing nightly of just wearing the new CI and learning and teaching sounds with her.   So.. that leads to the doctor's appointment for today.  Unfortunately I wasn't able to attend today but got a great debrief from Brian.

In the beginning Kylie has to go weekly to get new programming, they work with her and set three programs for her cochlear.  Ideally she uses program 1 for a few days (think volume 3) then program 2 and then program 3 and then we are back again to get more programs.  Each program increases the access.  Keep in mind this doesn't mean she will speak clearly when she is at 20.  She has to be taught like a baby all over again how to talk and what to say.  The benefit she has is she is so far along with the other ear.

So when Kylie went to the appointment today the Doctors were THRILLED with her progress so far.  They even questioned if they accidentally left on the"older right cochlear implant on".  The sounds and progress exceeds where she was at at this point on the right side.  We owe this to all the doctors and professionals that work with Kylie everyday.  Not to mention that Kylie when faced with a challenge does not back down (hmm no idea where she gets that from). 

We are so happy that the implant is working and she is gaining access from it already.  Imagine the blog post in six months.  Will you ever know she was deaf and hard of hearing?

Check out the videos from today

The first video shows the doctor testing Kylie with sounds with only the new CI on and she has to repeat.  

The second video shows Kylie being the doctor (which she wants to be) and testing Dr. Myriam with the sounds.  Since Kylie has been going to University of Miami she always gets stickers when she does well.. So she repeated the favor. (I love the white coat - Can I retire yet??)

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!