Two Weeks Post Activation

It is hard to believe it has already been two weeks since the cochlear implant has been activated.  It  has been more roses and chocolate then the first day.  Kylie loves her new princess ear and knows how to put it on herself.  She turns on the device and knows how to make the outer part magnet to connect to the internal part.  

Is she hearing better?  Does she recognize her name?  Has her speech improved?  I wish we had concrete answers to those questions.  What I can say is it gets better each day and small little things like saying STOP and pronouncing the S for the first time are the milestones that we celebrate.  She has been talking non-stop since they put it on.  However,  for Brian and I that see and hear her everyday it is hard to say we see big improvements.  They tell us it could be several months before she experiences the true impact as they have to adjust it to get her there. 

We are currently on program three of the three programs they built for her when we activated the device.  We go back on Thursday for them to test it and build more.  Keep in mind she is at the bare minimum for the device and potential they are gradually increasing that each time.  She still rolls herself into a ball when you first turn it on in the morning but that process has gone from 15 mins to a minute or two.  She knows it is coming and braces herself and then moves on with her day.

The device doesn't get in her way and her life is back to normal if not better.  We did try it swimming over the weekend but the outer part needs a stronger magnet that only the doctors office can fix.  

Here are some things we have been up to since the cochlear was activated.

Here is Kylie whom finished her second season of Soccer checking out her new medal (she calls it money)

This is a bench that we received from Terri and Hugo almost 13 years ago as a wedding gift.  My Mom, Kylie and I re-stained it so it will last even longer!  You can see her processor in this picture (the purple thing clipped to her shirt)

There was the beach.. Kylie was showing off the device she can swim in.  It has all white wires vs brown for water.

Here is Kylie trying to catch a wave

Of course after catching too many waves you get worn out!

Here is Kylie at her end of the year Pre-K Party / Graduation Party.  Kylie misses the cutoff for Kindergarten so she will repeat Pre-K with the same teacher.  This is a huge benefit for Kylie as it will allow her to catch up with her speech etc.  They still allowed her to be part of the graduation ceremony.

This is a picture hanging in the school that Kylie created.  She was asked what she wanted to be when she grew up and she wants to be a doctor to help with Boo Boos.  (Shocking I know this is the girl that sleeps with band-aids under her pillow - Just in case)

To my Mom and Dad - I have to say she far surpasses my drawing abilities already!

Activation Day - Happy Birthday Implant

Yesterday was the big activation day / Happy Birthday Implant Day for Kylie and her Cochlear Implant.  No matter how much they prepared us for what the day would be like I don't think we were truly prepared.  Don't get me wrong we are totally thrilled by it but it wasn't all roses and chocolates.  Does that make sense?


To put it in perspective imagine sitting in a quiet room and then when the device is turned on you are thrust into an ongoing football game at the 50 yard line.  Even for us this would be challenging with the loud noise and for someone whom has never heard any of these noises before it is very difficult and traumatizing. 


We were grateful to have a great group of experts at the activation appointment which included Dr. Myriam, the audiologist whom programmed the device, Dr. Cruz a family Therapist whom oversees the cochlear implant program, Ms. Needlman who is Kylie's Auditory Verbal Therapist, a representative from the Kids Hear Now Foundation,  Ms. Ivy Kylie's Deaf and Hard of Hearing Teacher, my Mom and of course Brian and I.  So many people in a little room to witness this amazing journey.


The appointment started off with programming of the various channels that are included in the device and making sure that all of the electrodes worked correctly, which all was good.  After each channel was set the moment we all had been waiting for occurred.  Dr. Myriam activated all the channels so that Kylie could hear for the first time on her right side.  Keep in mind with the implant the sound is being picked up from a circular device on the back of her head as this is where the microphone sits.  Eventually we will add what is called a T-Mic to the device which will sit by her ear to help in capturing the sound.  


Here is the video clip of Kylie being activated for the first time

 

Now that activation occurred now it was time to tweak the settings according to what responses they were seeing with Kylie.  Kylie kept everyone on their toes and laughing as she pretended to be Ms Ivy by wearing her glasses.  You will hear Dr. Myriam testing Kylie with various sounds during this time frame.  




One of the last parts of the appointment was that we had to put Kylie in an even louder setting to see how she would react and make the adjustments accordingly.  Please note that this video may seem cruel but unfortunately it is just part of the process.  It is truly a blessing to see that she does react but then teaches herself the sound and the noise that she  hears.

When we left the appointment yesterday we had a difficult afternoon as Kylie just didn't want to wear the device.  Would you blame her if your world was turned on such a high volume?  Dr. Cruz instructed us to no matter what keep putting the device back on and we did even through the screaming and crying.  My nerves were shot but we were successful in getting her to wear it for a long duration of time.  

It was an amazing beautiful day and one that we will remember forever.

Today, was even better that Kylie wore the implant the entire day and went to school.  So exciting.  Unfortunately, she does not understand the language and sounds that she is hearing and at times doesn't even turn when you call her name as she doesn't know that that is her name etc.  This is all normal and part of the process just hard one to witness.  Her report from school was she was smiley Kylie.  Would you expect anything else?  In 24 hours we have already come a long way and know that it is only going to get better from here! 

Here is a picture of the box that the implant device comes in and all its accessories.  That's a lot of stuff!  

  

Back To Normal

Kylie continues to surprise us.  She is back to normal attending school and doing well!  The scar is minimal and she tells you her bo bo is all better.  We have a date set for May 14th for the stimulation of the device.  This is the first time they will turn on the device and she will hear out of it!  We are so excited!! 

Here is a quick video of Kylie a week after the surgery at a First Communion Party dancing with her pal Noah.  She danced almost the entire night at the party.

As you can see she is doing fantastic and we are so pleased!