The Last Day of Kindergarten

So amazing how fast time goes!!  Here is Kylie on her last day of Kindergarten, I also included the picture of the first day. We are moving up to First Grade! 

Last Day

First Day

Is the music on??

Ever since Kylie was little she has had an iPod alarm clock radio in her room.  We used to play Little Einstein’s songs, Jewel, Enya songs to soothe her to sleep.  We felt the music did the job, perhaps because we fell asleep listening to it through the monitor.

In the last few weeks we have left her room confused, sad and perplexed.  Every night she says her goodnights, tells you what she wants for breakfast the next day, the book she wants to read tomorrow night, the order of the activities for the day, whatever it may be.  Then she gives you a hug and kisses and says goodnight.  Lastly she takes off her princess ears.  The last few weeks after she takes off the princess ears she looks right at you and says, “Did you turn the music on?” 

Think about it for a second, she can’t hear anything.  She has to ask you if you turned it on because she can’t hear it to validate if it is on or not and you stand there thinking. What do you do?? One side says you could say sure is and off you go but that would wrong.  You turn it on even though she can’t hear it because that is the right thing to do.  So tonight as we walked out of her room we set the sleep timer and on came the music maybe more for our benefit than hers.  However, she can’t go to sleep at night if the music isn’t on.  In her mind it is a check off her list before she goes to sleep.  Blanket – Check, Kisses – Check, Music on Check.  Sleep is next.  While it does leave us perplexed… she is always Smiley Kylie! 

A++++++++++++++++++++++++++++++

Today's appointment at University of Miami for Kylie was an A+++++++++++++++ appointment.  It's hard to believe how far we have come,  when we first started having appointments, Kylie's cooperation levels weren't exactly perfect. (Meltdowns were common and bribes were abundant) Now, she walks in like she owns the place and sits patiently and participates as she is needed.

Today wasn't just an A plus due to Kylie's behavior, it was an A plus as Kylie has made HUGE progress since being activated less than two months ago on her left ear. The reaction from the doctors is this is a lot faster and farther than they would anticipate Kylie to be at at this point.  Music to our ears!!  While you probably aren't as familiar with levels you should be at for hearing you are probably familiar with the 20/20 Vision.  Well Kylie's right and left ears are very very close to 20/20.  Is that not amazing to be labeled as Deaf and Hard of Hearing and now be at these levels??  That's technology, hard work and amazing professionals (our small village)!!

Here is a picture of Kylie's Audiogram from 2011 the straight line around 20 is normal hearing ideally you would want to be at or above that.  Kylie's left ear is the line that starts around 50 and drops significantly. Her right ear is the line that is at the bottom. You can see how she was missing out on so many sounds based on what she was hearing. 

Here is Kylie's Audiogram from today.  See the lines at or around 20?  LOVE THEM!

This means that Kylie has access to hear all sounds. This does NOT mean that she is walking around with perfect pronunciation and is now talking clear.  This is all learned and something she works hard on each day.  For instance, we live in Coral Springs.  Kylie says Horal. So we practice and practice.  Then there is Corn for what comes out like.. You get the picture! 

The technology incorporated into her cochlear implants is amazing and we are blessed that she was born in the day and age of technology. We are still excited to see her use the Bluetooth and take a phone call in her head!  For now practice practice practice and her speech and vocabulary will improve. One step at a time! 

The doctors were so impressed with her results today we went from bi-weekly appointments to not having to come back to July.  

Our Smiley Kylie -- another hurdle to check off the list! Love her to pieces! 

Happy 2nd Birthday Right Cochlear Implant

Kylie was very excited last week to celebrate her second birthday for her right Cochlear Implant.  I know it probably sounds crazy but really it is a special time to celebrate hearing for the first time and reflecting on the progress that has been made. We celebrated with a cookie cake and a few small gifts, I mean what is a birthday without a Publix cake?  Kylie was a little upset that there was no surprise for breakfast so what about pancakes with a candle?!?

The right Cochlear which has now been activated over 2 years is doing very well for Kylie and she has adapted.  Not saying her speech is perfect but she is becoming less unintelligible.   

The left cochlear implant has only been activated about a month in a half and huge huge progress on that side as well.  We take off the right processor just to work with Kylie on the left side and she is recognizing words and phrases.  If you ask her to repeat what she hears she is doing pretty good.  If you say mat and map she is not distinguishing the ending sound and at times says the wrong word.  It's all a work in progress and we are thrilled with her progress this far.  

Two mornings ago the oddest thing happened, Kylie came running out of the bathroom holding her ears and saying, "Mom there is a weird noise in the bathroom."  Funny how as a Mom we go running right in with no fear, I mean what if there was a grizzly bear behind the shower curtain or something but no we run right in.  After checking everything out I didn't hear or see anything unusual and then it hit me.  We just changed her program on her left ear and she was hearing the toilet flush.  I took her back in and flushed it again so she could make the connection and her comment was, "WOW it is LOUD!" It is amazing to me the sounds we hear and what we take for granted.  

Overall things are wonderful with her cochlear implants and her world is changing daily.  We are faced with a current challenge of riding her bike.  See with two cochlear implants wearing a bike helmet is challenging as it pushes the devices off her head.  She has to constantly stop and fix them.  If you know of any solutions please let us know. I am sure a head band or something first than the helmet will work just looking for ideas! 

With Smiley Kylie nothing will stand in her way :) 

Here is a picture of a dog Kylie drew and painted from art class.

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!!