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!  

 

Post Op Visit

Today was the Post-Op Visit with the  Dr. Fred Telischi.  We received great news that everything is healing well and Kylie is well on her way.  She can wash her hair on Saturday.  The tape covering her stitches will start to come off naturally with the water.  We have to keep her home for the most part as they don't want her to catch a cold or get an infection.  She can go back to school on Monday.  No Swimming for 4 weeks, oh man that is going to be hard it is like mega hot here!

The best news is that we are working to schedule her activation of the cochlear implant which will be in about three weeks.  The best is yet to come.

Did I get any taller since Friday?

Here is a picture of Dr. Telischi, Kylie and Brian.  Brian and I got teary eyed when shaking his hand as he gave our daughter a gift that we could never repay him for.  What a wonderful doctor who is so patient and kind with Kylie and made her feel comfortable.  

Of course as we left the appointment Kylie had to thank everyone and tell them goodbye.  The "older" clients found it super cute and amusing.  


To celebrate Grandma and Kylie made cupcakes

The Bandages..

Good Afternoon to all!  This is Guest Blogger Grandma updating everyone on Kylie.  She is having a great day and has received so many thoughtful gifts to occupy her time.  We just go from one activity to the next. Painting, Coloring, Watching TV, Games and GO FISH  a new favorite to name a few. Grandma is tired but happy that Kylie is happy and not in pain.

 Here is Kylie last night getting ready for bed.  We ran out of shirts that would fit over her head so we improvised with using one of Tricia's Shirts and tied it in the back.  It fit well and Kylie swirled around wearing it and thought it was funny.  We were supposed to get her bandages off last night but she outright refused and melted down with the thought.  So we put her to bed and devised a plan for the next day.

This morning Kylie woke up with a big smile and ready to rock and roll.  Tricia asked her if we could cut off her bandages and she told us she would.  So we helped her and see below.  Everything was done by Kylie herself!  We just had to help trim some tape where the hair was cut.  (Brian and Tricia wanted to take pictures of the bandages to show other families all the steps of the process and it isn't that frightening after all.  They want to be a family that can assist others as they go through the process)

 

Here she is after we cut off the side.

It Only Hurt when the tape got caught on hair

All off

 

Smiley Kylie although we still can't wash that hair for awhile.No more bandages only small tape over the stitches

The rest of the day was fantastic and Kylie continues to improve each day.  Small shaking at times and a slight fever but no complaints overall.  She does hold her neck very stiff and doesn't turn the neck to look at you only  her body.  A plus day for Grandma!

The Start of a New Journey...

This past Friday, after all approvals and clearance were achieved it was an all go to have Kylie’s cochlear implant surgery on her right ear. The surgery took place at Bascom Palmer, a part of the University of Miami Health System down in Miami.  We were scheduled to be admitted at 6AM. Given that children go first, it was good to know that she would be in the first if not second surgery of the day.

 

As much as the day seemed like it was going to be a stressful event, it turned out GREAT. Our cochlear teams from the University of Miami, who we have worked with from day one, were great in constantly keeping us updated. It had to be the biggest relief when Dr. Fred Telischi, the surgeon, called us in and said the surgery was a success with no issues!

Early morning risers at the hospital... (The Tiger was from her teachers Ms Grace and Ms McKinley and accompanied her throughout the day)

Here is the operating time table chart that we would keep an eye on. Kylie was in OR 10

Waiting to be called in to the OR. Kylie liked the additional bracelets besides her own

 

All done! And still a smiley Kylie!

 

After an exhausting day, we left around 4pm...this pose resembles several individuals in our family!

Glad to be back at home relaxing!

 

We will keep you updated. On Wednesday, we go back to see Dr. Telischi for our follow-up and in approximately 3-4 weeks they will be able to utilize the processor that will then allow her to hear all the sounds like you and I do!

Pre Op Complete

Good Evening to all!  I know a lot of you have been emailing and texting to find out all the details of the doctors visit and upcoming surgery.  I figured that I would do a blog post so I could capture all the details in one place.

The Pre-Op appointment started at 10am with a visit to see the surgeon.  We talked through all of the possible complications of the surgery and the steps of the surgery.  I would have to admit the complications are super scary and we had to sign our lives away on the consent forms.  I don't know about you but watching TV and listening to the commercials for new pharmaceutical drugs and the complication that may result of rectal bleeding is scary too.   (Don't believe me about the above pay attention to the commercial next time!)

The surgeon will take approximately a hour for the surgery once the anesthesia kicks in.  He will do a small insertion behind her ear, yes they will have to shave her hair around her ear a little bit but nothing drastic.  From there he will insert the electrode (the tail looking piece) through her cochlea.  You and I have hair follicles in our cochlea that captures the sounds.  Kylie's are damaged.  It is too hard to see in this picture but at the end of the electrode there is electrons that support Kylie with sound.  The other part which acts as part of the processor and has a magnet will be under her skin on her head and attaches to the external processor part (which will be applied in about a month).  As you can see this is the size of a nickel. 

 

The sutures that Kylie will receive will be dissolvable. Her head will be wrapped and she will have to wear the dressing for up to 48 hours.  The doctor indicated that she will experience some swelling of her head / ear area after the insertion as her body wants to fight this foreign matter.  They expect her to bounce back after a few days but can experience been dizzy and unstable for a little bit.  They would like her to stay out of school for about a weeks time. 

After a very thorough explanation from the surgeon offices we made our way over to the hospital to do our pre-op visit there.  At the hospital they walked us through the procedure in massive detail, walked through the day of surgery and we met with admission, nurses and the anesthesiologist. Of course they had to make sure our money was good too!  Love Insurance!

 Kylie was quite the trooper as she has had her blood pressure checked multiple times and was poked and prodded everywhere but she checks out as in great health and can proceed with surgery.  She of course in true Kylie style thanked every nurse, doctor and person we came across and said, "Have a Nice Day!"

Best case scenario she will just have to go through general anesthesia but they will be prepared for anything that she may require.  The Anesthesiologist was calling Kylie's Cardiologist  as we left to just review her heart condition and the anesthesia.  We left the hospital around 1:30. 

Everything seems to be set, we don't have a time frame for the surgery yet they will call us the night before.  Most likely 7 or 8am on Friday morning and they anticipate we won't leave until the afternoon as she has to recoup etc at the hospital.  I know I know yes day surgery and they are cutting into her head.  She may come home but I may still be in a straight jacket somewhere! 

We haven't really told her what is going on as I am not sure she will understand the complexity of it.  I think telling her closer to the surgery that the doctor is going to give her a new princess ear is the best that we can do.  Just saying doctor right now she gets a little nervous as she thinks she is going to get a shot or blood taken.  Less is more I believe in this scenario.  

Thank you again to all for your kind words, thoughts and prayers for our family we are so full of appreciation and love. Kylie's future is so bright she has to wear cochlear implants.     (I hope some of this made sense I am exhausted!)