Monday, December 24, 2012

People have questions, we have some answers

Sometimes when we are out and about, people will ask questions about Chance's implants.  This has been the case from the beginning.  People are curious at the park, the store, the zoo, the restaurant.....we have been approached in all of these places.

I am glad that people feel comfortable asking about Chance and his implants.  They usually have a personal interest for doing so such as their grandchild just got diagnosed with hearing loss, or they have a friend whose child is deaf etc.  Sometimes, people are just curious.  Most of the time they are hesitant at first, trying not to offend, but it has never been a big deal for our family.

My children once took advantage of the fact that a grandfather approached me in the frozen food section of the grocery store to ask about implants, and added items I don't usually buy into our cart. Chance was in on the deal too.
This grandfather had just found out that his grand daughter was deaf and wanted to know how I felt about the implants and if they had really helped Chance.  

Chance has implants and many people out there don't know exactly what they are and how they work.  Or if they really work that well at all.
Chance takes it all in stride.  He takes them off his head so people can see them or just talks to them and answers questions.  
I have asked Chance and it does not bother him to talk to people about  his implants.

I don't feel people are being rude when they ask about the implants, I would rather have them ask then just stare and wonder. Especially people who have young children in their lives who have hearing loss as most of us know next to nothing about hearing loss and deafness when the diagnosis is handed down to our families.

This week, Chance was at a college basketball game with some family and friends, when the people sitting in the row behind him, noticed Chance had implants and asked him how long he had had them.

When Chance told them six years, they said,"Wow! Only six years.  You talk great!"
It turns out this family has 5 year old triplets, two of which have implants.  They got their implants at six months of age.

The triplets were not at the game, but Chance talked to their parents about his implants and how he liked them.

It was always nice for us to see kids that were a little bit older with hearing aids and implants when Chance was younger so that we could get a glimpse of what the future may hold for Chance.  
Chance is now at a stage where he can give parents of little kids with deafness a glimpse of what the future of their implanted kids may hold.
And the possibilities are amazing!

Wednesday, December 19, 2012

We're mov'in on up

In case anyone is wondering, we have not yet found the remote. We are past the point of thinking it is just laying on some random surface of the house and has been overlooked.  Obviously, the little device has found a more obscure location to lodge itself. I would have included a picture of the remote in this post, but obviously that will have to wait.

 Did I mention that the remote costs $500.00 to replace?

We need that remote, and deep down, I think it needs us too.  After all, what good can it do if we can't use it?  Pray for us.

On the bright side, Chance just had another visit to his audiologist.  His left ear, which had been performing at about 30% is now scoring at 75% with 72% word recognition and 87% phonemes recognition.  Before the implant failure, he was scoring at about 85% in that left ear, so we are on the way back to normal.

To demonstrate what having a loss in one ear can do, I share an example from Chance's Sunday School class several weeks ago.  The teacher was talking about a man named Aaron.  Due to rowdy 12 year old boys and the sheer number in the classroom, Chance was having a hard time hearing, so he repeated back, Darrin?
His teacher said no, Aaron.

Chance said Saren?

His teacher said, "No, Aaron."

"Maron"  Chance asked.

His teacher said A-A-R-O-N with added emphasis, speaking slower and smacking his hand against his head. This was in no way intended as a slam on Chance, he is good friends with his teacher.  It was more exasperation at the noise level in the classroom.

"Oh AARON!"  Chance said laughing.

Having two fully working ears really does help:)

Friday, December 14, 2012

The remote

Chance is a responsible and organized boy which is a good thing.  Except, in the case of his remote for his implants, it was not enough.

We have lost the remote to Chance's implants. When we first realized that this new upgrade had a remote control, we immediately thought of the possibility of losing the remote.

We reasoned that Chance was older now and that should lessen the chance for a loss since he was old enough to be responsible and take care of his things.

We even designated a place in the house where the remote should go.....the implant drawer where batteries, stick ons(for the cover of the implant) and protective cases are kept.

We made it for a few months:)

We keep thinking the thing is going to turn up in some random place but so far it has kept itself well hidden.
Part of the problem, which we will be sure to address as soon as we actually find the dang thing, is that Chance tends to carry the remote around the house at night.

We need some sort of system like our phones have so we can page the remote.

The remote is awesome and a great tool to help change channels on the implant etc. and someday, we'll be able to utilize those options again.

Soon.  Hopefully soon.

Sunday, December 02, 2012

Honor Roll

Just a little poem to express some of my feelings about our journey with my sweet son Chance.

      A Chance To Hear

There once was a young boy who could not hear,
he had been unable to express that he was deaf in both ears.

When the diagnosis was given, the doctors were leery,
what could they tell the boys parents who were shocked and weary?

Would this boy go to school with all of his peers,
would he ever regain the use of his ears?

Could he play sports and be active like his brother,
would he and his hearing cousins be able to bond with each other?

Would the neighborhood kids include him in their games,
could he hang out with his peers and feel just the same?

What would this boy be able to learn in school,
would he only communicate with other deaf people as a rule?

What were his possibilities for jobs and career,
would he be independent and interact with those that could hear?

Would his options in life be limited and created by others,
would his life be full of the same possibilities as  his brother?

How would this deaf boys life play out,
would he feel fullfilled and know what the world was about?

Would he realize that he was capable of anything he sent his mind to,
that he was smart, and could do anything anyone else could do?

Did he know how much he was loved even though he did not hear the expressions,
did he know  his parents were doing everything in their power to help him?

Did he feel when his mother held him that everything was going to be alright,
that together with his dad they would find what he needed no matter the fight?

Only time could tell what the boys future would hold,
everyone would have to wait and see what would unfold.

It soon became apparent that the boy was persistent,
he would work hard, over come, and be resistant.

After being behind his peers by two and a half years for many grades,
the boy  would begin to triumph and the gap would slowly begin to fade.

When his peers worked hard, the boy would work harder,
he was not content with just doing the minimum, he was determined to go farther.

After years of work, determination and incredible will,
the boy caught up and surpassed many of his peers and kept going still.

By junior high, and a failing implant that had to be replaced,
the boy was holding his own and moving at an accelerated pace.

As a sign of triumph and a testimony of what this boy could accomplish,
he completely immersed himself with his peers and caught  up from his early years

He had never given up and held strong to lofty goals,
and now a certificate from his school has let him know,

Despite all the obstacles, challenges and the unknown,
through the years the boy had persevered and grown,

And as just one of the tokens along the path has shown,
how far he has come, how far he has grown,

The boy brought home a certificate so that we all could know,

Monday, November 19, 2012

It helps if you are known as "The Beast"

Though Chance has navigated his implant failure with his usual perseverance, and the situation is being effectively taken care of,  he struggled at the beginning of the school year.

It was Chance's first year at this school and everything was new.  The kids, the teachers, the schedule, the curriculum and expectations.

This is not a pleasant situation to try to navigate when your hearing is failing.  I think Chance felt extra vulnerable at a time when he had a lot of changes to adjust to.

Chance is a perfectionist and it is very important to him to do things right and well.  Not being able to hear like usual made the situation harder to adjust to and Chance really struggled for a time.  I don't know that Chance identified his hearing loss as a cause to his anxiety, but I know my Chance.

He was concerned about not hearing what the teacher was saying.  He struggled with meeting the new kids he encountered as it was difficult for him to hear what they were saying sometimes.  Indeed, I witnessed several times in the halls of school and in the lunchroom  when kids would say,"Hi Chance!", and Chance would have no idea that he was being addressed.  I don't think Chance realized how many kids were reaching out to friendship him.

For the first several weeks Chance suffered with some serious anxiety at school.  The women in the special ed department were so good at helping him feel welcome and making arrangements for him to test in their office if he needed a quiet environment.

We talked at home about taking deep breaths and helping ourselves calm down when we started to feel anxious.

Chance in the fall leaves in the mountains near our home
Chance was well accepted at school and the teachers told us how much they enjoyed having him in class and what a great student he was.  The special ed department and the teachers also worked to make sure that Chance was seated where he could hear in the classroom and  some teachers noticed that he wanted a clear line of sight their mouths so that he could lip read if he needed to.  Chance is a pro at lip reading.

I know that there are several deaf children and adults who have only one implant.  The fact is, that second implant really makes a difference in how well you can hear and to have the ability taken away for whatever reason, is unnerving.

I hear perfectly well out of both hears (give and take:) and I go crazy when one of my ears gets plugged up.  It is distracting and I have to focus harder on what is being said and ask more questions of my kids and others when they talk to me to ensure I heard them right.

I can only imagine what it was like for Chance to loose half of his hearing.  And he lost more than I ever loose with a clogged ear.

Things are now going well for Chance.  There is a little bit of adjustment for Chance with this new implant even though Chance has had two implants for years.  Each time you get an implant is a little different I think.  Chance is hearing well and his anxiety has all but left.  I don't get texts anymore telling me that he is having a hard time and he happily leaves the house for school each morning.

There are some things he is working on to fine tune his hearing with his new implant. Chance meets with a consultant from the School for the Deaf once a week.  We love you Nancy! And Chance has had some funny incidents at church etc. when there are lots of crazy boys his age being loud and Chance has not been able to hear exactly what is being said.  He takes it in stride and even chuckles about it.

Chance has been nicknamed "The Beast" in futsal. Being known as The Beast can only help in any situation, since it just sounds like you have everything under control. During last period each day, Chance takes a bus off campus with his team to an indoor soccer field.  He gets to kick a ball around for close to an hour. That makes it all right in his world.

Just call him The Beast.

Sunday, November 11, 2012

Sing on my son, sing on!

So far in my career of being a mother, I have managed to override the discenting voices at school that tell my boys that real men don't sing in the choir.

I am happy to report that both of my boys not only sing in the school choir, but in our church choir as well. The boys are in different choirs at school due to their ages, but that just adds to the volume of music we get to enjoy around the house.

Before his recent concert, Chance asked me if I was familiar with the Beach Boys as they would be singing some of their songs.  I assured him that I was and he was truly amazed to learn that this group has been around for decades.

Both boys benefit from learning to sing and read music etc.  And it really helps Chance to have music in his life and to learn to hear the difference in notes, and to learn to match his voice to the notes.  He has learned so much about how music works and that only helps him to enjoy music all the more with his implants.

Chance just had his first choir concert of the year and as the kids marched into the audiotorium to perform, all dressed to the nines and looking professional, I counted the boy to girl ratio.

There were 30 kids and 7 of them were boys.

I would dare say that this choir needs Chance as much as Chance needs this choir.

Chance enjoys singing and is dedicated to learning the songs even though it often takes him longer to learn the subtle differences in pitch etc.  I am so proud of him.

Chance and his group gave an entertaining performance and I look forward to seeing more of them through out the year.

In a few weeks, we will gather back at the school to see Chance and his brother perform the songs for "Les Miserables."

It is good to have a little culture in our lives.

Monday, October 29, 2012

The grades are in

Chance (with 2 new implants) races his brother up the stairs.
To keep Chance caught up amidst the implant failure and surgery, his dad and I feel a bit like we are back in school.

This is mostly because of two things:  Chance began attending a school this year that expects a lot out of the students and Chance has missed quite a bit of class time.  And our little Chance is a perfectionist.  He wants to do it right.

Being a perfectionist is not a bad thing for Chance to be.  He has a natural drive to succeed.  He also gets stressed if he doesn't feel like he can do something right.

For instance, he came home the first week of school and said,"I only got a 92 percent on my math test!"
Then he flopped on the ground and  moaned,"I'm not going to get a 4.0 in this school."

O.K. then. It is important to note that unknown to Chance, this test ended up being a placement test to figure out what the students already knew and where they were in their knowledge of math.

We as his parents have not pushed Chance for perfection.  We were happy with the 92 percent actually. Good heavens, the boy is already taking 8th grade math in 7th grade, we as his parents are fine with his performance. Chance actually started out in 8th grade honors math, but due to the amount of school he missed due to surgery and appointments related to the surgery and the fact that his hearing was fluctuating, he was having tons of math homework to do and catch up on.  We figured he didn't need that much pressure while he was dealing with the implant failure, so he went into regular math 8.  Still a year ahead, but with some breathing room.  Math is one subject you don't want to get behind in.

Chance wants to do his best in all he does though and it bothers him to think that he won't be getting the grades he wants due to his implant surgery.  Therefore, Chance's dad and I have been staying up late and spending many hours working with him to help stay caught up.  Chance has some great teachers too, that have let him turn things in a little late when he has missed school. The school is usually really strict on turning in late homework assignments.

Chance has been working his little tail off to keep his grades up while losing hearing, gaining hearing again and getting used to a new implant.

He is my hero.

His drive to succeed seems to have paid off. .  Term grades just came out and Chance is a straight A student. In several classes he has 103-104 percent of possible points. He was very thorough in his work, usually got full points and then did extra credit.

He is happy.  We are happy.  And Chance can hear out of two ears now.

Life is good.

Monday, October 15, 2012

Dr. Shelton's bedside manner

Chance's surgeon, while examining the scar on Chance's left side  from the original implant surgery, remarked that the scar was a little wide and had the nurse note that during the second surgery, they would narrow that scar.

Chance's scar after the first surgery
The scar may not seem like a big deal, it is not overly noticeable, but the fact that the surgeon was involved enough to care about the scar width spoke volumes to me.

This is a surgeon who cares not just about getting the job done, but the small things that may affect the patient.

Chance being a boy and all, means that he does not have long hair to cover his scars or implants.  I have seen girls with implants from the time they are tiny with hair that cascaded down and covers the implants so that you barely know they are there.

Chance's new scar (still fresh and healing)
Chance's implants are right out in the open, easily seen and noticeable.  A surgeon with a bedside manner that cares about such little things,  builds confidence that he will also be cognizant of the bigger things during surgery.

Dr. Shelton has been cognizant and has taken great care to line up the spots on the back of Chance's head where the magnets are attached.  We have had many comments through the years about how perfectly Chance's implants line up on the back his head.  The implants may not need to be perfectly aligned to function the way they need to, but it is nice to have someone care so much about the aesthetics.  Because the aesthetics are important to the recipient who will have these implants in place for the rest of their lives.

What perfect alignment looks like
A big thank you to Dr. Shelton, his skill in what he does, and his caring for the patient (and their mother) to get even the tiniest details right. Our family will be forever blessed by his talent and caring.

Monday, October 08, 2012

The unwinding

Once again we got to unwind Chance's implant bandages here in the comfort of our own home.  The first time we were unexpectedly made aware that the bandages were sticking to the wound and Chance's dad and I switched our roles at that point:  I started filming while his dad dealt with the wound:)
Chance is ready to unwind

You are sent home with a big old mummy wrap around your child's head, and then they tell you to take it off yourselves.

That is all well and good, but the first time we were unprepared for the fact that the bandages were sticking to the wound through blood.  I was doing the unwrapping at the time and Chance's dad was filming as we stood in the bathroom facing the mirror. Neither one of us was real excited to take the bandages off that were sticking. 

What if it ripped something open?

That is when we switched places and Chance's dad started unwinding the wound while I filmed:)

Getting up close and personal

It was explicitly written in our marriage vow that Chance's dad take care of all potentially painful parental duties and dead things.  He doesn't remember that part, but I do.
I wasn't sick or freaked out by the wound, I had tugged at the bandage a little and it was really stuck on there, and I was worried about doing damage.

Chance was watching this whole process in the mirror, so we didn't want to freak him out or hurt him.

So, now that it is time number three,  we just left those little sticky bandages that were stuck to the wound by blood on until they came off themselves a few days later.  

Those tiny bloody bandages underneath will just come
off when they are good and ready:)
Chance was fine with that, we were fine with that and we just let nature take it's course

We've learned a thing or two over time:)

Sunday, September 30, 2012

Back to 2 Ears Again!

We took the camera with us when Chance's 3rd implant was turned on just like we did with the first and second implants.

With the first two, we wanted to capture Chance's reaction to hearing with an implant for the first time.

We were not disappointed as Chance's facial expressions and audible response conveyed his surprise, delight and wonder at hearing through an implant for the first time.

We did not expect the extreme response with the third activation, that we got with the first two implants.   Chance had only been not hearing at all on the one side for a few weeks, although his hearing was greatly diminished by the failing implant.

We wondered if we would get much of a response at all when the 3rd implant was activated.  Chance delighted us with a wide eyed response of wonder when the implant was turned on.

The audiologist asked if his voice sounded metallic or like a woman's voice to Chance.  Then he noted that a child a few weeks ago commented that the audiologist's voice sounded like he had been sucking helium.
Chance said,"That's it!  That is what your voice sounds like!"

So here is Chance, responding to hearing from implant number three.......

Sunday, September 23, 2012

Two ears, three surgeries

Chance: A little nervous, a little excited
The surgery was a rousing success.  It took about 3 hours which we were not expecting because we figured that the drilling into the skull had already been done during the first implantation.  The surgeon explained that though that made sense, a second surgery actually ended up taking the same amount of time if not a little bit more due to scar tissue etc.

It was interesting to see how Chance's dad and I have evolved over the years with these surgeries.
This third surgery found us taking a walk about around the University of Utah Hospital grounds, where the surgery took place, after eating breakfast.  It was a beautiful day and we had given our cell phone number to the front desk right after Chance went into surgery and they told us they would call us when Chance was done with surgery or if they needed us for any reason.  After our walk about around the University, we sat out in the balcony section of the parents waiting area.  We were completely calm, we were excited for Chance to be getting a second implant that would give him what he needs and we sat reading and waiting until Chance was out of surgery and we were called back to join him.

During the first one, we were a little nervous and tended to stay close to the parents waiting room.  We would wonder aloud where we thought he was in the surgery process, was the implant seated yet?  Was he responding well?  There was a level of  nervous/excitement because we did not know what exactly to expect.  Was Chance going to respond well to being implanted?  How much better would he be able to hear?  How big would the wound be and how much of a difference were we going to see between hearing aids and implant hearing?

As the anesthetic kicked in, Chance said, slurring his speech:
"Take a picture of my aaarrrmmm...."
Then after all of that anticipation, we had to wait another 4 weeks to turn the implant on to find out what would happen.

The second surgery found us more familiar with the process, but it had been a long decision for me to make and I spent a lot of time studying and praying and calling other parents with bilateral kids and seeing if they really saw that much of a difference and if they thought it was worth it.

There was a special moment during that second surgery while walking through a little garden on the hospital grounds that I had a sweet confirmation that the second implant was the right decsion.  I had been wondering about how much the second implant would impact Chance's life and if it would make that much of a difference.  An incredible feeling of excitement went through me strong enough to make me stop and take notice.  I suddenly knew that this second implant would open a new world to Chance and I was excited for him and what lay ahead in his life.

That feeling of confirmation has been felt for 6 years now.  The second implant truly has given Chance advantages in hearing that we could not have anticipated when we were making the decision to implant both ears.  Now that we have had a period of time without that second implant, we have seen so many advantages that Chance gets by having two.  We lived with one implant for two weeks and we noticed a big difference.  I asked Chance if he noticed a difference and he said, 'Ya!" in a tone that added a, "Oh man have I ever!"

Recovery after surgery, waiting for the OK to go home.
I asked Chance if he was hearing everything that he needed to in school and he told me that he wasn't.  I reminded him that he needed to sit so that his working implant was facing the teacher and sit near the front.
When I dropped Chance off at school one day, I told him a few times when kids had said "hi" to him because he kept walking and hadn't noticed.

Chance has had more questions about what is going on in class while wearing only one implant and at home, we have had more questions about what is going on around him as well.
We love that second implant. It makes a big difference.
Thankfully, we only had to wait two weeks instead of four to get this one turned on. 

Sunday, September 09, 2012

Two really is better than one...

I have decided to pay attention to what the differences are in Chance's hearing now that one of the implants is not functioning at full capacity.

We don't know exactly what he is hearing out of that left ear, but we do know it is not functioning at full capacity.

Chance says he notices the loss particulary when he listens to his ipod.  He says the left ear is really quiet and isn't hearing much at all.  Listening to an i pod would be a prime opportunity to experience how well your ears are working.  I know we had a couple sets of headphones bouncing around the house for a while and in one set the left earbud was broken.  I picked up that pair to use a few times not realizing one side was broken.  It annoyed me to only have one side working.  Sure, I could hear fine out of the right side, but the music quality and sound was so much better when both earbuds contributed to the sound.  I didn't like to use them and ended up throwing them away.

Chance has started a new school which is quite intense and expects a lot out of the kids.  This is Chance's first year attending so he has to listen and pay attention to the rules and expectations.  He is having to put more effort into hearing what is going on in class and since the environment is new,  he can not rely on what he already knows.  All of teachers are new, the school building is new and all of the students are new to him.

Chance is doing well, though he has been experiencing some anxiety and I can tell that he is making great strides to try and understand and catch everything.  He came home one day and told me that he was only able to complete 3/4 of an assignment in one class and then he said,"I want to get a 4.0 and the teacher would not let me finish the assignment and turn it in later in the day!"

Chance also said that the quizes in class have been hard for him to understand in a few subjects, so we worked out with the special ed teacher that Chance can come in and take quizes in her office if he needs to.

At home, Chance is asking us "what" a lot more often.  He still catches a lot, but both the family and Chance have to claify more often.

I have noticed when we are talking about something that happened at school with his brother or when we are telling a story or recounting an event, Chance asks, "Who? " or  "Now what happened?"  I find I am repeating things much more often.  Just simple things like who is going to the movies or what needs to be done before we can leave the house.

Chance can still hear, and I know that many people have only one implant all of the time.  I have been able to see how having that second implant  adds to and enhances Chance's hearing.  Chance can be more relaxed as he listens with two implants, he doesn't have to work as hard to hear and he just naturally catches more.  Chance also is more bothered by background noise with just one implant.

Chance has been more tired, and I think it has to do with the fact that it is taking more of his brain capacity to hear now.  He fell asleep while doing homework one night which is very unChancelike.  It wasn't just a nodding off either, it was a zoned out dead to the world kind of sleep.

Tuesday, August 28, 2012