Chance's other job

Chance's job helping to teach little kids to swim has come to an end.  He literally became the best buddy of a little boy in the class who would go to no one but Chance.  He asked Chance on the last day of class if he could give him a hug.  His grandparents and parents told Chance that he was a household topic of conversation at their house because the little boy just loved him and was always talking about him. Chance really liked his job and was good at working with the kids. Maybe he'll apply to be a swim aid again next year.

Chance waiting for his next group of students

In the meantime.....Chance got another job!  He had turned in an application to be a soccer ref for the city leagues when he turned in his application for the swim aid job.  He got a call back on that application a few weeks ago.  When the lady called about the job, she called out of the blue and Chance didn't know who he was talking to and he didn't have any context at first about who was calling.  Because of this, Chance's naturally chipper disposition didn't come through and he was more mechanical on the phone.  The lady calling didn't get a real feel for Chance's personality over the phone which can make a difference when they want someone who is cheerful and good at working with kids.  She called him in for an interview anyway, and I sent Chance into the rec center while I waited in the parking lot.  He came back out about 25 minutes later with a new hire packet.  Linda really seemed to like Chance and she paired him up with another 14 year old boy to coach the first soccer game who happens to be a friend of Chance's from his competitive soccer team.

Linda called our home to talk to Chance a few days later and the captions weren't working so he was having a hard time understanding her.  Chance's dad got on the phone and explained that Chance was having a hard time on the phone that day due to the lack of captioning and could he relay the message.  Then Linda said,"I didn't realize Chance was deaf!"

Chance's implants were obviously not the first thing she noticed about Chance during the job interview.  She didn't seem to notice them at all.   When Chance first went into interview, I remember thinking that I hoped whoever interviewed him realized that he was fully capable to ref soccer and that his deafness would not interfere
with his ability to do that at all.  Apparently, my wish was granted as Linda didn't even realize that Chance was deaf.

Chance wears a pin on the backpack he takes to work that says,"Ask me about my implants." Obviously he is not shy about talking about them.  I just want people to see Chance for who he is and not focus on what they think he might not be able to do because he is deaf.  Apparently, people are doing just that:)

Chance getting wild and crazy with his brother and cousins.

Deja'vu

We are having deja'vu here at our house.  Once upon a time, we had a little boy who was deaf and we started writing about his journey.  Now, we have another boy losing his hearing and we are experiencing many of the same situations that we did with Chance.

We have gotten MRI's done.  Two of them.  Both came out clear with no indication of why our son would be losing his hearing.

We have been to several doctors, all of whom do not know why our son is losing hearing.  Chance was already deaf when we started taking him to doctors, but they never could tell us why he couldn't hear.

We have many many medical appointments, hearing tests and various other things related to figuring out what the needs of our son are, just like we did with Chance.

Insurance still doesn't see hearing loss as something that should be covered by insurance so hearing tests, hearing aids and various other things related to hearing loss are not covered by insurance.  We just went on the same insurance that we had when Chance was diagnosed a few months before our other son started losing his hearing.

I run around a lot from various doctor appointments to hearing tests to eye checks, to blood draws, to MRI's to hearing aid appointments to......well you get the picture.

Having a deaf child is not the worst thing that could happen.  We love our Chance and he is a great blessing to our family.

We want to understand though where we can, what is causing our son's hearing loss.

We have met  with a rheumatologist and she is treating our son with steroids for the next few weeks. We are looking to see if the cause of his hearing loss is an auto-immune disease where the immune system, for some unknown reason attacks a healthy ear.   The idea is that when you go on steroids,  they suppress the immune system and will disrupt your immune system from attacking healthy tissue.

We shall see what happens.  We had a hearing test done right before he went on steroids, then we will do a round of steroids for two weeks. and have a hearing test done with in the last few days that he is on steroids. If the cause of the hearing loss is an-auto immune response, then we should see an improvement in the hearing while on the medications.

We have talked to a family whose son has this condition and their son started out much like our son has. First one ear starts to loose hearing rapidly.  If there is no intervention, then the other ear starts to loose hearing as well.  Our son has one ear that has marked loss every time we have a hearing test. His right ear is borderline needing a hearing aid.  If the steroids do indeed help, we should see an improvement in hearing while on the medication. There is a window though where the loss must be addressed. Once the hearing has fallen all the way, you can not get any of it back.

We are just waiting to see.  Meanwhile, common side effects of the steroids, are being cranky and not sleeping well. That is a potent combination for a kid.

Just as we did with Chance, we need to explore all of our options and tell our son that we did all that we could to help him.

Having another deaf or hard of hearing child would not be bad.  We know the journey well.  But when a loss suddenly starts and there may be something that can be done to stop it, we have to give it a try.

Camping Adventures

Chance has not commented on how his canoe trip went, or how he feels about hearing under water.  He will though, he will.

We went camping and did not have access to technology.  It was rather nice actually. It was us, the trees, the lake, a tent, and the squirrel that kept running over to our fire pit and trying to steal any food that may have been left there.  He was a professional food stealer that Squirrel. He ran into camp while we were all sitting there, his little body like a pint size torpedo.  Then he would jump into our fire pit(we never actually used that fire pit as we joined family at theirs at the camp spot next door), poke his head up and look at us all, and then dash back into the trees. It was a delightful little ritual.

Chance slept with his cousin in a tent.  They claimed to have stayed up until 4:00 a.m.  Chance was a little cranky the next day, so he may have stayed up practically all night.  Many members of the extended family got to see what it is like to wake Chance up in the morning.  Chance's reaction was a little more severe than normal, as his brother decided to help wake him up with a little water. All of the kids had a meal they were supposed to help prepare, and Chance had breakfast that morning so his brother was waking him up to come help at camp.

Brother's don't like it when wake them up with water whether they can hear or not.  Our whole extended family heard Chance yelling at his brother to stop and giving him a piece of his mind.  Heck,  the campsites on either side of us may have heard him.  Later, Chance told us he had no idea how loud he had been.

We know.  When Chance can not hear himself,  he can be loud.

I think we all took away from this episode, that no one really likes to be woken up with water. To Chance's credit, when he crawled into the family tent the next morning with a cup of water to get revenge, he stopped when his brother, all curled up in his sleeping bag, asked him to stop and didn't even sprinkle a drop of water on him.

Chance goes on a canoe trip

Chance would be the best person to talk about how his canoe trip went.  He is going to tell us all about it on this blog in a few days too.

For now, I will share what I have heard about this once in a lifetime trip.  Chance and his scout troop headed down to the southern end of our state to canoe for 70 miles through some of the most beautiful country that God has to offer.

There were 26 people in total, 9 leaders and 17 boys.  They were matched into groups of two to share a canoe and then they spend the next three days bonding as they glided, and fought rapids down the river.  The rapids were a bit of a surprise and I have to give all of those males credit for taking on rapids in a canoe.

Chance's partner was his dad since he was on the trip as a leader.  This was a handy situation for Chance since he could do things like hand his implant to his canoe mate when he wanted to jump into the river and take a swim.  I said implant because Chance used only one implant for much of the trip. He had the two kinds of water protectors for his implants and he really preferred one over the other, but he only had one of those.  His favorite was the more expensive option. Naturally.  Kids always like the more expensive model right?:)

Obviously there were some precautions taken so that Chance's implant did not take off into the river on it's own during brawls with rapids or when there were strenuous moment trying to get the canoe to shore against the current to camp.

I do know that Chance's implant ran out of battery power about half hour before the group got to the part of the river where they got out.  Chance's dad asked him if that bothered him, and Chance said no.  Chance's dad then asked if he liked floating down the river in silence and Chance nodded that he did. I can imagine that the ability to silently take in all of the beauty and majesty of the scenery must have been an almost reverent experience for Chance.

I will blog more about what I know about this canoe trip that Chance will remember forever, but I want to give him an opportunity to share his experience first.

In the meantime, here are some stock photos (thanks google search) of the area where they were at:

A second time around

I started this blog to talk about Chance and his journey to hear through his deafness.  Last month Chance had a routine mapping appointment that had been scheduled for months.  His appointment just happened to fall on a day that I would be attending Women's Conference with friends. So my brave husband took most of our kids to the appointment himself.

I was sitting at Women's Conference listening to a speaker when a text came through on my cell phone. Normally I wouldn't pay attention to my phone during a class, but my cell phone was in my hand as I was getting something out of my bag.  When I realized that it was my hubby, I looked to see what he said because I knew he wouldn't text me at Women's Conference unless it was important.  This is what I read:

"Our son is measuring at a moderate to severe hearing loss."

Now, Chance has a hearing loss of course, but this text wasn't about Chance.  It was about one of my other kids.

I just sat there staring at the screen.

Then I texted back something profound like, "Wow."

Then I didn't hear from my husband again.  So when class was over, I tried to call him.  He didn't answer.

You can't just text a mother and tell her that her son has hearing loss and then not answer the phone!

Actually, the logical part of my brain knew what was happening at that moment where my husband was in the audiologists office.  I have been to many such appointments in my lifetime.  I knew the audiologist was running my son through the sounds again or he was talking to my husband about the results of the hearing test.

I texted my husband with, "I know that you are busy but I am dying here call me when you can."

He texted back with "Sorry, I will call you in a minute."

We didn't have texting like this when Chance was diagnosed 11 years ago.

I then went to my next class and started making a fairy wand as part of a humanitarian project.  I have to admit that I was a little distracted and I needed to be able to focus on the instructions for making that fairy wand since I am not a natural at sewing.  Luckily,  there were some women at my table making the same fairy wands so I watched what they were doing and followed.

My phone started to ring, and I dashed out of the room to catch the call.

I had lots of questions like, "NOW WHAT ARE WE TALKING ABOUT HERE?  WASN'T THIS CHANCE'S APPOINTMENT?" Along with:

"Do both ears have a loss?"

"How big of a loss are we talking about again?"

"Will he need hearing aids?"

"Why do they think he has a loss?"

"How is our son taking it?"

"What happened there........how did one of our other kids get into the hearing booth?"

My husband opened up with the whole story.  Our youngest son has been telling us that he can not hear as well out of his left ear.  I actually had made a note to myself to call the school district to have him tested.  Chance's dad just asked the audiologist at the implant appointment if he could test our other son as he had mentioned that he was not hearing as well out of his left ear.

Turns out there was a reason he hasn't been hearing as well out of that ear.

As our son sat in the booth having his hearing tested, my husband was sitting behind the audiologist watching him mark down the results.  Since we are people that are quite familiar with audiograms, my husband knew right away that the left ear had developed some issues.  The left ear was testing at a moderate loss.  Since that initial appointment when the hearing loss was discovered,  the loss has continued to fall.  The fall has been like this:

First visit the loss in the left ear was 50-55db across 500-4000 Hz, dropping to 70-80db in both ears at 6000 and 8000 Hz.  His right ear was between 0 and 10 except for the 6000+Hz range.

Two weeks later his left ear had dropped about 10db across the board, to about 60db up to 4000Hz, then 80 to 90db in both ears at 6000-8000Hz.  His right ear also dropped - now sitting at about 20db loss except for the dive in the 6000+ Hz range.

Another two weeks later showed another 10db loss:  Left ear hitting up to 70 db in some frequencies, and the upper ranges are now 85-90 db.  The right ear now sits at 25-30 db across the board, then 80-85 db at 6000+ Hz.

So, we are in the process of getting MRI's done, seeing doctors and having hearing tests.  We are trying to figure out what is happening to our son's hearing.  The first MRI didn't give us any information, so we had another one done a few days ago that went more in depth. That MRI didn't reveal any reason for the loss either.  We will meet with doctors at a hearing clinic in July to see if they have any ideas about why the hearing is dropping and if there is anything that we can do about it.  Our son went on a round of steroids but his hearing loss continued.

For now, we have a hearing aid on his left ear, and we are watching the right ear.  We have another hearing test scheduled in July and we will see where the loss falls then.

It is like deja-vu.  We have gone through this with hearing loss before.  The difference is, when we found out that Chance had hearing loss, he was already deaf, whether the loss happened all at once or dropped over time, we don't know.  Right now, we are watching a loss that just continues to drop every couple of weeks.  With Chance we didn't watch his hearing drop.

I still have some of the original questions that I had when we started and hopefully we'll find some answers.

Now we have both implants and hearing aids in the house, something we've have never had before.  We are becoming reacquainted with hearing aids again.  They can't get wet at all.  Condensation can build up in the tube leading into the mold and then you need to suction it out.

One person with hearing loss in our house wears their hearing device all day only taking it off to sleep and shower.  The other person with a hearing device takes their device off at times and has to be reminded to put it back on.  I'll let you guess who is who:)

We Love the Caption Phone

Chance and I love the caption phone.  Chance loves it because he can read what is being said and it makes it easier for him to understand when people call.

Chance has a CaptionCall phone like this

I  love it because I get to capture little gems of conversation like you will see below.

Let me set the scene.  Chance gets a call from his cousin who is the other pea in his pod.  I am watching this scroll down the screen as they talk:

"Chance, do you have a pass to the water park?  Because guess what?  My mom said maybe you can come with us. Um, I will call you about the details again.  It is going to be Monday or Wednesday and it is probably going to be an all day thing and my parents say we can go off on our own.
And we can flirt with girls, heck ya!  You like that sound?"

Gee, it is so hard to figure out what is going through the minds of teenagers these days when you have a caption phone.

It is a little like being a spy.  Only you don't have to have any special sort of skill to figure out what is going down.

Chance's doesn't know yet that his aunt invited me to join them at the water park this week.   So that means Chance will have his mom there too.  I wonder if that will impact the flirting.  I hope so:)

Aqua accessories to the rescue!

I should probably talk about what the "dohickies" are that I mentioned in my last post.  The "dohickies" are actually the aqua accessory by Cochlear Ltd.   We (well OK, Chance), are also using the aqua+.  What are these aqua things you may wonder.  

The aqua accessory is an envelope that fits around the implant.  The entire implant goes into an implant ziploc-type bag.  This protects the implant from water.  Each envelope can be used once. 

courtesy of http://mycochlearimplantjourney.wordpress.com

The aqua+ is a new coil and a sleeve that goes over the whole processor.  You can use this sleeve 50 times. (each kit has two sleeves, so good for about 100 uses).   It does cost (significantly) more up front, so we bought one to test it out - one kit works for one implant, so if you want to use it for bilaterals, it means buying two kits.

Rather than coming soon, this is actually here now!

Chance will have much to report on both aqua products in the next few weeks as his job as an official assistant swim instructor starts tomorrow.  Luckily, Chance has some siblings that will be attending swim lessons during part of the summer so I can take pictures of Chance's siblings.  And Chance on the job:)  They will all be in the same pool, I may as well just get pictures of everyone.  I see a swimming scrapbook page in our future. 

Chance is really excited about this job.  He did training for a few hours on Saturday, and tomorrow the actual kids arrive for lessons.  Each swim session lasts for two weeks.  Every two weeks a new group of kids will arrive to learn to swim.  Chance could be teaching anyone to swim from babies (with their parents) to older kids learning to dive.  The classes he helps to teach will vary according to need. 

Chance will get up at the crack of dawn (or before) for swim team., then stay at the pool to teach lessons all morning.  We will need to stock up on sunscreen.  Chance is not tan.  Not even a little bit.  He has an awesome stingray swim shirt that he inherited from his older brother though, so that should help with sun protection.

On a side note, Chance asked me if taxes would be taken out before he got his paycheck.  I assured him that the government would make sure that they got their share before Chance even sees money in any form from a job.  I didn't quite say it like that, but I did assure him that all taxes would be taken out before he received any sort of payment. 

 

The job

Chance had his first training for his new job.  He will be a teacher's aid and help with swimming lessons at our local pool.

That's right, Chance who wears implants, will be spending his mornings in a pool.  Filled with water and splashing children.  Teaching children how to swim.  Chance doesn't see any boundaries to what he can do with implants and I go with him on that.  That boy can do anything he wants.

Chance's implants can take some water, but we also got him these snazzy little dohickies that fit over his implants to help protect them.  Chance will be in the pool, helping a teacher teach little kids to swim.  Some of these little kids did not come up with the idea to learn to swim on their own and are being forced to learn by their parents.  They will cry, kick, hit the water with their hands and otherwise do all sorts of things that could get implants wet.

Little dohickies

Come to think of it, Chance first learned to swim against his will, and he cried, kicked and hit the water with his hands, all while looking at me in despair and holding out his arms to me.  But Chance had to learn to swim.  Chance out of all of my children, would be able to hear me the least when we were around any kind of water.  He needed to know how to swim at least a little and not just sink like a log to the bottom of a pool.  It was a hard go, I must admit.  Chance didn't want to learn to swim at first.  Heck, he didn't even want to be in the water with his teacher.  So guess what happened?  The teacher's aid would work with Chance and help him by gently having him do what the rest of the class was doing.  She knew he was deaf, and she worked with him by demonstrating what he needed to do.

It was rather heartbreaking as Chance called out to me during swimming lessons

Now Chance will come full circle and help other hapless children who are in swim lessons against their will.  Some of the kids love swim lessons and look forward to it every day.  Chance got to the point where he loved swim lessons and looked forward to them.  It didn't happen that first year though.

I am so excited for Chance.  He is really good at working with kids and he genuinely likes them and they like him back.  I think he will do a great job and the kids will love him.  AND, we get to try out these little dohickies on Chance' implants.  He is really excited about using them.  His dream is to swim underwater and hear what the rest of us hear and see what it is like to have sound when he is swimming.

The season is over

Chance's soccer team took 4th place in the state.  Each game this week was a nail bitter and two of the games went into over time.  One game went into double over time and ended with the kick offs.  Chance's team won that one.  It was intense, and all week was like that.  Each game came down to the last minute.

One of the highlights, was when Chance kicked the assist to his best friend and then his friend made his first goal ever in a game.  It was like they knew what the other one was thinking.

They didn't loose any games until the 3rd day, and then they lost the 4th day as well, with a goal made by the other team just as the buzzer blew.

I am telling you, watching the games was incredible and there was never a dull moment.  The team is so close and they will remember this year in soccer forever. Their coach said they are the best team she has ever had. I wonder if she still feels that way since Chance arranged for a 5 gallon bucket of water to be poured over her head when the season was over:)

CHANCE GOT A JOB!!

He starts training later today and I will give a full report.  He is so excited. There were many kids that applied for this job and only 5 slots.  CHANCE WAS ONE OF THOSE 5! YIPPEE!

I will write more about Chance's job when he gets home and tells me how it went:)

Chance's team is ready to rumble

Chance's school soccer team has played well this year.  So well that they are ranked 2nd and will have tournament games all week this week.  They will have the home team advantage too since all of the games will be played at their school (until the final, assuming the 1-seed wins to that point too).

Chance's school has amazing school spirit and several teachers and parents are always found in the crowd cheering the kids on.

Chance has some amazing friends on the soccer team and they are a tight group that have each others' backs.

There is a wall at school marking each goal that has been made by the team this year and the name of the player who made the goal, along with the names of the assists, where appropriate (and remembered). Chance's name is listed on some of those papers and he has had a great season. His coaches said that he was one of the best conditioned on the team.  That made Chance very happy.  He can now kick well with his left foot as well as his right foot which he is quite excited about.

Chance's county soccer league just ended for the season and will pick up again in the fall.  As soon as the school soccer season ends, Chance will begin swim team and be getting up at 6:15 each morning to swim. There is no such thing as sleeping in for Chance through the summer.  But that is okay, he loves to swim. and stay active.

Go Chance Go!

Where are all the other players

Get the ball Chance! Chance is in the orange and yellow cleats

We are all excited for the tournament this week and wish the team all the best! Go team!