Time for an update!  I'm so encouraged when people reach out to me and tell me that this blog is helping them with their own hearing journey.  What a gift- to not only hear but to helps others at important touch points along their path.

Much has happened over the last couple of years.  We now live in Tennessee.  And what an adventure it has been!  We made the decision for me to pursue a doctorate degree and it required a move to make it happen.  School has changed in many ways over the last 20 years.  Technology has advanced education and increased opportunities.  Yet, hearing challenges remain.  The Student Disability Office is my friend and provides the accommodations I need to help me successfully complete a PhD program.  

I am loving my program and loving the bursts of knowledge I'm gaining.  COVID has been rough on my studies but I'm finding ways to work with it.  It has opened the door for an important study I am working on for the hearing loss community.  Soon, I'll share the details with y'all :)

My son recently was fit with a really cool set of hearing aids that are perfect for his type of loss.  Despite all the masking going on in his classroom, he is thriving and following along with his teachers.  I appreciate good technology and appreciate the journeys of all those who have gone before us that allow us the be the recipients of such wonderful technology.

Blow Dryer-less

I woke up this morning feeling compelled to write a post in this blog.  Probably so that I can do some mental processing!

15 days ago, my ear drum in my left ear (non CI ear) ruptured.  Super, super painful.  But worse than the pain is it killed the little hearing I had left.  I don't know if it will come back after my ear drum fully heals or not.  Though that little hearing didn't do much on it's own, combined with my hearing aid and my CI, I was doing so, so well!  But now, my hearing aid is completely useless as there is nothing to amplify.

I realized today that I can no longer hear the blow dryer when I'm drying my hair.  I can feel it.  But I can't hear it.  That was the one thing left I could hear with my natural hearing.  Now that's gone, at least temporarily, but possibly permanently.

Without my hearing aid, the CI alone has made sounds a bit mechanical again.  After two weeks of not balancing it out with my hearing aid, it's finally normalizing in sound.  So in quiet environments, I'm doing almost as well as I was with my hearing aid.

However, enter in sound and it's much harder.  I've thought after getting my left ear implanted for years but the timing was never right.  The last two weeks, I've had the thought of a second implant almost constantly.

My surgeon is no longer practicing in Utah.  I'm not exactly sure what happened to him.  I'm meeting with a different surgeon on May 22 to consult with him about a second implant.  A lot of things would have to line up for it to work out.   My top 3 concerns are balance, cost and yet another surgical procedure.

The journey to sound continues!

Four Years

Our most recent family picture.  My little people are growing up!

Merry Christmas!  It's such a wonderful (and stressful) time of year.  I'm enjoying the sounds of the holidays and still am in awe that I actually turn on the radio in the car.  It's been nearly 4 years since my CI surgery.  4 years!  I have become so used to my bionic hearing, that I now forget sometimes that I am deaf.  Of course, there are little reminders all the time that my hearing is not perfect (like when I am helping in a kindergarten classroom full of noise) but I am SO incredibly happy with the many, MANY things I hear every single day.

Some of my recent favorites include: Hearing an ad on a radio station advertising a computer deal (when I just happened to be in the market for a new computer), listening to the lists of things my children want for Christmas, enjoying group games at a recent Christmas party and listening to a speech while I was multi-tasking on my phone (yes, sometimes I can multi-task though my husband does not believe it :).  It's also pretty amazing that I can hear the front door open at work and hear the sounds of movement coming down the hallway.

There are sounds that I would be okay without hearing (does anyone enjoy listening to a 2 year old scream??) but I still try to be grateful for the less pleasant sounds (after all, I am very fortunate to have that 2 year old!).

I still dream of getting my left ear implanted.  But I will wait until my children are older.  I do not want to risk more balance issues right now.  I'm hoping that my insurance company will soon approve an upgrade to the most recent processor (the outside component of a CI) as the new ones have even better technology.  Likely it will take quite a bit of time for that approval.  But in the meantime, I will continue to enjoy the incredible gift of hearing.

Vulnerability

Earlier this week, Cochlear Americas shared my story on their blog.  The positive response has amazed me.  I find it SO interesting that I have gone from hiding behind my hearing loss to opening myself up to the world in such a short amount of time.  Though it also makes me feel quite vulnerable, I am grateful to have a voice.

I have been asked to serve on the outreach committee so that I can communicate with those who are considering a CI.  I am thrilled for this opportunity to give back, even just a little bit.  Observing and talking with others who have received a CI is what gave me the courage to go through with it.  I am thankful every day that they paved the way for me.  Hopefully, my journey can help some others have the courage to become bionic.

This month marks my 3 year activation anniversary.  I continue to struggle every day with missing something (today I had to ask a man 3 times to repeat himself when he was asking me a question) but overall, I am conquering the hearing world all day long!

My son was recently fitted with his first pair of hearing aids.  It's been a bittersweet adjustment for him (and for me!).  He HATED them the first month, tolerated the second month and is starting to see the value in this third month.  I am so proud of him but my heart breaks every time he says "I don't have hearing loss!"    Darn genetics!

Arise

Guess what friends??  I started a private practice!  I know, I know, I am crazy.  I have 3 little kids I adore that need as much attention as I can give them.  I have this crazy, random, illness that threatens to take away my functioning (Meniere's Disease).  However, I need to work part time to contribute to the family finances.  So if I need to work anyways, why not work for myself, right?

Best decision ever!  (Well, not really "ever" but it's been a super great decision.)  It was a ton of work (I've been missing in action for the past few months getting it ready) but I opened on August 1, 2014.  In the two months I've been open, I have been able to help several people.  I am definitely feeling very blessed.

One of my goals has been to certify in sandtray therapy.  I've used sandtray for years but decided to take the classes to certify.  Part of the certification process has been to build my own sandtrays.  It's interesting how hearing loss has impacted EVERY area of my life and that came out in the sand.  I've spent my life trying to "prove" myself.  When you have to work harder, think smarter, avoid effectively, fake your way through conversations, manage constant anxiety and constantly try to fill in the blanks, you tend to have to prove your competency again and again.  What the sand taught me is that I've already proven myself, I do not have to keep trying to.  That was very liberating.  I am enough.  (And so are YOU!)

So many doors have opened to me since getting my Master's degree and licensing as a therapist.  Even more doors have opened since getting a CI.  One of these days I'll tell you the meaning behind my business name.  But enough for now, I've got dishes to do and a company to build :)

My Boys

Baby Sean is now 9 months old and sporting a helmet these days.  His head is misshaped due to some complications of infancy.  The helmet is working so well.  And he looks adorable in it.  AND it protects his head from every bump and fall.  Score :)  Joshua is now 4 and a half.  Just before Sean was born, Joshua was diagnosed with hearing loss.  I've suspected it for a while but we weren't sure if it was ear infection related and would be cured with tubes.  Well, he no longer has ear infections but still has hearing loss.  It sucks.  The last thing I wanted to pass on to my children is my hearing loss.  Right now, it's a mild loss.  But that's how it starts with us.  Mild loss can still impact your life in negative ways.  It's affected Joshua's speech, his ability to hear whispers and music, and speech in noise.  I've been preparing him for hearing aids.  He SO does not want hearing aids. {sigh}

The school district audiologist is AWESOME.  Love her.  I appreciate that Joshua's life is starting to fill up with helping, caring, knowledgeable helping professionals.  My guilt is starting to subside.  A little.  He will not start kindergarten until 2015 and will for sure have hearing aids before then.  In the mean time, I am still working on preparing him.  There are a  lot of sorrows ahead.  Lessons too.  I know he will be okay and I am so, so grateful he has a happy-go-lucky personality.  It will help him!

Pregnancy and Hearing Loss

My belly at 25ish weeks

The countdown is on.  Two weeks to go and we get to meet our little boy.  Maybe we'll even have a name for him by then.  This whole naming your child thing is so difficult!  As I've said before and as I'll say again, pregnancy wrecks havoc on our bodies.  Is it worth it?  Absolutely!!!!! 

This time around, with a CI, my pregnancy experience has been a little different.  I've heard the baby's heart beat sooner.  When meeting when the ultrasound tech, it was not as much work to understand everything she was saying about how baby is doing.  Scheduling appointments for the ultrasound and doctor and everything else has been way easier.  I have understood the nurses better when they ask me questions or turn around to write something in the chart while speaking to me.  Overall, my stress levels are just lower than they have been with my previous pregnancies.

I've been thinking about how delivery will go.  Since I have csections, I basically know what to expect and know what I need.  However, laying down can pop the CI magnet off my head.  I don't want to be worried about keeping it on or fixing it constantly.  I think I'll experiment with a headband over it to see if it stays in place while being operated on.  I'm also curious about how I will do in OR with the medical staff all having masks over their mouths.  I'm looking forward to the experience with my new hearing abilities to see if I pick up more on what they are saying.  I'm excited to see my little guy!

May Updates

Though my posts are infrequent, I am still getting a ton of hits on this blog.  So I will continue to occasionally post.  I hope I am giving the encouragement that people need to consider CI's.  It still frustrates me that most Audi's won't recommend them and when asked downplay how beneficial they are.  Ugh.  These bionic bits of technology are incredible.  My quality of life has improved in powerful and miraculous ways.

I continue to be incredibly busy (who isn't?!!).  Just trying to keep my life balanced between my family, church, job and volunteer responsibilities.  This pregnancy has been a little harder on me physically.  I'm not exactly a "young" pregnant woman!  I also have taken on additional responsibilities at work which takes a toll on me physically.  The adoption manager is on maternity leave so I am filling in for her until she returns.  My own caseload has decreased but my work load has significantly increased.  I work more hours.  I deal with higher stress situations.  But my hearing is not a roadblock in any of it really.  I have to talk on the phone.  A lot!  Every time I take a call I still send a silent prayer above pleading for help with hearing.  Time after time, I am amazed that I managed the call successfully.  There is an occasional person I struggle with understanding but the large majority I can do quite well with.  I just never expected to be this successful with a CI.  I was hopeful, but didn't allow myself to expect more than "slight improvement."

When the time is right, I'll get my left ear implanted.  Until then, I'm going to appreciate what I can hear every second of my life!

March Updates

I just wanted to post a quick update to the blog as it has been a while.  I am still doing awesomely amazing considering how deaf I was a year and a half ago.  My life has changed so very much.  Some of my recent successes:

-Hearing a speech given in a microphone in the church gym while I was in the back.  I also was turned away from the speaker and helping myself to seconds on the food table.  I heard every word.

-Being able to successfully eavesdrop on a conversation happening down the hall from me.  It was a very boring subject, office computers, but still I could hear them!!

-Hearing some song lyrics without needing to follow the words.  Though this is still rare, I occassionaly hear a song very clearly and it MAKES my day.  I am really loving Maroon 5 and Christina Perri for this reason.

-I'm successfully using the phone to call doctors, make appointments, talk to clients, etc.  Wow, has this made my life a zillion times easier.  I still use an ALD and maybe always will but still am super happy about it.

-Successfully navigating the public school world as I am learning how to register my daughter for kindergarten, arranging assessments and becoming familiar with school staff.

All in all, just fantastic.  But I'm still hard of hearing.  I still miss things.  I still have challenges.  I'm nowhere near as anxious about them but just keep trying to work on them.  My biggest challenge continues to be the volunteer work I do for church.  I work with the teenage girls and my oh my do they have soft voices.  I'm hoping my constant request that they repeat themselves helps give them the courage and confidence to let themselves be heard.

And by the way, I'm pregnant.  I'm having a boy and we are all super thrilled about it.  He should be coming in mid August :)

One Year Anniversary

On January 5, 2013, it was my one year activation anniversary.  I had the best of intentions to write an entire post about the year's journey.  Not going to happen!  Instead I am just going to put links of the journey so that anyone interested can just click and read on what they want to read.

Surgery

Activation Day

My husband's version of activation day

The hardest phase of being newly activated

Back to work

Hearing human again

Hearing test at 2 months post activation

3 months out

8 months post activation

The benefits of a CI to a mom

The Holidays

Here are the lovely 17 people I had in my home for three weeks over the holidays.  I know it's already February but I just barely feel like I am starting to catch up!

First, my successes.  I first picked up my older brother and his family from the airport.  They flew in from Italy.  I understood my brother and his wife very well.  Their kids, not so much because their accents are so thick.  However, I did well enough that I probably heard at least ten times that night "I can't believe you just heard me say that!"  Score!  Next I picked up my younger brother and his family from the aiport.  They also commented several times they could not believe how well I was hearing them.  The true test came home on the way home from the aiport.  It was 12:30 at night.  We were all tired.  My sister in law, Anyi, talked to me from the seat behind me most of the trip back.  She would ask me a question and I could respond correctly.  I asked her questions and could hear a response.  She did have to repeat herself a couple of different times but overall, we were able to converse pretty freely.  One reason why this is so amazing is because I never once could read her lips or facial expressions as I was driving and she was behind me.  Another reason why this is so amazing is because she is from the Dominican Republic and has a very strong accent.  (I have a very international family, I am the only one who married an American, though marriage to a man from Rexburg, Idaho certainly feels like I married a foriegner sometimes!)

I'll admit it.  I absolutely loved how much they complimented my new hearing abilities.  It was so fun.  Surprisingly, all the background noise of 9 kids did not take away from my ability to take part in conversations.  I felt so connected to my family and so much more invested in the happenings around me.

After everyone went home, the clean up process and room restoration process began.  Within a coule of days, the kids got sick.  Very sick.  They just had the flu (Influenza B if you want to get technical) but it was a horrible version of the flu and it knocked them out for days and days and days!  They are now back to normal and we are now starting to resume and get back to normal again.  So now it's time to do some catch up on the blog.

Erin

I have a dear niece who I rarely see, Erin.  She lives in Italy.  The last time my brother (her dad) and his family came to visit was about two and a half years ago.  I distinctly remember standing at the sink doing the dishes and my niece, Erin, trying to talk to me.  I was struggling trying to hear her.  She sighed (I don't have to hear THE sigh to know THE sigh, I've gotten it from many many people).  She said "Aunt Kristel, I wish you could hear me."  I responded "I know Erin, I wish I could to."  And then I cried.

My brother is coming for Christmas.  They are staying with us for three weeks and are flying in this Thursday.  I can't stop thinking about Erin.  She's 9 now.  I do not know if she remembers how bad my hearing was.  But I hope that she still wants to talk to me and I hope that I can hear her!!

Both of my brothers and their families have not seen me since getting the implant.  They and their families are so excited to see me in person and see how well I am doing.  But it makes me nervous, I hope they are not disappointed!

Regardless of how well I do, after three weeks of 17 people in my house, we'll see if I still want my CI. Hahaha!

Pandora is my Friend!

Music is so complicated.  I seriously don't understand how people can hear it clearly.  Especially when there are multiple instruments and/or voices.  It just might take the rest of my life to train my ear to music.  Good thing I've got a long life ahead of me ;)

I've learned some things about myself on this music journey.  I don't have the patience for slow songs.  I want a beat and I want the words to come fast.  Haha.  You likely would not believe it, but I have been caught listening to rap a time or two.  Pandora is AWESOME because I can follow the lyrics along with the song.  Don't worry, I skip the inappropriate ones.  I like country because it is simple.  One voice (usually) with few instruments and the songs are always about love or breakups of some sort.  I also really like Maroon 5 and Matchbox something or other.  I don't even know what genre they are.  Yep, I'm that clueless when it comes to music!  I like Taylor Swift but can only handle a couple of songs at a time.

As I type this, I'm listening to Nat King Cole Holiday station on Pandora.  I know a lot of Christmas music but the same conditions apply.  I like simple, clear lyrics that are not made complicated with a lot of instruments.  Maybe I'll be able to expand one day but for now I'm thrilled :)

If anyone out there can suggest groups that often sing with a fast beat AND clean lyrics, I would love to hear about them!

Gratitude

Tis the Season to be grateful.  Honestly, I feel grateful every day.  I remember well this time last year how isolated and anxious I felt each day.  So much has changed in the last year for me.  I rarely feel lonely.  I rarely feel anxious about communicating.  I am sooooo lucky!!!  The greatest benefit to my hearing abilities is understanding my children.  Here's just a few examples:

The other night while I was sitting on the couch in the living room talking with Evan, I heard the sweet voice of Joshua (my three year old) singing from the bathroom "I better watch out, I better not shout, SANTA CLAUS is coming to TOWN!"

While Aleah (my four year old) and I were watching a movie, Joshua was helping Evan make dinner.  I heard Joshua say "I love you daddy" but Evan was not paying attention and didn't respond to him.  Because I heard Joshua, I prompted Evan to respond.

At dinner the other night, Joshua was saying the prayer.  He expressed thanks to Heavenly Father for himself, his daddy, his mommy, grandma, Aleah, plates, cups, spoons, bowls, rice, olives, lettuce, meat, chips and water.  Then he repeated himself three times.  I heard the whole thing.  It was adorable.  The only thing he wasn't grateful for were the tomatoes.  :)

Yesterday I was downstairs sewing and I heard Aleah upstairs calling to me from her bedroom, which is upstairs.  She needed help and I was able to quickly respond.

I overheard Aleah and Joshua telling their dinosaurs "you are being naughty and have to go to time out!"  Hahahaha.

Whenever we go outside and there is snow, the kids immediately run away from me yelling "let's make snow angels" and then throw themselves down in the snow.  What I love is that I can hear them as they are running away from me.  It's amazing to hear without having to lipread.

This is a special Thanksgiving for me.  My heart is so full of thanks for all of those who helped make my journey back to hearing possible.  I'm grateful for the gift of being hard of hearing again. 

Success!

Walk day was so much fun!  I only got a couple of pictures so I will try to post some more when I get them from my fellow planners.  Above is k's krew!  We were a small team this year but we were a mighty one :)

Evan sponsored the walk.  He has been working on his own business part time.  Check him out: www.evanscoresby.com

We had over 300 walkers come and participate.  There was such a positive energy at the park.  We had a fun program with a professional entertainer-- Marky the funny guy who does tricks.  And of course we had good food :)  We had several teams, including large teams that were named after one baby in a family born deaf.  The walk unifies group from all across the hearing loss spectrum.  So fun!  We raised about $20,000.  Whoo hoo!!  Half of it goes to National HLAA for their programs and advocacy (they are the ones that got cell phones and tv's accessible to us).  The rest goes for walk expenses and local needs.  We provide assistive listening devices to those who can not afford them (those little suckers are pricey!) and other ways to help people remain connected to the hearing world.  Thanks to everyone for your support!!

Why I Walk

Our family during the first walk in 2010

This Saturday is the third annual Walk4Hearing in Salt Lake City.  Each year I have been on the planning committee to help pull off a great walk.  I am often asked why I give so much time to it when I am so busy.  Here's my answer :)

Hearing loss is isolating.  Imagine a world where voices are garbled, unclear, confusing.  It's just so much easier to stay home and isolate yourself than try to put 1000% effort into hearing a conversation that's not "required."  Required would be a conversation that is work related, health related or child related.

Hearing loss is frustrating.  For most of us with hearing loss, our brain works just fine.  We have talents and abilities we want to contribute.  But to contribute, you have to hear!  For example, I just happen to be trained as a therapist.  I know a thing or two about how to help a person who is feeling suicidal.  I remember when a friend of mine was feeling pretty low and pretty desperate.  She was in such a dire state that she was hardly speaking coherently.  The more I tried to understand what she was saying to I could help her, the less she spoke.  My ears just wouldn't work well enough for me to do a darn thing.  I walked away from that feeling so useless (by the way, she is fine now!)

Hearing loss is hidden.  Millions of people have hearing loss.  MILLIONS.  But you wouldn't know it.  Why?  Because many of us hide it.  We don't want to be "different."  We don't want to be "incompetent."  We don't want to be "less than" or considered "disabled."  So we don't learn how to accomodate.  We don't learn how to speak up.  We don't learn how to accept our hearing loss, let alone be able to see the good in it.

It's time to step up!  It's time for those of us with hearing loss to stop hiding and rejoin the world.  It's time for us to learn and access the technology that will help us to contribute.  This is why I walk.  I want other people with hearing loss to put their hair up and show their hearing aids or their cochlear implants.  I want to find those who have isolated themselves and bring them back into a community who is willing to help and accomodate them.  I want people who are afraid of technology to demo it and become comfortable with it.  Hearing loss affects our jobs, our families, our friends, our hobbies, our entertainment and our self worth.  Let's do something about it!

Please consider donating to the walk.  We are raising money to help people with hearing loss and we are GOOD at helping people with hearing loss.  Thank you for stepping up with me :)

http://hlaa.convio.net/site/TR/Teamraiser/SaltLakeCityWalk?px=1152975&pg=personal&fr_id=1996

k's krew 2010

k's krew 2011

My New Adventure

Drum roll please..........

My music training has begun!  I'm immersing myself in MUSIC.  I haven't willingly listened to music since I was 15 and obsessed with replaying the cassette soundtrack to Robin Hood: Prince of Thieves over and over and over.  Everything I do.....I do it for YOU.......

For 20 years I have avoided music like the plague.  It was noisy, distracting and got in the way of communication with people.  I never imagined I would WANT to listen to music again.

But now I am bionic.  And it is time to integrate music into my soul.  I won't lie.  It's hard.  How anyone can understand lyrics is beyond me.  But I'm beginning to learn this new language and I'm excited about it! 

Please, share with me what songs you want me to listen to.  What song would you want to introduce to a person who hasn't truly heard music for 20 years?  I'm listening.....

Mild Loss??

The greatest thing happened today. I was at an adoptive couples house doing a home study and they asked me when I started losing hearing. I told them that it's genetic and that I was four. They then said "you do very well, it must be just a mild loss?" What a compliment! They were shocked when I told them I was practically deaf. To communicate so well that people think my hearing loss is minimal is just amazing to me!

8 Month Update

I'm doing AWESOME!!  I can't even begin to describe the miracles that occur in my world of sound on a daily basis.  I can answer questions from my kids from a different room.  I can hear the loud speaker at Joann's call for the next number.  My phone comprehension has improved dramatically (still just with the neckloop but I'll take it!).  I can understand the messages of talk radio.  The stress has just melted off me these last few months.  My hearing is nowhere near normal but I feel like the richest person in the world right now :)

Unfortunately I've had some complications.  I've struggled these last few weeks with balance issues.  It is getting better but it's been pretty debilitating.  Also, the right side of my face has been twitching due to corresponding sound entering the processor.  We have remapped and remapped and examined and ct scanned and researched.  The current theory is that it is hormone related.  Go figure.  We are waiting for my hormones to stabilize.  I do think it's related because things have been improving.  Honestly, I'm hesitant to share this part of what's been going on because I don't want to scare away those considering CI's.  But the truth is that a CI is a risk and you need to go in with your eyes wide open.  I would still do it again even with these complications. 

However, these happenings have led me to postpone my second surgery.  It is just not a good idea to alter my inner ear equilibrium on the left side right now.  But even more than that, I don't feel right about it.  I wish I did.  But God has a bigger plan than what I can understand.  Trusting Him has always blessed me more than going with my own Will.  I will just keep giving praise every day for the gift I have been given and continue to work on improving that gift.

Folk Fest

Every summer, my home town has a World Folk Fest in which they invite countries from all over the world to perform traditional dances.  It's such a fun event.  I went this past week and noticed a huge contrast from last year.  Not from the performance but from my ability to hear sounds.  Music is not a strength for me yet.  I'll be working on that for awhile.  But the miracle of the night was that I actually enjoyed the music.  It didn't sound like noise.  It sounded pretty and truimphant.  And even more amazing was I heard the announcements over the loud speakers.  As the hosts introduced the dance companies, they explained the dances too.  I knew what to expect when the dancers came out.  Understanding  if it was a rain dance or a love dance or a harvest dance brought a whole new meaning to the symbolism of the dances.  It's difficult to describe how I feel about the glory of sound.  Suffice it to say that I feel like I'm the luckiest girl on earth!