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!

"Never Give Up"

My son LOVES Dora and goes around the house chanting one of her phrases "Never Give Up."  It's really cute to hear him say it.  He's been developing this new skill to be able to replace words with others in his vocabulary.  So when he learned the song "My flag, my flag" for Independence Day, he went around the house singing the tune but changing the words to "My blanky, my blanky" or "My slide, my slide." 

The other night, I was laying down next to him reading him a book.  After the book, I started to get up.  He put his arm around me so I couldn't get up and started chanting "Never Get Up, Never Get up."  It cracked me up.  Last night, way past his bedtime, he tried getting up and I told him if I had to get up and put him back to bed I was going to shut the door.  He again started chanting "Never Get Up, Never Get Up" as he went running down the hall back to bed.  I just think he's so clever for using this phrase but changing it to meet different situations.

Then I realized something this morning.  I can hear the subtle change between "never give up" to "never get up."  That's not something I would have caught before.  I would have thought the whole time he was chanting "never give up."  I would have missed his developing skill set!  Sweet!

Debilitating Deafness

Recently I took a last minute trip to California to say goodbye to my grandma who was in ICU and not expected to live much longer.  I'm grateful I had the chance to say goodbye before she passed away.  I was able to spend quite a bit of time with the extended family, something I have not done in years.  Being with them kind of broke my heart.  I have one aunt who has normal hearing.  The entire rest of the family has profound nerve deafness.  They can not hear a thing.  They couldn't hear the doctors or the nurses or each other.  My mom and my aunts and my uncle just were lost about everything.  Sometimes they thought they heard something right but in reality they had totally misinterpreted.  And the information being exchanged was very important.  So of course everyone was super loud and resorted to writing notes back and forth on the white board.  The family could not understand me when I spoke.  I tried signing with them (I took 4 semesters of ASL when I was going to college but only remember some of it).  None of them know sign.  It was just a sad, stressful situation to be in for everyone.  When you visit someone in ICU you have to pick up a phone and talk with a nurse.  You have to answer their questions right for them to let you in.  But you have to hear questions to answer them, right?  Because of the prevalance of hearing loss in the visitors that week, the nurses stopped asking us questions.  They just opened the door for us.  I'm sad that the current technology was not available to my mom's family in their prime.  I wish I could give them all a CI.  They don't want one but I still wish I could give them one!

Grandma Virgie

My mom and the extended fam

It's really quite shocking how strong genetics are.  My sis now has a hearing loss.  My brothers don't yet but they could still develop it.  I suspect one of my nieces has a hearing loss and I'm sure my children will develop it.  We are just going to keep perpetuating this weak gene.  I truly hope, though, that my generation and those younger will be able to utilize all of the amazing technology that is available so we can still function in a hearing world.

Fred

This post is going to be dedicated to my father in law.  But before I get to that, I want to answer Melissa's question about water (yes, I am listening :).  So the implant consists of two devices.  One device is literally implanted inside my head.  It can not work without the external device on.  The external device is called the processor.  The processor attaches to my head through a magnet.  So I have to be cautious about the water when I am wearing the processor.  I don't wear the processor in the shower.  I put it on after I get ready for the day.  After it's on, it can handle being rained on or splashed on and it won't cause any issues.  Water does not affect the internal piece at all.  Does that answer?

So.  About Fred.  He's Evan's Dad.  And apparently he's hillarious.  I assume that because he's always saying things and people laugh (well, there may just be more eye rolling than laughter).  But I haven't actually known if he really is funny or not because in the 7 years I've been married to his son, I have hardly heard his actual voice.  I see his mouth open, I know something is coming out of it but I usually just stare at him and try to make out what it is he is saying.  I miss all the little things he says under his breath when we are playing Rummy.  I told Evan that I would truly know if the implant was successful if I could hear his dad (or his brothers, they pretty much have the quietest voices on the planet).  Last time the inlaws were down, in April, I was a little disappointed I couldn't hear Fred very well still.

But guess what!  Fred and Wanda (my mother-in-law who has always had the patience of a saint and has always accomodated me in every way) are here for the weekend.  And for the first time in seven years, I actually understood Fred.  Seriously!  Every time he opens his mouth and I hear him, I immediately say "I just heard you!!"  I am sure he'll be sick of it by the end of the weekend but I think another miracle has occurred.  He has a voice, a real one!!  I can hear him now!  I even heard him mutter under his breath when I kicked his trash in Rummy!!  (Just had to put that in Fred :)  I even heard him whisper!

And yes, he is funny.  But what's even funnier than what he says is how he reacts when others think he's funny.  He LOVES it!

Here's Fred and Wanda with Joshua.

I love my CI!  My quality of life has improved in a thousand ways.

One more thing.  Another miracle is that I am starting to do well on the phone.  Not directly.  But through the neckloop.  I haven't used internet captioning for a couple of weeks now.  Whoo HOOOOOOO!

The Pool

Recently I got an email from Cochlear stating that it was safe to wear the processor when near water and that it's just fine to be splashed.  As long as you don't swim underwater with the implant, it's water resistant.  The email had an example of a woman who wore her implant to water aerobics.  I've always had to take my hearing aids out when swimming and have always felt very vulnerable in the water.  I spend all of my energy looking for visual cues constantly as I can not rely on any auditory cues.  I was excited to get this email and learn about what you could do with the processor.

So I thought I would try it out.  I've now taken the kids swimming twice at our HOA pool and have worn the CI.  Holy Cow!  Water sounds beautiful.  Splashing water doesn't sound all that great.  But gliding water sounds wonderful!  It sounds peaceful and calming.  And the bubbling water in the hot tub from the jets sounds pretty great too.

It was amazing to hear my kids play in the water.  I was thrilled to hear their laughter as they splashed each other and to hear them call out "mommy, watch me" when doing something funny.  For the rest of my life, I will be able to hear the sounds of the swimming pool.  I will be able to communicate with people.  And eventually Cochlear will make a processor that you can swim underwater in.  I'm so grateful for this amazing technology.  What a blessing that I got it now, when my kids are young.  I'm not going to miss any of their lives and I'm so excited!

I'm really looking forward to the second CI now.  Sounds just get better and better. 

The Suitcase

I don't think I've ever shared pictures of my CI suitcase.  This is what came with my processor when I was activated in January (5 months ago exactly!).  The suitcase has lots of information and equipment and it can be a bit overwhelming to understand how all of it works.  Tonight I attended a meeting with a Cochlear rep to have the suitcase explained.  I had an ulterior motive for attending which I will explain at a later point.  But I'm glad I went because it was really helpful.  One of the things that the rep discussed was how high your sensitivity should be set on your remote.  I keep my sensitivity on a 1 or 2 (out of a scale of 0-20) because upping it causes distortion.  The rep said that audiologists try to keep the level at 12.  Research says at level 12 you can understand what you need to within a large range.  I've never tried to put mine any higher than 5 or 6.  So I thought I would experiment and changed my sensitivity to a 12.  It was distorted for a minute but calmed down.  So I left it on when I came home.  Of course the kids voices drove me crazy.  But I heard my phone chime with a text message from a different room.  It was very clear, as if my phone was right in front of me.  I tell you what, this equipment is so fascinating!  We'll see how long I can stand keeping it at 12!

What I Still Hope For

Everyone's been talking about this video but I have put off watching it for one reason.  Online videos are not captioned.  I rarely understand a video.  Then I got an email from pinterest today declaring this video the best of all videos on pinterest.  So I thought I would watch it and try it out.  Disappointed.....again.  I get it was a proposal.  I get it was a song.  I get all the family and friends were dancing to a song.  I have no idea what the song was or what the lyrics were or what people were mouthing.  But you know, I am pretty sure her body language said she accepted the proposal.

I really, really, really hope that one day I can understand more than just body language in a video!

p.s. Here's the video
http://pinterest.com/pin/242068548691593290/?e_t=f129ad2a082c4d38ae35a83b6a44095a&e_t_s=highlight&utm_source=sendgrid.com&utm_medium=email&utm_campaign=weekly_weekly_subject_recommendations