Wednesday, February 10, 2010

Nik's Deafness-- part II (CI)

I think I left off after Nik had just had his CI surgery.  I decision hard for any parent.  Especially, us at the time.  What most of you don't know, is that just a few months earlier & a month earlier, our daughter had gone through  a horrible botched surgery job on her arm to fix radial articulation.  She still has permanent damage from it.  So for docs to think we were taking the CI surgery lightly, really ticked me off.  We do an average of 5 to 6 surgeries in our home every year.  I think by now I know the risks of any surgery.  And the CI surgery is risky.  We already know it destroys whatever residual hearing he had.  A risk that you have to consider when doing this surgery.  After surgery came healing. 


This was Nik the day after surgery I think.  It is still really swollen.  His one eye even swelled shut.  But, doesn't take too long for the swelling to go down.  What was hard for Nik to understand was we told him he was getting this surgery so that he could hear.  Never thought to explain to him that his hearing would be gone for a month before he'd hear a thing.  Again, did what we knew how to do.  The surgery really wasn't that bad for him and it was pretty routine now.  He was up and about the next day. 

After healing, we then go to what is called activation day.  The day they turn the device on.  We had 3 implant companies to choose from.  we told them we only cared about durability mostly as most at the time performed the same way.  As I've said before, with FASers in the house, you have things broken all the time.(today, it was my favorite glass)  We wanted to be prepared for anything.  Sure enough, we were right.  More about that later.  Activation day is exciting.  Remember, there is no guarantee the implant will take.  There are some failures.  But in my gut, I knew itwould take.  Here's a scene:

 

This was when we just found out it worked!  Can  you tell I'm a bit excited?  Irina is smiling in the background too and so is Nik.  It was just this overwhelming feeling of relief.  This was his first implant.  He's lost a few in the woods.  This surgery was roughly near $60,000 USD.  Our insurance covered 100%.  We LOVE our healthcare.  I know the media is bashing our healthcare system right now but I have to give praise where praise is due.  We pay our insurance each month and big surgeries like this and Bojan's prosthetic leg are covered 100%.  I just wanted to say I'm grateful for the healthcare our family is able to have.  Let me see if I have a better picture of the implant:

  

This is a more recent shot of his implant.  Kids dont' think twice about it as most kids nowadays have ipods or cell phone pieces or what have you coming out of their head.  The top part is the magnet that sticks to his head.  And yes, Nik sometimes will stick refridgerator magnets on there now that he knows it's a magnet...urghh.  The string like thing that attaches to it is called the coil.  The coil hooks to the processor.  The bottom part is the battery.  The top part that hooks over his ear is where the microphone is.  This device has three settings that can be programmed separately.  When they first put an implant in, they have to gradually get them used to all the new sounds.  This process takes months to tweek it out.  
And the real fun begins.   He did not want to wear this thing.  I kept hearing "force him to wear it", " make him wear it from morning till night," and so on.  I refused to do so.  Why?  Because every time he didn't want to wear it, he'd throw it in the woods.  Keep in mind, we're surrounded by woods, a creek and numerous kinds of creatures back there.  Get this, we drained the ENTIRE pool b/c Alex said Nik threw it in there.  It was green at the time b/c it wasn't opened yet for swimming.  We don't treat it until it is time to open it.  So, drain the pool and Alex says " well, I thought he threw it in there."  URGHH.  We had countless incidents like this.  It has been buried and found.  How?... b/c my boys swept the yard w/ their play metal detector.  Yep, sure did.  I started paying my kids money to find the stupid implant.  Yet, we were being told we weren't trying enough.  URGHH.  Professionals get to me sometimes.  Long story short, he started to use it more.  

I will explain a few more details about what it is like to care for the implant and what life is like with the implant.  Thought I could do this in two posts but this is way too long and Alyona is fighting me on going to bed.  At first when he got the implant, we thought that's it, he's now going to be deaf AND blind(tell you about the blind part later).  It was SO incredibly disheartening to think the thing we put in his head was not going to help him a bit.  Patience is what we needed to learn.  I'm not good at patience.  God only knows how I survived 7 adoptions as they take immense patience.  Slowly though, I kept changing the way I thought about the implant.  Hoping and praying with time it would work.  Also, Nik and I were slolwly learning more sign and getting closer than ever.   I sent him to school reluctantly.  The day I saw the kids in the library from his class leave him b/c he was reading a book, broke my heart.  I was watching from the window.  They had forgotten him like he did not exist.  They were pointing, not talking to him, just pointing.  This was kindergarten last year.  At that point , I was calling on my own to find an interpreter after being lied to by the school that they couldn't find one.  Offered them my list of ones available and everything.  Nik hated school and I couldn't blame him last year.  I made a promise to him that mommy would make it all better.  I fought and we got an interpreter.  After feeling left out all last year, he now has a full time interpreter in school.  He has friends and they talk to him... in sign!  He comes home and tells me what he did in school that day.  He likes school.  AFter all those months of wondering if I had made the wrong decision and I should have sent him away to the deaf school, I realized sometimes you have to take the broken road to get to the smooth highway.  Nik is now a well adusted 7 yo boy.  He's going to a birthday party for one of his classmates next week.  Does she care he's deaf?  No.  He is her friend.  

I will continue this post. Sorry so long.  Next part will be about the care of the CI and his progress and what he can hear.  Yes, I said H-E-A-R.  His deafness will always be a part of who he is for sure, but it will never limit him nor define him.  I've learned so much from this kid and clearly see why he was placed in our path.  I don't question God as much as I used to in regards to Nik.  I know that sounds mean, but in the beginning we were faced w/ such adversity and hardships regarding Nik.  Going from thinking he's just has selective mutism to Usher' Syndrome all within a two month time period, was a little tough to take.  I will say this though, my perception of the deaf-blind totally changed.  I met some awesome , awesome people with Ushers Syndrome so far.  When Ashley came to my house w/ Ushers and showed me her family picture and found out all she did, I knew from that moment, Nik would be okay.  I no longer thought of the deaf-blind as not being able to live a normal life.  That is SO NOT true and such a misconception.  I almost feel embarassed admitting that I once felt that way.  I did remember, the lady that came from the deaf school.  She had taught at the ENCSD for over 30 years.  Great lady  Came to our home on her time.  She told me she thought Nik was very gifted.  She said he acts like the deaf-blind kids she's taught.  She also told me I'd have to fight harder than I'd ever fought to get Nik the help he is supposed to have.  She said I should never stop fighting b/c he's going to be someone someday.  I truly believe that.  This kid that was going to be destined to be tied to a bed in a mental institution all day b/c he couldn't speak & was deaf, was now going to be someone great.  I'll let you know what great thing he does in the future.  Right now, my son is in the bed screaming Alex's name b/c he's tickling him.  Will finish this tomorrow.  Sorry so scattered. 

2 comments:

  1. Stephanie!... Just WOW!!!... and Thankx again!!!... Tough post... I can´t stop crying!... Thanks for the pics THEY ARE PERFECTS!!!... This same device I saw in implanted kids here!... As I´ve never seen Nik´s magnet, I´ve thought it was smaller!...
    What can I add?!... Each time you said what could had happened to him... A cold air runs me through and through!... I do not even want to imagine!... And the other kids reaction... It brakes my heart too!... but I should admit that I was one of them too!... When I was a kid there was a deaf kid in our neighbourhood and I was scared of him!... I don´t know... He was older, he had cleft lip and when we played soccer in the park, he was like signing and screaming at the same time... and that frightened me!... When we get older, I meet him again in the ASL course, he was married with one of our teachers -she was deaf too- and now they have a beautiful daughter!!!... And his father in law is the man who inspired me to adopt a deaf kid!... As you can see our paths were in touch from long time ago!!!... Ok!... Sorry, Now the ramble one was me!!!...
    Kind regards!!!...

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  2. Again - this is better than any adoption seminar! Can this count towards my education? Great post Stephanie!

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