Tuesday, February 9, 2010

Nik's Deafness-- part I (CI)

If you haven't guessed it by now, this post is going to be about Nik.  Nik is currently our youngest son at 7 years old.  He is in kindergarten and has friends in his class.  He plays with his brothers and sisters.  Fits in perfectly with this family.  Oh yeh, Nik happens to be Deaf.  This may be a long post but feel it is necessary.  Many wonder why we chose to adopt a deaf child.  Umm, we didn't.  He chose us!  We chose to adopt a child who just happen to turn out deaf.  I want this post to be a little about special needs but more about what it means to have a deaf child, how to cope with that  and what we've learned from it.  I guess I'll start from the beginning so be prepared. 

Towards the end of the year when we adopted Bojan, I kept feeling that "tug" again to bring home more children.  I think we've all been there in some form or fashion.  That is when I found Alyona online but she had a hold status by her name.  Didn't clear up until March of '06.  I waited.  I signed on w/ the agency in April & told them I'd have approval for 2 children but wanted the other one to be as young as possible as I still had longed for that baby.  On the sheet of what I would and would not accept as disabilities, I checked off that I could handle anything at all EXCEPT for deafness and blindness.  Oh, the irony of it all!  The reason I did that was b/c we did not know one single bit of sign language and thought we'd be a terrible family for a deaf child since we wouldn't know how to speak to them.  They said, we found a boy that I think would be perfect for you.  Kicker is that he HAS to be out by October or he's getting sent to the mental institution when he turns 4yo.  Here is what they sent me:

 

and this one:

 

The agency wrote me & said I don't know what is wrong w/ him.  I wrote back these exact words:  "I don't care what is wrong with him, he is MY son!"   A few days later they told me he was mute due to trauma.  Researched selective mutism and realized that was a need we could deal with.  Long story short, get to Russia and I turn to my husband and said "I think he's deaf."  No, can't be.  Not our new little boy.  No way he could have gone four years w/out someone noticing this issue.  No, not our boy.  Do you sense a form of denial here folks? 

Got him home and got him settled in.  Or, so we thought.  The constant screaming was almost too much to handle.  We didn't want to admit that to anyone however, as we were "experienced" parents.  Not us, no.  We definitely could handle our own child, right?  LOL.  Again, with every adoption has brought us some great learning experiences.  This was indeed one of them.  I kept asking what was wrong with him from many people.  I had many write me back and say autism.  I kept thinking to myself, I don't think so.  

Finally, testing came.  Thought I'd have some answers at least.  Not more questions.  We went to UNC Chapel Hill, NC for what is supposed to be one of the best audiology departments.  They tried to tell us he had only mild to moderate loss.  Umm, I don't think so and you're testing him wrong.  I told them you KNOW audiology, I KNOW PI kids and how they will test.  They are basically "trained" at the orphanages how to be tested.  That is why when you first get home, they will a lot of times test higher than what they truly are mentally.  One of my children has an IQ of 58.  When first home, they tested in the 90's for IQ.  They are amazing at "reading" what is to come next.  This is what Nik did on the hearing test.  Yes, he's going to look for those stupid animals lighting up in the background b/c he is seeking out the stimulation and newness of it all.  I left w/ a dx of mild to moderate hearing loss yet had a gut feeling something just wasn't right.  There had to be more to it than that.  They told my husband they'd test him w/ an ABR(sedated of course) but were not expecting to find anything at all out of hte ordinary. They said there's this one thing called auditory neuropathy but it is rare really.  Fine.  Long story short, after the ABR, my husband was greeted by one of the audiologists.  She said remember when I told you about that thing called Auditory Neuropathy?  Well, Nik has that.  We went onto have another wave of I don't knows from many professionals.  Most have never heard of that diagnosis.  Basically, it is as though our son has a permanent "snow sounding " channel in his head.  He never hears the same sound twice.  Say "baa" and he could possibly here it as one or two syllables.  Hear it as shh, maa, or baa.  There's no consistency with this disorder whatsoever.  It is a chaotic nerve response.  Very frustrating.  He can hear me call his name one day and the very next day hear nothing whatsoever.  We then went to Duke for a second opinion.  Touted as one of the top notch hospitals in the nation.  But the bedside manner I got htere, I could do without.  Sufice it to say, they were not very nice.  They were not interested in answering many of my questions and told me, he just has a "simple vanilla hearing loss."  Oh, how wrong that woman was!  See, with AN, it can get better or progressively worse.  Since he was older, and not improving, chances are it was going to get worse.  It did by the way.  A child with AN can test fine one day and really deaf the next.  It's nuts the no consistency part.  Imagine having different channels going on in your head all the time.  I'm telling you, I highly adsmire my son.  I swear if I had this happening in my head, I honestly couldn't live with it.  I wish I had the link to an audio.  It shows what AN kids hear.  It is eye opening.  My son is brave just for waking up to this crazy life altering disorder.  I can not phathom having to deal with that every single day.  

While we were doing more research on AN, Nik was fitted with hearing aids.  He kept yanking them out, we had professionals tell us we were lying about his usage!  yes, we sure did.  Nik hated those things and we finally figured out why from other gourps online and older AN kids.  All the hearing aids were doing was amplifying the chaotic sounds that AN kids hear.  Making chaotic noise even louder.  How horrible for a kid.  Trying to adjust to new life in America while having parents fail miserably at what was going on with him.  Well, after much, much research , we discovered AN kids do phenominally well with implants.  We pushed, and pushed and they were VERY reluctant.  Very.  Didn't care.  Nik had moderate loss in the left ear and severe to profound loss on hte right ear all due to auditory neuropathy.  Remember, AN kids can test differently each time.  We knew this was what he needed.  His time was running out too.  We are told that after age 5, the ability to learn language significantly drops.  He was 6 at the time.  We didn't care.  We knew this was best for him.  Hearing aids, he threw away in the woods all the time.  For some reason though, my gut said this will work.  

So, we prepared for surgery.  


 

Once all the CI(cochlear implant) clearances were made, we were headed off to surgery.  This is Nik before pre-op.  no idea what was about to happen or how his life would change forever.  We tried to explain as best we could to him that he would NOT be able to hear after surgery.  That he would be deaf forever in that ear.  This was his first surgery.  He's seen many of his siblings go through surgery but this was a first for him.

 

My camera hog right after surgery.  He tried his best to smile.  That head bandage was supposed to stay on a few days.  No, it didn't make it but a day.  We'd been through enough surgeries in our home though to know how to do wound care.  This is an outpatient procedure.  You are not there long at all.  They cut open right behind his skull and put a magnet in his had.  It's the size of about a quarter.  Amazing technology for sure.

 

This is just to me an angel sleeping.  He just looks so peaceful.  The jacket next to him is mine.  He finds comfort in it for whatever reason.   Nik puts it on whenever he gets the chance.  Recovery was pretty quick.  The real challenge was in months to come.  Mixed bad advice from professionals and uncharted waters for us.  For now, he sleeps innocently.   Not fully understanding why whatever crazy hearing he had in that ear is now gone forever.  Did we do the right thing?  We're we wrong to push?  Will he ever hear?  He had to heal for a month before they were allowed to turn him on.  Called activation day.  More about that & the learning process of a CI.  Another post tomorrow.  

3 comments:

  1. Stephanie!!!... THANK YOU, THANK YOU SOOO MUCH for this post!!!... Poor little angel!!!... I´ve read about those sounds... And I´ve listened too!... And I can swear it could turn MAD any human been!!!...
    Thanks GOD!, HE put him in your path ...and now we can see this BRAVE little cute playing basketball and happy smiling in every single pic!!!... It´s unbelievable how the MATERNAL instinct fights for her SONS needs!!!...
    THANKS again!!!... And please give him a HUGE HUG for me!!!... I´ll wait anxious for further information!...
    Kind regards from ARG.

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  2. Thank you so much for this info Stephanie. We are considering a deaf child. Maybe the reverse hosting program???!!! We are all learning sign language anyway! Our 4 yr old little girl is the best! Look forward to add'l info!

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  3. What an amazing story and little guy. You know whats best for your kids! Looking forward to more....

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