Thursday, May 19, 2011

What the...

and yes, I could really add a few explicits but have decided to refrain since this is a family space and regardless of how good it feels to sometimes verbally express your frustrations...I know it's wrong;)

In addition, my child has been saying this all the time...(minus the fill in the blank aspect).
She was upstairs in her room when I heard it for the first time...
"What the..."

I followed it up with the motherly..."sweetLove, I don't want to hear you say that again.  Where did you hear that?"  She replies..."school, Drew says it all the time, it's funny momma!"
SHEW...glad it was from Drew and I and her father do not have to take the blame for that one!

However, as I was sitting in our littleLovers therapy this morning reviewing all we have learned from this past week...I called his daddy and said it...

What the...
(we both laughed)
So my sweetLove is is funny!

But, before I update you all on what is going on with our sweet boy let me share a little of last weekend with pictures of course!

We went to the Lake...BOOYAHH!
(that was the words of my sweet girl of course)

We ate.
We relaxed.
We jumped.
We surfed.
We swam.
We flew.
We drove.
We visited.
We played peek-a-boo.
We went for long rides.
We built forts.
We fished.
We loved.
We squealed.
We discovered the loch ness monster.
We "loched" her up.
(momma and daddy got tired!)
On Sunday before we left, I sat on the deck and prayed.  
Mostly for direction.
My dreams of having a little boy, looked a lot like this...  

legs poking out of shorts, skinned knees, shoes untied...

I love him.
And I am uncertain of the right decisions for him.

We got a second opinion this week.  It was important due to the results we received from his CT/MRI.  If you are new can catch up by reading this.

Currently, our littleLover is at the Atlanta Speech School participating in their audio/verbal program.  Basically what that means is we are doing our best to teach him to communicate through listening and talking ONLY.  He wears hearing aids and is doing well.  He hears and responds with them, but is stuck in low frequency ranges.  
What does that mean?
To make it simple, if you look at the graph below, everything to the right of 1000Hz he does not hear and will not be able to speak.  With his degree of hearing loss, this is pretty normal and the best it will get with hearing aids.  If we accept this...he will have "deaf" speech and as a family we will communicate through signing.

Our other option is to proceed with cochlear implants.  To many, it would seem like this is a no brainer.  But, our littleLover does not have normal anatomy.  From the CT/MRI results, the option of a implant in the left ear is non-existent.  There is no hearing nerve.  That leaves us with the right ear.  But, if we choose to implant the right ear and something goes wrong...he loses it all.  He will hear NOTHING.

A second opinion was important.  We took him to Dr. Todd at Emory.  He is the most experienced and we were told he is the most conservative.

His suggestions were as follows:
He would not implant the right ear.  
Instead, we will go to Ann Arbor, MI, to have his left ear tested for a hearing nerve.  
Why Ann Arbor?
He is the only doctor in the world doing this proceedure.  There is no "commercialized" equipment currently on the market.  This Doc built his own.
It was explained that the canal running from the cochlea to the brain was there.
Just because we do not see the nerve in the CT/MRI does not necessarily mean it is not there.
We are going to make the trip in hopes there is nerve and it is stable (that is a whole different explanation that I will spare you from).

Best case scenerio:
There is a nerve, it is stable...we will proceed with a cochlear implant.

Chris and I have come to this conclusion:
If there is a stable nerve, we will implant the left ear.
If there is not...we walk away.
Teach him to get the most out of his hearing aids and start signing.

I learned today that there are other anatomical issues and the reasoning behind why Dr. Todd would not advise us to implant his right ear.  His cochlea are not normal.  A normal cochlea has 2.5 both cochlea, he only has 1.5 turns.  Some kids have very successful implants with this being the case, some do not.  Hence Dr. Todd's apprehension to proceed on the right ear.  

Dr. Todd also told us he has some recognizable MILD signs and symptoms of CHARGE Syndrome.
If you are interested you can read more on that here.

We hear the same thing at every appointment..."He is so good!  So calm, most kids aren't like this!"

As I was researching CHARGE Syndrome I came across this:

One of the hidden features of CHARGE Syndrome is the determination 
and strong character these children display.

I couldn't have explained my sweet boy any better!

So...from where I am standing

life isn't easy...

but it's good!

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