Wednesday, August 3, 2011

Let's play catch up...

...where did we leave off with my littleLover?

Oh yeah, Michigan!
Oh goodness, lets start with the plane ride north...AWFUL.
[Speaking of the word far, it is one of my favorite signs!]

Ok...the 1.5 hour plane ride turned into 5.5 hours.  Total bummer!
We boarded the plane, sat on the tarmac for an hour due to a storm passing through ATL...
finally got in the air, circled Cleveland for 2.5 hours due to a storm in Detroit.
Thank you Jesus the sweet gentleman beside us had 4 kids...
he slept through 2.5 hours of continuous crying by our sweet boy!
[Another side note:  He has no volume control.  I always wondered if me and myLove just produce loud children or if there was reasoning behind the insane volume coming from such a small boy, who is deaf.
Thank God.  It has been confirmed, he can't hear himself.  So, lady in the store who commented on my poor behaved, loud totally deserved my frustrated mom comment which sounded a little unkind...
"He's deaf.  He can't hear himself."  In which she quickly shuttered which I then should have kept my mouth shut, but I just couldn't..."Bet you wish you could take that judgement back don't you?"  
She said nothing and I walked out of the store frustrated with myself repeating over and over again in my head

I'm glad I don't have PERFECT kids, because I am NOT perfect myself!

Back to MI...
Dr. Kileny found a nerve in his left ear.  It is not completely stable, but it is implantable.
The right ear is good to go, stable, perfectly implantable!

He suggested we implant the left ear first (finally, two doctors agree on something) and continue intense AV therapy.  Then in 6-8 months we would then make the decision, if we felt it was necessary, to proceed with the second implant in his right ear.

I don't think I will ever be 100% sure what is the right thing to do.
I am praying that God gives us wisdom and a VERY, CLEAR PATH.

We do have a surgery date scheduled and we also have had the opportunity to sit down with a family who's child has almost identical anatomy as our littleLover.  He just had his 2nd successful implant,  not without a few complications, but they are very happy with the end result.

I have come to value these conversation with other parents in similar situations.  Very few understand what it takes to get to the "first step".  It is exhausting, overwhelming, trying, heart wrenching...

But, it is what it is.
I have come to accept the standard..."Everything is going to be alright" or "I know it will all work out"
as what they are intended to be...simple words of encouragement.

July was good. 
 We were bad.
Most of our therapies were put on hold due to vacations, company, etc.
I did very little "ling" sounds with him and he wore his "one" hearing aid very little ...
[Forgot to tell you, they took his left hearing aid away due to his original MRI results indicating there was no nerve.]

I should tell you that our sweet, perfect, little man kept pulling them out and ripped his ear mold, so keeping them in has been that much more difficult.  We order his very own right hearing aid on Monday and new molds, so he has no clue what is a comin'!!

But, non the less...
he just got to be a little boy for a month,

Let's talk about signing for a moment...
like I said, when you enter the world of AV therapy they do not like signing.
I have read the research.
I agree with some of it...

But, I've never fully been on board with the concept of  NO SIGNING!
So, when K started getting frustrated and was unhappy to the point of being miserable...
I said enough...we started a sign class and started signing with him.

It's hard when your kid is 19mo old and you can not communicate with him at all. 
Signing changed that.  He tells me when he poops, is thirsty, hungry, wants more...
He lays on the couch for his signing time movies and repeats every sign...
He grabs his signing books and can sign every page...
It's so natural for him and as a momma watching it unfold is overwhelming good!

So, regardless of us deciding to implant and teaching him to hear and speak...he will continue to sign.

This approach is called Total Communication.
It works for us!

Last Monday was a bit of a downer!
He had 3 "seizure like" episodes.
Pediatrician sent us to a Neurologist.
Neurologist does not think they are typical seizures, rather episodes related to vertigo and his overall ear anatomy.  He explained his musculature is hypotonic, more therapy needed but was over all impressed with our little guys abilities and over all responses.  
But...this has led to an obscene amount of appointments to check, re-check, further diagnose, blah, blah, blah...

That brings us to today, well almost.
The day after the neurology appointment, his surgeon called wanting to push the date of his implant up.  He is leaving the country a couple days after the original surgery date and does not feel comfortable performing the surgery and then leaving the country if something were to go wrong.

I don't know doc...let me see if he'll fit you in?

...still thinking
....I think we're gonna have to get back to ya!

1 comment:

  1. My 16 month old is also deaf and we go to Linda too! She is so loud it is ridiculous. She just has her first implant. When it is not on, she is louder than she used to be when she wasn't wearing her hearing aids. We want to start signing with her, but are having trouble with the best way to approach it since it is not recommended by AV therapists. COuld you make some recommendations?