Wednesday, April 20, 2011

Our littleLover.

20 months...
So much going on for such a little guy!
Whew...where do I start?

November 2010
A follow-up ABR confirmed a profound hearing loss in his left ear and came with a new diagnosis of a severe to profound hearing loss in his right ear.

Our littleLover is deaf.
Our new life quickly took over.
Between November 19-December 22 we had 24 appointments...
doctors, therapists, schools...

He received his first pair of loner hearing aids in November.

We are overwhelmed...but so in love with our sweet boy.
God made him perfect.
Sweet smile, silly giggle, snugly, and ornery (the only way we know how to make em'!)
He quickly learns that his sissy is no-joke and he made it clear he was not "SKEERED"!

January 2011

His respiratory issues that we had been dealing with on-and-off were now starting to be a nuisance!
2 CT/MRI's had been scheduled and cancelled due to his breathing difficulties.
I will not even go into the night mare that entailed.  Every time one of these appointments were cancelled I spent HOURS on the phone rescheduling other appointments.
We found ourselves admitted in the hospital again after another flare-up.
Momma is now beyond frustrated.
Enter another doctor...the Pulmonologist.

Let me just ask you a quick question...
Have you ever LICKED your child?

Sounds like a silly question...but I have!
His forehead while I was feeding him.
His feet after I would change a diaper.
His neck after a quick kiss.
I did this for 2 weeks solid.

I thought you would never ask!
Before the pulmonologist left our room room, she informed us she ordered a sweat test.
To shorten this is a test for Cystic Fibrosis.
She then says "don't look it up and don't get too worried, but he does have some of the signs and symptoms and his blood work indicated...."
I heard nothing after that.
It took us two weeks to get in for the test...and a few hours for the results.
Those 2 weeks were maddening.
Of course I looked it up.
Pulled research.
Read research.
And I licked him.
He never tasted salty.
The test was NEGATIVE.  

February 2011
We start thereapy at The Atlanta Speech School.
Mrs. Linda, his therapist, well I would call her "our" therapist 
was sent straight from Heaven!
Another CT/MRI is cancelled.
A pulmonologist appointment...
and an ENT appointment later...
we are now on the same page that his adenoids need to be removed (maybe his tonsils).

I have also between Christmas and here made 3 trips home to be with MY momma.
The last trip lasted for 3 weeks with one quick return home for the pulmonologist appointment.
She loses her battle to breast cancer.
I just lost my mom.

Let me just stop for a sec.
I am not complaining.
I do not want anyone to feel sorry for me or us.
I do not want a different life.
I do not want a son that has perfect hearing.
And I am not going to say that I do not want my mom back...
because I want her back everyday!
This has just been our life.
God never promised a life without pain or sorrow.

March 2011
CT/MRI appointment #4-cancelled due to newly scheduled adenoid removal. 
Adenoid-possible Tonsil removal - cancelled due to fever, ear infection, elevated breathing rate.

March 28 successful adenoid and tonsil removal.
March 29 an emergency response team is called to his room they work him for 45 minutes.
He spends 2 days in the ICU and another in a step down unit for observation.

April 2011
Two weeks of miserable recovery.
I remember questioning the doctor as to why, if we knew his tonsils were inflamed would we not "definitely" go ahead and remove them to prevent another surgery down the road.
His answer...
it is a hard surgery for babies to recover from.
I believe I rolled my eyes because I was more concerned with another "possible" surgery down the line.
The doc was 110% correct.  
From one mother...if it is not a NECESSITY, DO NOT REMOVE TONSILS!
I held him constantly for eleven days...while he held his throat, refused to eat and we syringed (forced) water and pain medication into him.
When you get tired of seeing your baby miserable...combine what they love!
In our littleLovers case that would be his momma and a bath...

it worked!  
That sweet smile that had been hiding for days!
Even better...throw sissy in the mix and we are sure to have a party!

momma never gets tired of that!

April 14 CT/MRI attempt #5 was a SUCCESS!
It was supposed to last about 1 1/2 of course took us 5 hours.
He's a wiggly little bugger!

Today I received a call from his ENT with the results from the scan.
He begins by explaining that our littleLovers scans were abnormal.
REALLY? (insert sarcasm)
Here is how I will sum up our 45 minute conversation.
First let me start with this...the ear has two functions,
hearing and balance.
What was abnormal?
Our littleLover does not have either (right or left ear) semicircular canals.
They are not there.
What are they?
They play a vital role in equilibrium, movement and visual reflex.
Moving on...
There are 4 main nerves in that region cochlear, facial and 2 nerves that help with balance.
In his left ear, the only nerve that is functioning is his facial nerve.
Meaning...a cochlear implant in that ear is not an option.
In his right ear, the cochlear, facial and 1 balance nerve is active.
We do have an option of a cochlear implant.

Where do we go from here?
Intense physical therapy.
Will he ever walk?
I can't answer that question, neither could he.
My gut is telling me Yes...and I am learning to follow my gut.
Plus...and cover your ears if you can't handle it...
I am getting really pissed off!
The more pissed I get...the more determined I get!
I was laughing with a friend this morning and shared with her how I am dealing with it all...
When talking to my mom on the phone if she sensed I was getting a defeatest attitude her advice would be

"put your big girl panties on sis and deal with it"
So, that is where we are.
In addition, we are getting a second opinion in terms of the cochlear implant before we make our final decision and move forward.

Do you want to hear the good news?
Both facial nerves are in tact and functioning.
What a gift!

That was my first thought after hanging up the phone.
You see...
I can live with the possibility of never fully "hearing" his voice and with the possibility that his mobility will be impaired...
But I could not imagine one day without that sweet smile!

...and to my sweet boy,

as you crawled into the middle of the floor tonight trying so hard to balance on your hands and feet and slowly lifted your torso into an upright position...
momma didn't see you quickly fall on your booty,
 momma saw the fight in you...
the excitement in your eyes that you were so close...
you had your "big boy undies on" and I promise momma does too!
I can already see you running into my arms!
Love you baby!

1 comment:

  1. In the words of a classic Journey song Mike Rucker would say "Don't Stop Believing". I am amazed by your strength and faith in God every time I read a new blog entry.