Joey- Can You Hear Us? The Long Awaited ABR & Wrecking Ball Contest

Joey- Can You Hear Us?

For a number of reasons tomorrow has been in the works for quite a long time.  Joey passed his newborn hearing test, but has not been able to successfully pass a hearing test since.  In November he had tubes put in to help alleviate the fluid in his middle ears and to hopefully help him pass the hearing test.  Still no success.  Since November we have been trying to schedule his Auditory Brainstem Response Evaluation (ABR), but it has been a little bit of a struggle to get it done.  Typically an ABR can be done with the child under a "twilight" sedation and sometimes the mom or dad can even hold the child in their arms while the child is tested. The hospital Joey is having his test at requires that children with congenital heart defects (ASD/Mitral Valve for Sweet Baby Joe) and/or Down syndrome have to have their ABR performed in the operating room under general anesthesia with an ENT present.  

An ABR is required when doctors suspect that your child has sensorineural hearing loss.  The test is not invasive at all, but the process of being intubated and put under general anesthesia for a couple of hours is what takes us back to that long day in June 2011 when we handed him over to anesthesia for his open heart surgery.  The ABR will test how well sounds travel along Joey's hearing nerve pathways from his ears to his brainstem.  It will show the softest sounds his ears can detect at various pitches.  It will tell us whether or not he will need hearing aides. 

Compared to his heart surgery it's not really that big of a deal.  Today was like groundhog's day of a year ago before his heart surgery.  Much like before his heart surgery, Joey's thyroid levels peaked and they wanted us to get it re-tested today to make sure it's okay for him to go under anesthesia tomorrow.  

Joey was incredible.  We waited for 1 1/2 hours for the lab (they were short-staffed today) and we listened to the tears and cries of every baby and child who went before us to get their blood drawn.  While we waited for our turn at the stab, Joey smiled, waved and charmed the entire waiting room.  When it was our turn he sat on my lap while two nurses and Dad held his arm, he literally smiled-- BIG SMILED-- gave his full on double dimples to both nurses, never shed a tear and we were out in two minutes.  The entire waiting room looked at us and wanted to know what we had done back there.  Two words.  Super Joe.  

It was not the first time I was incredibly proud of this little boy wonder and it won't be the last, but it was just such an overwhelmingly positive experience that I was a little emotional with gratitude.  We sat there for an hour and a half and instead of being fussy or whiny, he smiled and waved and interacted with every single person in the room.  I don't know if it is his extra chromosome or if it is his awesome personality, but Joey tends to bring out the best in everyone he meets and today I just breathed it in and enjoyed every second of it.

By 2pm I had not heard anything so I started calling numbers on my list of pre-op preparation.  Super Joe has done it once again. His thyroid levels dropped and he is good to go for tomorrow's procedure.  I am trying to be prepared.  He will be out of our arms for 3-4 hours, which seems like too long to me.  The heart surgery was between 7-8 hours.  This time he is older, more aware and with every day my heart is more and more and more entwined with his, so I'm pretty sure it will be my heart breaking as we hand him over.  

So I prepare myself for what may happen.  Will he need hearing aides?  Maybe.  That's not the worst thing in the world.  I know that for sure.  As I read every night about Joey's little friend, Oliver, who is fighting AML (cancer) for 8 months in a hospital on the East Coast, I know in my heart that hearing aides, thyroid medicine and all the other little things in between are by far not the worst thing he could be facing.  Plus-- he rocked out in his super blue helmet with no problem.  He will be rocking out in his leg braces at some point with no problem.  He whizzed through heart surgery.  He is truly our Super Joe.  If hearing aides are what he needs, then hearing aides are what we will get him.  

This week has been a little bit of a rocky road for Joey.  We've had to discuss things like his thyroid, celiac disease (no word on that, yet), this ABR stuff and then we had another exam in which we were told by the second person that he most likely won't walk until he is between 3-4. Worst things ever?  No.  Plus-- no one really knows when Joey will walk.  For now we carry him and repeat our motto of, "We're enjoying carrying him now because someday we won't be able to and he won't want us to."  

So, if you think of it-- please send up a little prayer that Joey sails through his ABR tomorrow and that he does not need to get hearing aides.  Thank you in advance for your prayers! 

A Quick Thomas Henry Update

He has figured out we all have middle names.  He has taken to calling me "Jennifer Dawn".  I try to hide my laughter.  When I read his stories to him at night, if I make eye contact with him, he points at the book, yells at me and says, "Speak to it!"  It took me a few nights to figure out what he was talking about.  He means "read the story", but instead says, "Speak to it!"  He loves to bake cookies for his daddy.  

I dropped him off at pre-school the other day, where he had suddenly started getting into a bit of trouble (hitting, kicking-- you know the things that make all moms want to crawl back into bed for a week or two with a bottle of white wine) and I asked his teacher how he had been doing.  She said he was doing better and that he was so very "F-U-N-N-Y."  I appreciated her spelling it, because I know what she means.  He is so very, very funny right now.  It makes it very hard to discipline him, which is what I know he really needs.   

Oh- he is also just like his mama and has very sensitive eyes so he always needs his sunglasses.

In the meantime, he is becoming such a big boy with moving from his crib to a big boy bed and he has also stopped sucking his two fingers.  Oh, my, precious little man.

Yesterday he asked me if therapy hurt Joey.  I told him absolutely not.  It helps him.  He said, "Okay, mom."  

Bruce Springsteen Wrecking Ball CD Contest

Two concerts down and two to go.  With each concert there is a new song that becomes our battle cry and hymn.  Last night in Cleveland I walked away singing this one over and over.  Then I thought-- "Geez....it really isn't fair to keep talking about these awesome songs and not sharing them."  Thus-- a new contest!  All comments through the rest of April that are left on the blog will be eligible for a drawing for the new Bruce Springsteen CD: Wrecking Ball.  


Here is my follow-up battle hymn to "My City of Ruins".  This one is called "Rocky Ground".  Oh, how it speaks to my heart.  Our journey is not truly one of incredible struggle or pain.  It is more of a lot of little things that over time can become weary.  I hope you find these words as powerful and inspiration and uplifting as I do.  As soon as we can get through the ABR, etc., I am going to write a post on how to try to get front row tickets to Bruce Springsteen.  Did I mention I got to touch his hand last night???? 

Cleveland concert 2012.

ROCKY GROUND

(I'm a soldier!)

(I'm a soldier!)

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground

Rise up shepherd, rise up

Your flock has roamed far from the hills

The stars have faded, the sky is still

The angels are shouting "Glory hallelujah"

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground

Forty days and nights of rain have washed this land

Jesus said the money changers in this temple will not stand

Find your flock, get them to higher ground

The floodwater's rising, we're Canaan bound

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground

(I'm a soldier!)

Tend to your flock or they will stray

We'll be called for our service come judgment day

Before we cross that river wide

The blood on our hands will come back on us twice

(I'm a soldier!)

Rise up shepherd, rise up

Your flock has roamed far from the hills

Stars have faded, the sky is still

Sun's in the heavens and a new day's rising

You use your muscle and your mind and you pray your best

That your best is good enough, the Lord will do the rest

You raise your children and you teach them to walk straight and sure

You pray that hard times, hard times come no more

You try to sleep, you toss and turn, the bottom's dropping out

Where you once had faith now there's only doubt

You pray for guidance, only silence now meets your prayers

The morning breaks, you awake but no one's there

We've been traveling over rocky ground, rocky ground

There's a new day coming

We've been traveling over rocky ground, rocky ground

(I'm a soldier!)

We've been traveling over rocky ground, rocky ground

Oh, a new day's coming

We've been traveling over rocky ground, rocky ground

(I'm a soldier!)

We've been traveling over rocky ground, rocky ground

Oh, a new day's coming

We've been traveling over rocky ground, rocky ground

(I'm a soldier!)

We've been traveling over rocky ground, rocky ground

There's a new day coming

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground

We've been traveling over rocky ground, rocky ground