Wednesday, November 19, 2008

So we Hear, He is "The Man"

When I was a child my dad would chase us kids around, as we laughed hysterically, doing all we could for him not to catch us, for when he did, he'd tickle us until we answered his question, "Who's the Man? Who's the Man?" and inevetibly, we'd scream out in pure laughter, "YOU ARE DAD! YOU ARE!"

He continued this with his grandkids, who absolutely L-O-V-E-D this game. In fact, my oldest son Ryan, wrote on the card for the flowers at his grandpa's funeral ... "Dear Grandpa, You will always be "The Man". I Love you." Your Partner, Ryan.

Move over dad ... because after the last couple of weeks in Maryland ... I keep hearing about "The Man" who just so happens to be the doctor & surgeon on Aiden's new CI team.

Every appointment we go to, people comment about how we are in such great hands at Johns Hopkins. How great of a team we will have and how we've come to the right place. They comment how the whole cochlear implant team is just phenomenal. Then they ask, "Who is your surgeon?" When we tell whom ever it may be asking, every response is very similar ... "Well not only are you in good hands, but you have "THE MAN!"

We met with "THE MAN" this past Monday. I'm lucky to say he is part of our team. He told me what every mom of a deaf/hoh baby constantly wonders, constantly questions, day in and day out,

"What caused my baby's hearing loss? Why is MY baby deaf?"

He told me, after looking at my baby's MRI, why our binky boy has a hearing loss. He told me the answer I've been searching for, all within 10 minutes of meeting him. He is "The Man". And although now I have more questions and even more to look into, at least I am now aware of why my baby boy cannot hear.

Aiden has Enlarged Vestibular Aqueduct Syndrome OR EVAS/LVAS. Go here to read more about it.

We're still looking into what all this means and I will blog more about it later. We still have a lot of questions. What we do know though is that our goals for Aiden are still the same. He will still greatly benefit from a cochlear implant and we will continue to work our butts off to make sure he is successful, before and after implantation.

And although we are SO excited to have "The Man" as Aiden's surgeon, we know and will never forget, who is truely "THE MAN" ... my daddy a.k.a. Grandpa Bob.


leahlefler said...

Oh, to have a cause! This can make decisions so much easier, especially when you know there is a probable progressive component to the hearing loss. Did Aiden's first ENT see the EVAS on the MRI?

How wonderful that you have "the Man" and can move forward knowing your little guy is in the best hands.

Karen Putz said...

Ah, now you have another piece of information to work with! We suspected LVAS/EVAS in our family because so many of us kept losing hearing after hitting their heads but it turned out to be a rare gene.

Wishing you a smooth journey with the implant. :)

Rachel @ Cochlear Implant Online said...

Hi there,

I know a few young adult CI users who have LVAS/EVA, and they're doing very well with their CIs.

This is a blog of a 23 year old CI user who recently graduated from Clemson University -

This is a story on my website about a CI user who is an audiologist -

If you'd like to get in touch with either of them, I'd be happy to give you their contact info.

tammy said...

Leah - Our first ENT did not see it, this is the first we've heard anything about it. *smile*

Karen - They're saying that this is caused by a recessive gene, which I didn't realize this was genetic. Thanks for the well wishes! : )

Rachel, I'd love their contact info. Can you email me at aidensmom0317 at THANKS FOR SHARING!

leahlefler said...

Very interesting that his first ENT didn't see it! We've had an upward fluctuation in one ear (other ear is currently deaf- temporarily, we hope). So go figure! Nolan's now registering in the mild range for the high frequencies in one ear. I feel like the sound booth is totally random these days!

Julie said...

Knowledge is a GOOD THING! And, as others say too, it's great to know you're in good hands :0)

Mom to Toes said...

I guess this answers my question in the last comment I left.

I am so glad you have an answer! I think that was one of the hardest parts for me in the beginning... not knowing.

AJ's Mom said...

I was just about to ask how the appointment went...but then I had thought you had posted about it. So when are they thinking of implanting Aiden? Where is he in process?