Sunday, April 20, 2008

Simple procedure

Neither Mo nor I want to verbalize it, for fear of hexes, but this could be a huge week for Hope. We got the long-awaited call late last week: The surgery for ear tubes is Friday, followed by a BAER test to determine if they did the trick.

If they do, my oh my, she can hear.

Supposedly, it's a routine, short outpatient operation. She goes in early Friday, is sedated so her head remains perfectly still, undergoes a 15-30 minute procedure to implant the tubes, has the hearing test and should go home that afternoon.

Our pediatric ear-nose-and-throat specialist, Dr. Frosty, has a good track record. This is his bread-and-butter. He's only failed to implant one patient and he got them in on the second try a few months later. But No. 2 is inevitable at some point, and he cautions that Hope's ear canals are tiny.

Like a lot with Hope, we don't want to get ahead of ourselves. We need to temper our nerves, excitement and wide-eyed eagerness with sober realism. There's a chance it won't work, so we'll have to proceed to hearing aids, wait until Hope gets bigger and try again. There's a chance it will work, the tubes might not make a difference and she'll need the aids anyway.

Either way, the odds of improving Hope's hearing are good. She has conductive hearing loss, which means the inner workings of the ear are fine but there's a blockage that prevents sound from reaching them. The tiny canals may be the culprit, but so could wax buildup, fluid or a missing bone.

We're convinced that Hope's hearing has slowly improved since the first BAER test, which revealed she could detect sounds at high pitches or extreme volumes. She startles sometimes. Every once in a while, we'll call her name and she'll turn to us. Then again, one of our smoke detectors is perilously close to our oven. It squawks nearly nightly. Hope doesn't seem to mind.

So we've proceeded as though hearing is an inevitability. We read to her. We sing her songs. We babble about our day and carry on conversations that she likely can't hear. But she sees us moving our lips and pays rapt attention. Hopefully, when those wagging lips begin to produce sounds she can comprehend, she'll put it together and life will be good.

But you never know. Dr. Frosty assures us that kids are resilient and "do fine" after successful surgeries. Still, we wonder about the adjustment. All of a sudden, if things work the way we want, Hope's world will expand exponentially. In addition to sights, smells, touch and taste, she'll have this whole sensation to figure out. Will it be melodious or cacophony? Will it expand her burgeoning sense of wonder or simply overwhelm? Will "Running Away from Mom" sound nearly as cool if she can hear my singing?

Nor are tubes a cure-all. Sometimes, I've deluded myself into believing that our path will suddenly become easier once tubes are implanted. The skies will open. God will rain M&Ms from the sky and remove the brown ones. And I will suddenly have a full head of hair. Big Mo brings me back to Earth, pointing out that hearing is just one part of the puzzle toward communication, which is always a challenge with Cornelia de Lange kids.

Still, we're excited. The benefits are hundreds of times better than any niggling concerns and it's such a relief to finally be doing something after what seemed like months of limbo. So we do what's beginning to come naturally: Take whatever comes as a gift and roll with it.


Aunt Molly said...

Love the video and picture! Wow...she is absolutely precious with Grandma K! Great news to hear the procedure is scheduled! Miss and love you all..xoxo

Jason said...

Hey Mo and Joel,

Just wanted to tell you guys that we read the blogs regularly and are happy as all get out to see hope is doing well. I told your mom mo, that we read the blogs and are very thankful for the updates. Your family always treated me like a son, a brother, a friend. I wish you all the best in the future.

Karen said...

I hope everything goes smoothly with the procedure, and I hope the BAER test gives encouraging results. We'll be praying for you guys!

Lisa said...

We'll be thinking of you guys during the procedure and keep our fingers crossed. Doesn't matter if it's only 15 to 30's still nervewracking.
That latest picture of Hope is SOO cute! She looks so grown up. : )

By the way, every time I read your blog when Liz is with me, she always says: "Baby Hope is so cute."

Lisa, Brian and Liz

Jan said...

Lots of prayers and good thoughts coming your way for the procedure! So glad Grandma K can be there now.

Heidi @ GGIP said...

Much luck with the surgery. I can understand hoping that it will be successful and make things hunky dory, but then again, you do have to balance that with all the what ifs....

Misty said...

i will have hope in my thoughts all friday!! good luck little hope!!! i am so happy thinking that she'll be able to hear her mom and dad soon!! i pray that everything goes well and they get it on the first try!!

Anonymous said...

good luck buddy! i will be thinking about you on friday. can't wait to play again!



Sonia said...

Best of luck tomorrow... you'll be in our thoughts and prayers.