Tuesday, May 15, 2012

activation.

Just as a disclaimer, I've shared about 2 bottles of wine with one of my besties--take this post for what it's worth, but know that it's from the heart.

Today we went bilateral.
Going for number 2!

Love this boy.

One of our fabulous Hopkins audis explaining to Christian what's going to happen....things really were easier when he was a baby!


Internally everything is working FABULOUS! 

Christian listening for his "beeps" while playing with his new SpongeBob DS game.  "Heard that one, Mom".


Two ears are better than one.


Cool soccer ball cover. Daddy says he's going to order a Redskins cover for him!

Our second Cochlear Koala. Christian named this one "CI-er, but Mom his nickname is Sharker". So thankful to have such a great team at THE BEST implant center!


Ready to go home and see his buds.


Dinner and cupcakes with our best friends. 

Newest Cupcake Kick: Whole Foods makes pretty darn good ones!

Christian and his best bud Justy.



Going into Baltimore today I had no expectations. Much like last time around, I just wanted my boy to hear.

I can't describe what I'm feeling right now other than it's a mixture of a little bit of excitement, a heck of a lot of anxiety and an immense amount of hope. Christian's activation today wasn't one of those viral YouTube videos that show the miracle of the Cochlear Implant. It wasn't one of those activations that bring tears to your eyes or demonstrate what we know is truly the magic of this amazing device. No, today's activation was different. Or maybe I should say it's "real".

The reality is that Christian has been hearing out of one ear for almost 4 years via his first CI incredibly. He's now 5.5 years old, is amazingly articulate, and speaks his mind. Today he described to us in great detail just how HARD it was to hear out of his new ear. Today he showed us with his squinty eyes and his determined face how HARD he was working to listen. The reality is that when it comes to his new ear---his left side, we are literally starting from square one. He told us he heard the "beeps", but when it came time to comprehend our voices, he really really struggled.

We know this is normal.

We should've expected it.

For the next week, Christian will wear both of his CIs during all of his awake hours. His new ear was programmed very conservatively. Come this time next week, the real work begins. Targeted listening time will be implemented at school, pull out speech therapy begins, and my life with my amazing boy will be devoted into rehabing his new ear. We will work on it day by day, starting with the basics and moving forward as we can.

We're going to rewind back to our days in 2008 when I would push him in a stroller and narrate the sounds of our neighborhood. This time, we'll ride bikes and take breaks and check out what's going on in our town. We're going to seek out language and listening opportunities EVERYWHERE we go. We're going to narrate our life. Once again, we are in the thick of it.

As much as I wish I could snap my fingers and voila--my baby would be able to hear just as well out of his new ear as his old, it doesn't work this way. Right now, his brain is working hard trying to interpret the sounds coming out of the implant. Right now, he can't understand our voices, music or environmental sounds.  Right now, he's in a really difficult spot.  I am so incredibly thankful that we go to the best implant center in the nation. I am beyond thankful that Christian is a part of one of our country's best oral-deaf education schools. We just need to follow his lead, give him the tools and wait and see. I know he can do it. He's never ceased to amaze me.

Oh, and our Lily....when I picked her up from her bff Julia's house (her Momma is one of mine too...funny how that works out!), she exclaimed "Brother, I'm proud of you". She is, and has always been, our shining light of joy and laughter and always gives us the bright side exactly when we need it. We literally just found out we were expecting her when Christian was activated with his first CI, and now  3.5 years later, she's proving to once again be such a gift to our family.

Perseverance. Patience. Prayers. It's what we need right now.




2 comments:

Miss Kat's Parents said...

At least he didn't cry! Miss Kat was so upset by the new input from her second side that she ripped it off her head in the audiologist's office and said "You said I would be able to hear! This is just beep beep beep!" It took us almost an hour to convince her to put it back on.

Here is a link to our story, maybe it will help!

http://www.misskatsmom.blogspot.com/2010/08/activation-2.html
http://www.misskatsmom.blogspot.com/2010/08/next-few-days.html

It only took a few weeks before Miss Kat could understand speech with her new implant alone and within 12 months she was scoring equal. Christian will get there too!

Jodi Michelle Cutler said...

Um, I think I've been a little behind in my posts:-)...love you!!!