Thursday, August 13, 2009

The BIG Activation Day!

The realization has set in that this is really happening. Our little girl has entered into the CI world. How exciting is that!!

My sister, Anne, my brother in law and my niece joined us on this special day. It might help to know that, the Glenrose Rehabilitation Hospital is not a hop, jump, skip away from our home. We are a good 4 hour drive north of there so when my family comes for support, we appreciate it enormously as they took minutes, hours and days out of their schedules to spend it with us. Thank-you.

August 11th will always remain a special day in our lives. Before she was "turned on", our audiologist checked everything and all 22 electrodes are firing on both sides. This is great news as usually there are always some electrodes loss. Sienna cooperated very well, in part because her older sister, Rylee, was playing very nicely with her but also because I had marshmallows for her.

I, nor our audiologist, could not have predicted a better reaction. When the sound first came on, she made a big frown, looked around and put out her arms as if she was saying, "What in the world was that?" Our audiologist turned it off for a minute, we signed "all done". When she turned it back on, Sienna again had the big frown and now she signed "all done". We nodded our heads and said, "Not all done, Sienna, this is just the beginning." She then turned and hugged me, the sound was now scaring her. Our audiologist set the sound conservatively and has given us 4 programs, each one giving her a little more sound. By next Friday, when I need to return to the Glenrose, we should have worked our way up to program 4 slowly, depending of course, on Sienna's reactions. We need to make this a positive experience for her, the last thing we want to do is scare her.

As we walked out of the hospital, we could not help but feel sad. Saddened at the thought that for the rest of her life, she will need this equipment. First thing every morning, she will need to gear herself up to be able to hear the world around her, and the last thing she does before bed is take the gear off. This is a forever thing. When she first got her hearing aids, we needed time to adjust at the fact that she's always going to be different from the rest of the children. Again with the CI's, we seem to be going through those same feelings. A feeling that is hard to describe. A feeling my husband and I both felt. For a moment, when Sienna's CI's were first hooked up, she seemed as though she did not belong to us. "Who is she, really?" This feeling did not last long, we decided to come home that same day. We needed that alone time with her to remind us of who those little eyes belong too. They belong to our little girl who came into our world on August 28th, 07. Our little girl who is comical like her father and persistent like her mother. Our little girl who we will love unconditionally.

The next day, we spent time, fiddling around with her Ci's, helping them stay on her ears better. Her ear molds definitely work better. I remember a mother had sewn pouches on the back of her child's shirt. I'm going to try sewing a pouch on a few undershirts to see maybe if that'll work. I just find the babyworn clips so bulky. This is a learning experience for us, we will take each day as it comes. As soon as I have more time, I will post a video and pictures.

Thank-you to the CI moms out there who have been there for us. We will always need you.

Thank-you for the miracle of technology that is allowing our little girl to hear.

4 comments:

  1. Happy hearing birthday, Sienna! I can only imagine the emotional adjustment while going through the CI process. Every time Nolan loses a little hearing, we go through the grief process all over again (even though he's still a long way from CI territory).

    DuoCal is pretty neat stuff- we get it from Nutricia. It's a powder that you add to food and drink- it adds fat and calories to everything. We add it to Mac N Cheese, yogurt, milk, juice, applesauce, etc. We bought our latest batch online, though we're trying to squirrel away a stash from our GI doc's free sample closet (g)!

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  2. Wow! So excited for you! Now the fun really begins! It makes me sad too, that Lucas has to wear all of this gear for always. But, soon it will be all worth it! And once you figure out what works best for keeping the CIs on, I think it will seem like less of a burden. Lucas is only 19 months, and we are going total BTE and loving it. I use lots of wig tape, and we're good to go!

    Here's wishing you lots of listening fun in the coming weeks! Cochlear implants are amazing!! BTW... I just found you on FB!

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  3. We are so happy that all went good at the Glenrose!

    Daryl, Teresa, Lauren, Allison and Troy.

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  4. Everytime I read a post like this it takes me back and I well up with tears. I just want to reach out and hug you! Oh how I know this oxymoron of "excited sadness" so to speak! I know there is such an exciting journey ahead and I am amazed at this awesome technology allowing our kids to hear but in the same breath, I am scared of what's to come as Aiden gets older with all this "gear" on his head. I have to say though that this feeling comes and goes more infrequently now as the gains we've seen with Aiden way outweigh our fears. One day at a time ... and just wait, now the fun truly begins! Happy hearing birthday Sienna!!! I can't wait to hear more!

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