CI Activation

Thursday, July 2, 2009

So, our story is not different...just personal

Over the past year, I have become somewhat obsessed with reading the blogs written by parents of children with hearing challenges (I cannot say hearing loss because children with Thomas' diagnosis have losses and then gains -- hence my selection of the word "challenges"). I have laughed, cried, raised my fists in the air and felt the strong pangs in my heart of mourning, angst and anger, all after reading your posts. Your stories have inspired me, made me feel anger deep within my bones, and brought me to my knees in prayer...thank you for giving me the strength to face the challenges before our family. Your stories have impacted so many, and I thank you for your gift.

The past year has not been so different for our family than the hundreds of families out there in the world that face the challenges of hearing loss...hence the title of this blog.

Our son, Thomas, is 21 months old and was diagnosed with bilateral enlarged vestibular aqueduct syndrome at 5 months of age. He was born with a severe to profound hearing loss in his right ear and normal hearing in his left ear. My husband and I knew in our heart of hearts that we needed to know whether or not Thomas would lose hearing in his left ear. We were challenged by 2 different ENTs before we finally found Thomas' ENT, and ultimately his surgeon for his CI, which Thomas received two weeks ago...Thank God for Dr. B!!!! If you have ever walked into a doctor's office, met the doctor and said to yourself, "okay, this is the doctor that we can trust to take excellent care of our child." That is what Dr. B is to us...

Well rewind to before his CI... Thomas' hearing fluctuated during his first year and a half of life. Following a fall in the driveway at about 17 months, he became profound to no response in the right ear and moderately severe (lower frequencies) to mild (higher frequencies) and we lost almost 6 months of audio verbal therapy development in expressive language. To say that we were devastated does not really describe our feelings...remember when your family first discovered that your child was hearing challenged?...this was our feeling once more...just almost a year after diagnosis. The warm tears of sorrow were again felt on our flushed cheeks.

We also felt the need to press for a cochlear implant -- even though Thomas didn't fit the "text book" need for a CI. I will go off on somewhat of a tangent here because I will tell you right now...if you think that your child would benefit from a CI, then your gut is the best tool that the Lord has given you. We didn't have to fight because Thomas' team of experts believed that a CI was right for him...but, if your is not as lucky as ours was, fight, fight, fight for what you believe is best for your child. You are your child's best advocate...it is your job to do what you think is right!!!

I will sing the praises of Thomas' team of experts, his audio verbal therapist and audiologist, in coming blogs (because they truly deserve their own post)...just know that these two individuals are amazing people...they truly love Thomas and want what is best for him. Thomas would not be where he is today without these two professionals...who also show love for Thomas while also being empathetic and his advocate every single day. To rave about these individuals does not do them justice...they are truly Thomas' angels here on earth.

So I guess, this is where I'll begin our ongoing posts, hopefully not diatribes, of our challenges...we are not different from you...we're just taking this opportunity to make hearing challenges...personal.

Your child is as amazing as ours...love their tantrums, quirks and little sounds they make...they make them who they are...yours...and make your story...somewhat different!


4 comments:

  1. Hi there! I saw your blog on Tammy's FB page! Love it! Looking forward to reading about Thomas's adventures. I bet you're counting down the days to activation! Yay!

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  2. Love this, love him, and love you! I'm so excited you are going to share your voice and your story! You have so much to offer parents Kat and what a beautiful beginning! Thomas is such the cutie and is so lucky to have you for his mommy! Hugs!

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  3. Finally got to read this and it gave me goose bumps! You are such a great mom and I am so excited for others to get to hear your strength and courage. We all need each other. I agree with Tammy- Thomas is lucky to have you as his mommy!

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  4. Love the blog, we used to use Sarah who ran off to TX a few years ago, she's great, do you know her, she's an AVT.

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