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Tuesday, June 24, 2014

Katie HEARING for the first time--- video!

Katie is HEARING clearly for the first time in her life, at age 4 1/2, here's the video. I said her name and she looked right in my eyes (we rarely get eye contact). I sang and she heard me. She cried a bit, because as you can imagine, experiencing a new sense is sensory overload and pretty overwhelming (it's like us experiencing an overwhelming, bright strobe light in our eyes for the first time). She actually turned it from "1" volume to "0" (off) at about 2:00 when she touched it, so she didn't even hear the cover of a cover of Allison Krauss singing Baby Mine at the end of the video, lol... we had her listen to the real one later... will upload another video later when she's laughing at the feedback sound! The BAHA (hearing device), which is conducting sound via bone, works on a soft headband by transforming sound into a strong vibration on her skull, then conducting it through her skull to the tiny bones in her functioning inner ear, bypassing the absent ear canal. Make sense? She's only wearing one and will eventually wear two, this is a loaner.  We are so excited for how this will transform the way Katie engages with her environment and starts to interact with us more!

A big day for Katie Grace! Now with her hearing device on, she mimics when I sing a note! :) So darling!

I know it's KATIE who got access to one of her senses today, but I'm also just so overwhelmed--in a good way. It's so strange for me to process as her mama, she can HEAR us. It's so hard to wrap my brain around. She went to take her sister's juice and I said, "no, no, no" from across the room, without a visual cue and she turned around immediately, looking for where the sound was coming from. Later I said, "Mama, mama!" to her (from 3 feet away) and she said, "Mama!" back to me. I sang "You Are My Sunshine" to her and I got THIRTY seconds of amazing eye contact. That's just unheard of for Kate. (Pun intended). I haven't happy-cried this much since Gotcha Day. Sound is breaking open Katie's shell, and helping her want to engage with us. Thank you, Jesus!

Will update more sometime when I get a chance! :)

Saturday, June 7, 2014

She HEARS! and other exciting news!

She HEARS! and other exciting news!

First, a brief letter to our blog readers: 
If you are reading this, you are most likely more than just curious or bored, but are a Katie-fan, one of her cheerleaders, who want to see her succeed in life. For that, I really cannot thank you enough. We are wild about our Kate. But we are so touched that so many others are, as well. Thank you for caring about her and embracing her in your hearts, and wishing her well, and praying for her. When I see some of you at the park, I literally see a LOVE for Katie in your eyes, when you look at her (Thinking of you, Helene, Dondrea, Rachel, Tara, Cristin, Christina... too many of you to mention). Do you know how that makes a mama feel? In an often cold and disappointing world, it is truly a blessing to be loved and embraced by your community (locally and globally). 
Love, Me
So for those of you who only read my blog, and aren't my Facebook contacts, I apologize because I've kept you in the dark for a few weeks. A couple hours after my last blog post, on Memorial Day, THIS STORY happened:
She HEARS! And just like, that, as clear as a bell, like many other confirmations we've had that she can hear a tiny bit (re-acting to the vacuum, loud music, and alarms without visual cues and singing tunes back to me that I had loudly sung in her tiny ears) Katie impresses all of us AGAIN! She was leaning back in her chair dangerously, and I went up to her and said loudly in her ear, "No, no, no, Katie." Mom, Doug and I did a double take as she sat up defiantly, tilted her chair back again and as clear as a bell chanted in her own voice, "NO, NO, NO", "NO, NO, NO", "NO, NO, NO!" with a huge grin on her face... I've never been so excited to hear a child say "No" to me!!!! This means, most likely, that she is in the estimated 85% camp of children with her condition of Bilateral Microtia and Atresia. She most likely has intact inner ears and has only conductive hearing loss because of the cartilage and tissue blocking sound from travelling to her inner ear, instead of sensorineural hearing loss (non-functioning or damaged inner ear). This is fabulous news, once confirmed by a doctor soon, because it means BAHAs (Bone Anchored Hearing Aids) are all she may need to hear, instead of the much more costly and complicated cochlear implants. (That's my quick explanation). I love her the same either way but I'm thrilled for what this means for her! 
AHH!!! We were so excited! 

We started singing to her, loudly in her ear, at night more and more, too. She is starting to focus on my signing as well. The other night, I gave Katie her nightly baby massage and sang her 3 usual songs in her ear. She always smiles and laughs, but at "Jesus Paid it All", she pulled my hands around her shoulders, in front of her face, and waited, motioning for me to sign the song for her. She loves the signs for "Sin had left a crimson stain, He washed it white as snow." The "snow" ASL sign delights her.

When we sing, she listens carefully and often sings the tune back to us. Doug even started singing to her too! Doug had never sung to Katie before and I encouraged him to. After Cara had gone to bed, he sang "Jesus Loves You" in Katie's left ear and at each chorus, I sang simultaneously in her right ear. It was her first "surround-sound" experience.  She was in heaven, she grabbed Daddy by his face and drew him in to sing again, and pulled me close too. There's nothing quite like the experience of her wrapping her little arm around you and "singing" along to the tune. I delighted in sharing that experience with Doug. It's seriously moments like these in our marriage that take our breath away. Our time with Katie and Cara in the evening, bonding with them is really the highlight of our day. 

Here she is focusing on our singing, and drawing us closer!

She just loves her nightly surround sound duet!

And now for a VERY exciting announcement!!! 

Due to the generosity of a new friend, Sonja, who also has a sweet son adopted from China with the same condition as Katie, we get to borrow a BAHA (the expensive hearing device she needs) starting NEXT WEEK, until she gets one of her own in a few months. 
We are not positive yet if our insurance will cover Katie's BAHAs or not, so we may need to do another mini-fundraiser, to cover part of it. (Nothing at all compared to the adoption process fees!)
The thought that my baby is about to be able to hear me way more clearly, and start more social engagement, in a matter of days from now, makes me cry! I just can't believe it's so close!!!! Be watching for a video in about a week, folks!!!! 

It may not look like much to anyone else, but for this family, it's a miracle. Katie is actually staying on the bed for reading time and letting me sign a book to both of them. AND she's paying attention. Triple miracle.

Tonight she pulled her lounging chair to the best patch of setting sun in the living room and is cuddling with her beloved blocks-- (I love her quirkiness!)... (and yes, she's in just her diaper, after an unfortunate pudding disaster!)  ;)

Next week is also Katie's educational meeting and we are anxious to get the ball rolling with finding all the best resources for her. I still have ALOT of phone time to continue to figure out if her medical and special hearing tests in July will be covered with our insurance. Please pray for me as I continue to navigate the murky and perilous waters of our insurance policy! I'm determined, but often spend an hour a day on the phone, setting up appointments and inquiring about coverage for tests, etc. 

We are thankful to the Lord for all the WONDERFUL things He is doing in Katie's life! She is blossoming more and more and more! 

Thank you again, from the bottom of this mama's heart,  for cheering for her! 

Wednesday, June 4, 2014

A Look Back! One Month since Gotcha! Video!

A CELEBRATION of our one month so far with our sweet baby!!! :)
How we adore her!!!

A LOOK BACK! I've been working on a celebration video of our Katie, and singing the second song in the video all month-- I've been saving it up for this! Today is ONE MONTH since we met our baby girl, and she changed our lives forever! Oh, Katie Grace, how our hearts BURST with love for you! You are going to be a world-changer! 

I have SOOO much more to share, but it's bedtime! I will soon! :) We are doing GREAT! xoxo