Going Bilateral

Cicily got her new BAHA last week!!! She's now the proud wearer of two hearing aids on her headband- one on each side. We've been working on getting this additional BAHA since last May, so we're very excited!
Theoretically this gives her a higher hearing threshold and some directional hearing. All I know is now she can hear me when I'm suctioning her trach and when I whisper to her at church. In fact, Cicily hears better than I do now! At her hearing test this past Tuesday she heard a very low tone that I didn't even hear. (So, good that Cis hears SO well, and kinda bad that I hear less than my girl with a hearing loss!) :)

Jaw Distraction Before & Afters

I realize it's a little late, but we now have pictures to compare Cicily's jaw from before her jaw distraction surgeries, to after her jaw distraction. I like to use her trach vent as a "yardstick". The difference is truly amazing! She has a much bigger jaw. She also has much more hair! One grew easily and naturally; and one grew with the incredible expertise of doctors, and care of Mom, Dad, Grandma, family and friends.
Before pics were taken July 2008
After pics were taken Jan 2009

2 year old portraits

Cicily's "don't tell me no" or "I'm not a fan of whatever you're doing" face

Happy/silly face

Thanks for more great pics Grandpa!

A little trach humor

I put the Passy-Muir valve (talking valve) on Cicily's trach today and as always, she started to babble and make tons of loud noises that we're not too used to hearing. Maya says to me, "Mom, you're going to have to turn that thing down for church tomorrow."

This makes me happy

It's Snow Fun!

Yesterday we traveled up to play in the snow. It was a 6 hour round-trip car ride for precisely 1 hour of snow fun! It was very worth it though, because Maya asked to go again soon when we got home and Cicily actually said, "more" whenever she got done sledding down a hill. A new verbal word! We've always suspected she'd be our little rollercoaster lover!

Maya wanted to build 2 snowmen - one for her and one for Cis so they could hold hands. So Chris built these beauties in likeness of our girls, and they're holding hands of course! It was quite a fun hour!! We're so glad we got to drive right out of the snow and back home though.

Words we never thought we'd hear

Cicily had her laryngoscopy yesterday.  She came out of anesthesia very well (we're attributing that to a new trick - the drug fentanyl).  I was surprised when I went to recovery to see her and she had a much larger sized trach in place.  I just thought, I guess her airway is still small and we'll have to try a distraction again sooner rather than later.  Surprisingly, I wasn't too horrified at the thought, just pretty calm.  Then Dr. Mancuso came and explained how surgery went.  The granuloma (scar tissue in her trachea) was growing on a curve and with the curve of her trachea he did not want to risk cutting it with a laser and cutting through the trachea.  So in January or February, after a round of antibiotics, he will do another excision of granuloma, but this time do it the old fashioned way with a scalpel.  He was apologetic that he couldn't get it done with the laser, but we didn't care at all because he then gave us some GREAT news.  

Her airway has improved remarkably.  Dr. Mancuso said it was a typical airway.  I was in complete shock!  I honestly always thought she'd have a small airway no matter how many distractions we did.  I pressed him on it further and he said an intubation would be no more difficult on Cicily than on any typical pediatric patient.  

I cried on and off all day long.  Happy tears of course!  My baby girl shouldn't have to struggle to breath anymore!  All the prayers and the hard work of her jaw distraction have worked in a most impressive way.  

After the granuloma excision surgery in Jan or Feb, Cis will have the decannulation study done to see if she can breath without her trach in all situations.  

Cis and Maya on a happy afternoon a couple weeks ago.