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.

Mepilex AG - great product, amazing company!

I've talked about all the nice people we've been fortunate to meet since Cicily was born, and now I have to share the wonderfully nice companies we've been fortunate to link up with.

We just recieved a generous supply of Mepilex AG samples from the Molnlycke Health Care company. The VP of marketing for the company found the blog post about how well Mepilex has worked for Cicily's g-tube site and he contacted me. I was in tears when I read his message, being so in awe and grateful that people care so much about my Cicily. Now I don't have to worry about the insurance company telling us one day that she's had enough Mepilex and they won't cover it anymore!

We also want to say thank you to Southwest Airlines. They have a voucher program for medical needs. I applied for tickets to fly to San Francisco to meet with the ear doctors and they gave us vouchers for Cicily's ticket and part of mine. I (definitely) fly SWA!!

As I've mentioned before, Cranial Technologies provided Cicily's helmet that she wore post- jaw distraction.

It's a wonder for me to be Cicily's Mom and see so many people take an interest in her well-being and be touched by her lively spirit.

Next surgery

Rescheduled again for Mon. Dec. 8th. This time due to hospital PICU space. (third time's the charm I hope!)

Rescheduled for Mon. Dec. 1st.

Nevermind - This surgery did not happen today. Insurance issues are mostly to blame. Hopefully we can reschedule it for next Mon???

Cicily will go in for surgery on November 17th to remove a granuloma that has grown in her trachea. A granuloma is a little ball of scar tissue. In this case, it's caused by the trach irritating the tissue around it and Dr. Mancuso will simply cut and cauterize it right off. He said it's quite straight forward. Dr. Mancuso will also perform another laryngoscopy and then we'll proceed one of 3 ways:
1. Cicily's airway will appear adequate and she will have her trach capped in the PICU overnight to see how she tolerates breathing without a trach in all different circumstances.
2 . Cicily's airway will still appear too small from the laryngoscopy and her trach will still be necessary and we'll come home.
3. Cicily's tonsils will be removed to create a larger airway (and get them out of the way so they cannot cause future trouble) and he'll see that her airway is adequate enough to cap her trach for a decannulation trial at a later date when she's recovered from her tonsilectomy (I'm assuming January).
We're hoping for scenario #3, eventhough it means she'd still have her trach until January at the soonest and till she's much older at the latest. I'm nervous about Cicily transitioning from a trach to no trach during the sick winter months anyway. I will update on the 17th or 19th!