Sunday, May 25, 2008

Jaw Distraction surgery scheduled

Cicily will have her first jaw distraction surgery on Tuesday July 1. Her craniofacial plastic surgeon Dr. S will surgically brake her mandible and then place screws into the bone. For more details on the surgery, look at the previous post on jaw distraction on this blog.
We're planning on an overnight stay at the hospital and then back home the next day. We begin turning screws 4 days after the device is placed. The device Dr. S decided would work best for Cicily right now is actually an internal jaw distraction device. This means only a flexible one inch metal piece will stick out of her skin just below her ears. I just looked for pictures online of this type of distraction device, but didn't find any. I did see this blog on the first page of my search results though, so hopefully the pictures we'll be posting in the next few months will help someone else!

Thursday, May 15, 2008

Photo Album - 18 months

Girls' toenail painting party. Cicily and Maya even dressed up for this one!
Reading books together before nap time. Maya sometimes likes to "read" the books that she's memorized to Cicily and Cis, of course, loves it.
Cicily loves books! I clean these books up at least once a day and so far I love it!!
Cis walking with a walker! Our good friends let us borrow this cute little walker so Cicily can practice walking around. Shel likes being up on her feet. We're really focussing on just having her crawl a ton though because it's been SO good to strengthen her arm and back muscles and improve her balance.

Thursday, May 8, 2008

Mobility!! - She's a crawler!

Cicily's been crawling now for about 3 weeks. It has changed her little life. She's so much happier being mobile (not that she wasn't happy before, the girl almost always exudes happiness). It's great to have her crawl around and investigate things. Her favorite spots are our bookshelf (just like the rest of the fam!), Maya's nightlight, the magazine stack, and the phone in Mom and Dad's room. I know lots of moms think I'm crazy, but I'm honestly loving cleaning up her little messes! It's a feeling I'll try to keep in mind in the months and years ahead.

Special thanks to her physical therapist Jill for helping us get Cicily mobile!

We've also started going to a gymnastics gym with another wonderful physical therapist Jenn. Maya and Cicily both LOVE the gym! Jenn and all the fun gym equipment have been a big boost to Cicily's gross motor skills. Thanks Jenn!

Additional note: Treacher Collins Syndrome does not affect gross motor development. (Although I've talked to other parents with kids with TCS who say it's been an issue for them as well.) We haven't figured out a great explanation for why Cis is delayed in this area other than she had 2 surgeries and 2 bouts of pneumonia by the age of 6 months and was sleeping 20 hours a day on her back without moving much. Anyway, the fact that it's not usually a part of TCS has made it more difficult to deal with some days, but we're glad she's making progress and who cares after all if she grows up and can play soccer if she wants to?!