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.

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?!

Signing!

Here's a video of Cicily signing Maya, Mom, and Dad (her three favorite, most frequent signs). She is signing like crazy all the time now. Most of her signs are in three general regions, as you can see in the video. It's just like a baby first speaking though, they might say "ba, ba, and bu" for ball, balloon, and bubble, similarly with Cicily's signs they look similar but they are gaining variation and you just have to take the sign in context as you would with a word. She's distinctly signed Maya, Mom, Dad, bye, I love you, patty cake, Grandma (her sign for Grandma DeEtte is patty cake because she always plays it with her!), eat, sleep, home, book, please, thank you, and bird. That's all I can remember anyway. She really understands a lot more signs too, and I'm sure as her fine motor skills improve, her amount of signs will increase.
Enjoy the video! Please forgive Maya for the noises in the background - we had to take a video of her next so she could have some attention too.

18 month old portraits

Photography credits: Special thanks to Cicily's personal photographer Grandpa Courtney and also to talented Uncle Heath!!

Photo Album - 17 months

Coloring Easter Eggs

Easter Egg Hunt
Easter Morning

Beautiful girls, beautiful dresses, beautiful day!

Going down the slide
Being silly at the park
Cicily has been loving giving kisses to dolls lately
Move out feeding therapists - Isabel's on the job! If anyone can get Cicily eating, it'll have to be her food adoring cousin Isabel! She took her turn feeding Cis while they were playing at our house one afternoon.
Cicily LOVES her Grandma!!

Cis got to "eat" mashed potatoes (colored pink for April Fools day) tonight. She had potatoes all over the floor, tray, shirt, arms, face, hair, trach, and BAHA. And I'm pretty sure slim to none went in the mouth!

Hearing - What does Cicily hear?

I realized recently that we have confused a few people because we are teaching ASL to Cicily. So, I thought I'd clarify her hearing situation a little better. Essentially she hears near perfectly with her hearing aid on. Here are the details:
Cicily has no ear canal openings (except a tiny pin-point on one side- still unsure how beneficial that is or isn't). Since she doesn't have an opening to her internal ears she doesn't naturally have a way to conduct the sounds in her environment to her inner ears. This type of hearing loss is called a conductive loss. Basically she naturally hears about what you would hear if you plugged your ears. (In audiological terms, that's down to 45-60 decibels.)
Fortunately there are very cool hearing aids called bone conduction aids. Cicily wears her BAHA every day. (See her "equipment" section on the sidebar for details.) With her BAHA on, Cicily's hearing improves to normal levels. (That's she hears to 15 dbs, which is a whisper level. When the BAHA is implanted hearing improves to 0-5 dbs.)
Essentially Cicily hears very well with her BAHA. It's great sound quality, just more mechanical sounding than normal - it sort of sounds like you're hearing everything spoken through a microphone or on a cassette tape.
We decided to teach her sign language to give her a way to communicate until she can speak well. (Trach + cleft palate + small jaw = bad combo for early speech, but she'll get there)
Thanks to friends for asking me questions! If anyone ever wants to hear how Cicily hears, you're more than welcome to borrow her BAHA for a few minutes.