Wednesday, December 26, 2007
Cicily went for 30 minutes with her trach closed off and didn't turn blue once! Actually after her initial one second of switching breathing gears from her trach to her nose/mouth, she did great! She sat playing with one of her new Christmas toys babbling whenever she pleased like she'd been breathing from her nose/mouth instead of a tube since the day she was born! I had the pulse-ox machine hooked up and her oxygen saturation was mostly at 100% (normal level).
What does this mean??? Well, we're not exactly sure. It still means she could be decannulated (have her trach out) anywhere from the next few month to her 8 year old birthday. I know a couple children who have their trachs plugged all day long, but need them at night and won't be able to have a jaw distraction to grow their jaws and be decannulated until they're around 6-8 years old.
So, bottom line is Cicily could have her trach until she's 7, 8 or, older even. But, her jaw is growing!!!!!!
Friday, December 14, 2007
Tuesday, December 11, 2007
Before she was 3 years old Maya knew the basics of suctioning a trach and enjoyed teaching her cousins. She is currently Cicily's favorite person to receive oral/feeding therapy from and can actually tell you the directions to Cicily's weekly feeding therapy in Phoenix. (drive on the 202 past Arizona State University/Daddy, get off the 202, pass Hand City, drive down Thomas, to Cicily's therapy)
Perhaps the most super sisterly thing is the way Maya is starting to answer other children's questions about Cicily. At the park a young boy asked, "what's that on her neck?" Maya quickly came over and replied, "that's her trach because she can't breathe through her mouth." This past Sunday at church a young girl asked, "what happened to your baby?" Maya interrupted her Mom's typically clinical response with a proud, "that's Cicily, she's one year old now and is getting really big!" As a super big sister, Maya is already helping strangers see what a wonderful Baby Cis she has and that her most notable qualities are not her physical ones.
Wednesday, December 5, 2007
Cicily and Isabel trick or treating in style. They kept each other company while their siblings went to each house. They made for a great team actually - Cicily would chew on the packages of treats and then Isabel would eat the treats inside!
What a lucky girl!!! Cicily gets to snuggle and play with her wonderful Gramps!
We love this dress! (Thanks Epperson's who gave it to Maya!) Maya wore it all the time and I think Cicily looks adorable in it too. I'm thinking the bandanna is a great hearing aid accessory. (What do you think Mis- our BAHA accessory specialist??? :) )
The Fam with the Mickey Mouseter
This is one of Cicily's favorite pastimes. She loves to grab people's noses - whether it's her Grandpa in Disneyland or her Doctor in his office!
Monday, November 19, 2007
Cicily sitting on Mickey Mouse's couch at his house in Toontown
The family in line for the Buzz Lightyear (Toy Story) ride. Cicily with one of her classic friend-making smiles.
Monday, November 5, 2007
Enjoying some good AZ weather in front of our new garden
Birthday Presents from Grandparents- Toy from Gpa and Gma Watkins, Outfit courtesy of Gma and Gpa Snell. Thanks!
Aunt Whitney's wedding was this month. Here's Cicily with all her Snell cousins.
How Cicily spent the reception.
Woah Baby! Loving a Dum-Dum!
Tuesday, October 30, 2007
So this was totally unexpected! Maya and I were playing with a ball and we started throwing it at each other (of all things!) and Cicily started laughing histerically! It was so cute we of course kept playing the game for another 20 minutes or so. Chris and I decided there's two things we will do anything in the world to see - Cicily laughing and signing more.
Monday, October 22, 2007
Presents from Mom & Dad and Maya
Her very own bike to ride! She can actually reach the floor and ride this bike- I was shocked! Who rides a bike before they even crawl?!?
Cousins and Aunt Ondria eating at the birthday party
"Grown Ups" enjoying dinner.
Gma DeEtte, Gpa Courtney, Gma Sue, Nate, Janelle, Gpa Norm, and Aunt Kristine
Grandma Sue, DJ, Cis, Maya, Alexandria
Birthday Cake - not too sure about this cold stuff
Ok, it's fun to play with
A little help from Mom to want to put any in my mouth (typical with any food!)
hey, it's not so bad, I'm messy!
Wednesday, October 3, 2007
Nobody does a smile like Cicily!!! I love it!
Sunday, September 30, 2007
She's been doing this sign a few times a day since then. I think it actually means more of that specific game, as opposed to more in general- which is quite adorable really.
She's also been "babbling" with her hands a lot in the last few weeks. (That's something Deaf babies who are signed to will do, but I didn't know if we signed to Cicily enough to have her do that, apparently we do, or she's just that smart. :)) She'll look really deliberately at her hands and move them and her fingers pointedly.
It's very exciting to have Cicily be able to communicate some. She's always done a fabulous job communicating with her expressions, but this is an exciting milestone for us all.
Tuesday, September 18, 2007
We just scheduled Cicily's next surgery today. She will be having the screws placed for her BAHAs (Bone Anchored Hearing Aid) on Friday Novemer 16. This surgery will be done by Dr. Fucci - a neurotologist (surgeon who specializes in ears, hearing, and skull based surgeries). He will drill into her skull behind her ears and screw in 2 titanium screws on both sides of her head. The screws are each 3 mm long. One screw on each side will be used to wear her BAHA and the other screw on each side will be a "sleeper screw", just hanging out in her skull in case something happens to the working one.
It is an outpatient surgery, so no hospital stay- yay. Hopefully they won't have to shave off too much of her beautiful carefully grown hair to place the screws. (Moms worry about strange things, I know. When your daughter's having a surgery where the surgeon is drilling into her skull mm's away from her brain, should you really be concerned with her hair??? I don't know, but I am!)
After the 4 screws are in place (2 on each side of her head), they will osseointegrate (grow into her bone) for a full year. So next year, Dr. Fucci will do another surgery - stage 2- where he will make an incision on her scalp and attach an abutment to one screw on each side. The BAHA (same hearing aid she wears now on her soft head band) will then be placed on the abutment. And voila- she has functioning directional hearing.
If you want to look at the BAHA, and read more about it, here's the company's website:
Tuesday, September 11, 2007
While we were on vacation, I gave her a Red Vine to chew on. It's the first real taste she's ever had other than milk, or a tiny bit of something on my spoon. She really liked it and made a great mess!
Cicily's been working on eating through her mouth in earnest this past month. She goes to see a special speech therapist in Phoenix once a week who specializes in feeding. She also has an occupational therapist who comes to our house once a week to work on eating with Cicily. So far she takes little amounts of baby food a couple times a day. When I say "takes" I mean, she sits in her high chair while I make her smile so she opens her mouth, and then I shove the spoon in. And when I say "little amounts" I mean she swallows about 1/2 teaspoon a day, while the rest dribbles down her chin. But, slowly and surely she'll get better at eating by mouth, I'm sure.
Sunday, September 9, 2007
Cicily is becoming such a fun game player. She loves to play peek-a-boo! I love this video of her and her Daddy playing one night. (Sorry it's a tad bit dark.) A few days ago she was sitting in her highchair and she'd turn her head to one side and then look at me really quick and smile, then she'd turn it to the other side and look at me really quick and smile, and then the other side, and we kept playing like that for a couple minutes. She's a smart little gal- Sometimes I actually think she's much wiser than most of the adults in her life.
Another reason I love this video is because Cicily is wearing the Passy-Muir Valve on her trach that allows her to "talk" so we can hear her little voice. Love love that voice!
Monday, September 3, 2007
Cousin Aubrey, Mommy, Cicily, and Maya riding a train during our great vacation in Scottsdale
A cupfull of spoons - what a fabulous toy!! (Our "vacation house" in the background) Maya's been asking lately if Cis can sleep with her in her bed. So one afternoon, we put Cicily down by Maya for a picture and they both loved it.
Yet another sepia sleeper pic - but how precious is that!?!
Friday, August 17, 2007
:) Guilty! :)
It was a HOT afternoon, too hot to swim outside, so we swam in Mom and Dad's bathroom!
Love the sepia sleeper pics
Just enjoying a good book on her "therapy step"