Cicily's new trick - exciting news!

This morning we tried out a rather unorthodox experiment. I've recently been putting my finger over Cicily's trach and she breathes quite well until she turns her head or swats my hand away, so my sister Ondria thought up a great idea to put tape over her trach vent to see how she does. So, this morning I was feeling adventurous and tried it out.
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!!!!!!

What's that you said? -No??? Ahahahaha

For the most part, we do not tell our girls "no" very often. Mostly because it's more fun to say yes and we don't want "no" to be yelled back at us. The only time we really tell Cicily "no" is in a life-injuring (or hearing aid injuring) moment. Since she has lots of extra toys attached to her person, she likes to pull on them when all other real toys are out of reach. This includes pulling on her trach vent, g-tube button, oxygen mask, and hearing aid. Pulling on her vent is not too big an issue normally, but it has been the cause of her pulling out her own trach on a couple occasions. And putting in a trach is never fun, especially not under unplanned circumstances. She also for some crazy reason loves to tug on her g-tube button. This occasionally causes it to bleed a little. Apparently it doesn't hurt her or she has a hugely high pain tolerance, I'd probably vote for the latter. Once on the way to the Pediatrician, I looked back at her in the car and she smiled her huge smile at me as she chewed on her button - she'd pulled it clear out and was chewing on it and thought it was funny! I had to laugh, and find a place to pull over and insert it back into her stomach. (see G-tube under my equipment for how that's done) There's also her oxygen mask that she wears while sleeping. The other night we heard a strange banging sound, so Chris and I rushed to Cicily's room and she smiles up at us while banging her mask against her crib. And then there's her hearing aid which she loves to hit with her hand and pull down over her face. None of these playful activities is a very good idea. So whenever Cis engages in playing with these things, we tell her "no, that's not a toy" and sign no. She looks at us and smiles all big, then gets a smirky grin and slowly goes for the "toy" again. I think for Cicily life must be one big, sometimes crappy, mostly fun game.

My Super Sister

Since their first meeting 2 weeks after Cicily was born, Maya has been an astonishingly great big sister to Cicily. At that first meeting Maya (2 1/2 yrs. old at the time) looked at her "Baby Cis" laying in her hospital bassinet with all her many tubes connected and simply smiled and stated, "I think she is so cute!" All the nurses warned that Maya as a typical 2 year old would try to play with Cicily's "extra equipment" and may have a more difficult time with sibling rivalry as a result of all the extra attention Cicily would receive. Maya the super sis has proven them all wrong. She's just loved her Baby Cis and never imagined that anything is out of the ordinary with her. For a few months Maya would recount stories of when she herself "was a baby and had a trach". Instead of being jealous of Cicily, Maya was excited that all of her doctors' appointments meant more time for playing with friends and family! Before Cis could sit up, Maya would find ways to play with her laying down, like sending a balloon flying over her head. Last week Maya was "teaching Cis how to stand up" by standing in front of her and saying, "see, you stand on your feet like this."
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.

Photo Album - 13 months

Halloween!!!

Maya was Hermione Granger (Harry Potter's magical friend), and Cicily was her cat, Crookshanks

(I didn't get these on last month - oops!)

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!

Making friends

I know that one of Cicily's purposes in life is helping others to appreciate and enjoy what life brings. Apparently Cicily knows this too, and is working at it already. However, I didn't know she would do this all by herself so young!

Our family went to Disneyland this month and had a fabulous time. Cicily was entertained the whole time. Whenever we were in a line or sitting down somewhere, she'd make a friend of someone around us. She'd find someone behind or next to her and look at them until they saw her and then she'd shoot them one of her huge Cicily smiles. I had so many people say how cute and friendly she is. She also does this sign where she holds out her fist toward someone in a straight arm greeting. I personally think it's a primitive I love you sign (especially when she does it to me!). So she gave those out to lots of people at Disneyland, and then she started to wave too while we were there. I guess our family's going to have to start learning how to be more friendly to strangers. Glad we have our baby to teach us! :)

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.

Cicily's 1 year old portraits

Thanks again to Cicily's personal photographer- Grandpa Snell for all the beautiful pictures!!!

Photo Album - 12 months

CUTE! We love this dress and bow made by Aunt Mari
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.
Fam
How Cicily spent the reception.

(Can I go a month without a sepia sleeper pic?! :))

Woah Baby! Loving a Dum-Dum!

Laughing!!!

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.

Cicily's 1 year old Birthday

Thanks to everyone for all your wishes/gifts/love for Cicily's happy birthday. She had a fun birthday filled with only one appointment, presents, and fun! On the Sunday after her actual birthday she had a birthday party with all the in-town family. The party was in our newly redecorated (grass, flowers, vegetable garden) back yard and we had a BBQ, presents, and Cicily's own cheesecake birthday cake.

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

Opening presents!!!

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!

HAPPY 1st BIRTHDAY TO CICILY

I'm ONE year old today!!!

Photo Album - 11 months

Tummy Time
Eating carrots!
Sleep study

Wow, that's a lot of wires! It didn't seem to bother Cicily one tiny bit, she slept great as normal.

Maya loves to feed Cicily and Cicily loves to have Maya feed her!

Nobody does a smile like Cicily!!! I love it!

Cicily's first word!!! (or sign for those who make a distinction)

Chris and Cicily were playing last week - a game they play where Chris puts his head down and Cicily pats his head to get him to lift his head up and give her a kiss. Chris stopped for a minute and apparently Cicily was not done! She looked at her hands and with real determination put them together and apart repeatedly, signing "more". Then she would sign more and point to Chris' mouth. So we like to say her first words were "more kisses"!
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.

Upcoming Surgery - BAHA implant (stage 1)

*Postponed*

In taking with Cicily's craniofacial plastic surgeon (Dr. Singh) last week, we've decided to wait to have her BAHA implant done for another couple years. We are in the process of collecting opinions on the timing for this surgery. The factors in question being improved sound quality and bilateral hearing vs. cranial bone density.


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:
http://www.cochlearamericas.com/Products/2013.asp

Journey to being an Oral Eater

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!

Performing her own "oral stim" therapy! Using one of her many therapy toys- a vibrating toothbrush We get excited whenever she puts anyting in her mouth!

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.

Our little game player

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!

Photo Album - 10 months

An advantage of having a trach! I went to check on Cicily one morning and her face was smashed right into the bumper of her crib.
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!?!

Photo Album - 9 months

Isabel & Cicily - We left them on the floor to play and in our hotel room and after a matter of minutes they had the contents of Ondria's purse scattered and shared! Lookout Gma and Gpa's playroom in a couple years!
:) 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"