A small tribute to the doctors

She has around a dozen of them that she sees regularly. Most of them are stellar physicians. And some of them we think are so amazing we'd like them to look after her all her life and have given prayers of thanks that they've been there when Cicily's needed them.
The first one was Dr. W, who along with Drs. F and M arranged the most beneficial way for Cicily to be brought into the world. Dr. W cared for her and our whole family and ensured we were all adequately set up for her life. Then there's Dr. M who at her birth told me that he and the other doctors were praying for us. Dr. M has re-arranged his schedule to help Cicily on 3 occasions. Dr. S was next to come into her life. In our opinion, she is a brilliant and capable surgeon. At the last appointment she told Cicily she looked forward to getting a big hug from her someday. Her pulmonologist and pediatricians have been wonderful to work with as they try to figure out what medications to give her to keep her healthy and non-antibiotic resitant.
It's so amazing to think there are so many people out there - doctors, therapists, nurses, medical assistants, family, friends, strangers - who are looking out for our Cicily and wanting to make her life as great as it can possibly be. It's been my pleasure as her Mom to be able to "share" her with all of them and you.

Cicily's Shakes (food)

People seem to be very interested in Cicily's eating and it's a bit of a new hobby for me, so I'm going to explain what she eats. I've explained her g-tube and pump situation and how she was eating breastmilk until 10 months old. But, now she's over a year and should be eating normal solid food. How does she do this you wonder when she can't swallow very well? The standard answer is to give special medical formula for kids (like Pediasure). This formula consists basically of water, vegetable oil, corn syrup, milk, and added vitamins. I just couldn't imagine mixing up a shake with these ingredients and feeding it to Maya every day and feeling like she was getting adequate nutrition, and I feel the same about Cicily! So, I've gotten into mixing a very thin shake of all real food for Cicily that we can send through the tube. It's called a "blended diet" and it's sort of a movement in the g-tube community. I've joined an online group to help get ideas and trouble shoot.

So here's how we prepare Cicily's "shakes". Start with a Vita-Mix blender- an absolute must have for a blended diet. It's a commercial grade blender that's downright amazing! I cook whole grains - barley, quinoa, wheat, millet, oatmeal, etc. Then every day I toss the grains, vegetables, fruit, meat, flaxseed, olive oil, coconut oil, and water into the blender and blend for 3-5 minutes. The result is a wonderful, thin shake that we can feed to Cicily 4 times a day via g-tube! She's the healthiest 1 year old I can imagine!! No processed toddler foods like mac and cheese or sugary ice cream for this girl! She eats great foods on a daily basis like: yogurt, almonds, spinach, flax, broccoli, whole grains, blackberries, beet greens, squash, salmon, etc. My Grandma would be so proud! Sometimes I even get to pick her food fresh from our own garden. (I'm sounding a little extreme now :)) Chris and I always joke that we should start drinking our own "Cicily shakes" and that when she gets rid of the g-tube and starts eating chicken nuggets and other normal foods, she's going to get sick.

Like I said, it's a bit of a new hobby for me to see just how healthy I can make the food I pump into my baby. If anyone has suggestions/ideas of super great foods or combinations of foods- let me know!!!

Photo Album - 14 months

Tummy Time - As you can see, Cicily's not a huge fan of the tummy time thing. She typically moves around, cries a bit, manages to shirk her BAHA, and then if left long enough (20 mins) she falls asleep! Although this last week she has actually started enjoying being on her stomach. That is, if she feels she got there on her own accord and wasn't forced into it!
More therapy poses! Cis loves sitting on this step stool and playing with her table. The first time she did it she stood right up on her own and had the hugest smile! She was so proud of herself!!
Hohokam girls

Hello, our Daddy's an archaeologist and for fun on weekends we go to museums and archaeology sites. (This is at Pueblo Grande in Phoenix)

Cicily LOVES her new hoodie towel! Thank you Lois!!!

She's getting into mischeif - YAY!!! Cicily was riding her bike and rode on over to the tree to play with a few ornaments. I know some moms think I'm crazy, but when you work daily on getting your child mobile, having them move and get into things is a fabulous accomplishment and a happy day!

(Oh, this is after she tipped her bike, but she remained happily playing on the ground, under the tree.)

You actually can't see it too well in this shot, but this is Cicily's first pony tail. I think we could have actually gotten her long hair into a pony the day she was born almost, but this is the first time we attempted it.

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!