Three Years!!!

Cicily giving kisses to her new baby. Maya gave her the doll and it is her favorite!!

Opening presents, while getting a breathing treatment and a g-tube feeding - all in a morning's routine - even on her birthday.
Cis' new HUGE horsey Grandma and Grandpa gave her.
Maya and A.J.'s hiding spot from which to jump up and yell, "Surprise Cicily, Happy Birthday!!"
Birthday party- opening presents from cousins.
Dad helping Cicily get some of the booty from the pinata, before it's all spoken for.

Cicily turned 3 years old last week! What an adventurous 3 years it has been! Cicily's packed so much into her 3 little years - too much in some ways and not nearly enough in other ways. I'm not sure how many times I've rejoiced that she was able to be here to celebrate her birthday with us. The night before her birthday as I sang to her before bed, I was crying thankful tears that we get to see her smile on her 3rd birthday.

The morning of Cicily's birthday, she opened presents. She got lots of birthday wishes on her special day. The next day we had a surprise birthday party for her. All her grandparents, and most of her cousins, aunts, and uncles celebrated with us!

Cleaning a Toilet

Cicily was a little quiet and I hadn't seen her for a few minutes, so I asked Maya to go see what she was up to. Maya comes back, laughing and says, "Mom you're going to want to see this, come on." I followed her to the bathroom and this is what I found.

How many Moms get the chance to feel sincere joy at a scene like this??? I love it for a few reasons: 1. She somehow reached all those things and manipulated them appropriately. 2. She knows what to do with a toilet brush and toilet paper. I've never taught her that. We know she's cognitively on target, but I always love seeing proof! 3. She was LOVING it! Loving cleaning a toilet.

My Nurse

This is my very own nurse Kelly. She comes to play with me everyday except for Wednsdays and Saturdays. She also takes my temperature and listens to me breathe. I love playing with Kelly everyday, I wasn't ever nervous around her like I am some new people. I like that she wears glasses like me! Kelly is learning all about me and my little extras, today she even changed my trachy. Hopefully she can go to school with me in October to keep me safe. Thanks for being in my life Kelly!

White matter specialist appointment update

We took Cicily to see Dr. Bonkowsky in Salt Lake City this week. He is a PhD/MD who researches white matter diseases (leukodystrophies - I'm going to have to get used to spelling that one!) He confirmed that Cicily does have hypomyelination (an absence of the white matter/ myelin coating her brain). He also was somewhat surprised to see her abilities given her limited white matter. From what I understand (which is not a lot, as I'm learning yet another set of medical jargon), hypomyelination is caused by an underlying leukodystrophy. According to Dr. Bonkowsky, 30-50% of leukodystrophies are undiagnosable at this point and none of them are treatable/curable. The United Leukodystrophy Foundation has some good information: http://www.ulf.org/ Cicily's leukodystrophy is "static" though, meaning she should not get progressively more severe.
Dr. Bonkowsky suggested 5 more tests in addition to the other ones her doctors here have already done to identify the leukodystrophy or what causes her hypomyelination. The good doc also enrolled Cis into his research pool to use her case in future research and inform us if there are any new developments.

So Cicily has "Treacher-Collins - like syndrome" and a currently unknown leukodystrophy. It's a novel combination and Cicily will show us all how they affect one another and what she can do inspite of it all.

Glasses Girl!

I just want Cicily to be normal

"NO! I just want Cicily to be normal." That's what Maya said when I told her that Cicily was going to get to wear glasses. I was quite surprised at these strong feelings. First of all, I hate using the word "normal". Second, glasses are pretty common! Third, trach, hearing aids, eating through a tube - not exactly "NORMAL"!
So Maya and I had a discussion on how lots of people wear glasses and it helps them see and Cicily is really excited about wearing glasses. (She actually is, we tried them on at the store and she was loving it! Though it may have been all the helpful people surrounding and oogling her more than the glasses.) It sort of seemed by what Maya was saying that she just likes Cicily the way she is and worried glasses would change her Cicily-ness or something. But, by the end of the conversation Maya was saying she wanted glasses too. I told her maybe Cis could share.
Tune in in a few weeks to see a picture of Cicily sporting glasses in all her normalness.

No longer the "hated foe"

In the past I've referred to Cicily's trach as the "fondest ally and hated foe". I honestly no longer feel that way. I'm so glad she was able to have it out for 2 wonderful months. But I have to say I am honestly so happy to have it back! Now I can suction all that junk out in the morning, and not have to coax her to cough and hope she's just working it all out every day. I can hear her raspy breathing and stick a catheter straight down the tube! I think she'll end up being more healthy this winter with a trach than she would have without it. Who am I kidding, she wouldn't be here this winter without it. And that is the biggest reason I am 100% ok about the trach for now - it will keep my Cicily alive.
It's also weird, when I heard Cicily laugh for the first time hearing her voice I cried. I loved hearing her voice every time she laughed with her trach out. In fact, she was just getting really good at it and really loud with her babbling and talking too. But, the first time I heard her laugh after her trach went back in, it was like seeing an old friend again. It didn't make me sad like I thought it would, it made me smile.
I'm also relieved each time she cries really hard because now I know with her trach back, she'll calm down and breath. Without her trach she'd cry really hard and turn purple. It's such a relief. Maybe the new perspective is just all the prayers you've all been saying for Cicily and our family?? If it is, keep them coming!

And for now I want to say - Welcome back trach, you are no longer my hated foe, but my ally. Thank you for allowing my little girl to hold on to her gift of life.