Getting worse

Cicily is scheduled to have another MRI of her brain on Dec. 2nd. Chris and I, Grandma DeEtte, and some of Cicily's therapists have noticed an increase in "shakiness" in Cicily in the last 9 months or so. She doesn't have enough fine motor control to sign as well as she once could. She is too wobbly to sit on any kind of chair without support. She still crawls, but in a more sitting posture and gets tired of crawling more quickly. Those are a few examples.
So, Cicily's neurologist (well, our favorite neurologist of the 6 or so she's seen) agreed it would be a good idea to have another MRI done. Maybe somehow eventhough she had no white matter to start with at 2 years old, it could somehow get worse?? Who knows!
We're anxious to see if the MRI shows any change in her brain in the last 2 years.

Happy Halloween!

Here's Cicily in her Halloween costume (she's a nurse), just off the bus from school. They had a Halloween carnival today where she got to play games, carve a jack-o-lantern, have a costume parade, and get a face painting. I love this picture - the smeared pumpkin on her face, the frosting in her hair, even the bright yellow trach vent. That's Cicily, loving life!

Birthday Party

Grandma DeEtte and Cicily sharing a birthday chat. I showed this picture to Cicily and she signed "hugs and kisses". She must have enjoyed giving Grandma hugs and kisses!

Everyone that came to the party made a page in a book for Cicily. She has LOVED reading this book. She asks for it every morning while she's getting her breathing treatment. It's sweet to see all the reasons Cicily's family loves her and what they like to do with her.

Grandma Sue reading to Cicily and her cousin. Cicily got lots of books for her birthday. That's pretty much the only thing she's wanted to do lately is read books.

Cupcake time! Cicily's cousins lined up in a row, ready to sing and eat cupcakes.

Mom and Dad helping Cis blow out her 4 candle.

Cicily voted for candy corn cupcakes this year.

Wheelchair obstacle course game. We tried to think of fun games that Cicily could do and would like. Cis loves being pushed crazy in her chair. We thought 14 young kids pushing her crazy would be a bit dangerous though! So Chris made this obstacle course that they had to maneuver through slowly. All the kids liked it. But Cicily still prefers the faster, crazy version. So, Grandma pushed her fast and crazy back to the house.

Cicily and her best cousin Brynlie. Brynlie and Cicily love playing together. It makes me happy.

The next game was Cicily in the box. Cis loves playing with boxes - crawling in and out of them, drawing on them, spinning in them and driving them. So we brought a sturdy box and had all the cousins go for rides. It was definitely a hit! We're thinking a box is a good present for some of the cousins' next birthdays!

Happy 4th Birthday Cicily!!!!

Happy Birthday sweet Cicily girl!

Thank you for letting us enjoy life with you for 4 years.

(cute birthday party pictures to come)

A summer in pictures

Kisses, kisses, kisses, and more and more kisses for Sophie!
Swimming in a boat built for two

Family

Trampoline jumping with Maya

Books with nurse Kelly. Most days 1-2 hours of books with Kelly.

Cicily loves her Kelly (and books).

Silly sisters. Sometimes Cis gets to take Sophie for rides in her new chair.

New bed and bedroom

pigtails- just for fun

A fun bubble race with bubbles from Japan. Thanks Cesars!

First day of school. Cicily went back to preschool today. She goes to the same school as last year. She's extremely lucky and gets to keep her same teacher, nurse, therapists, and aids. She was so happy to go - no tears at all.

Big Girl Bed

Cicily has a new bed and a new bedroom! We thought and thought and thought some more about what to do with Cicily after we had a baby and she could no longer sleep in a crib. Some complicating factors were: all the wires she was hooked up to at night (pulse-ox, feeding pump, humidifying mist), she's not physically able to get out of bed on her own, falling out of bed, limited space in her new room with Maya already in there.
So, we came up with the idea for a day or trundle bed. That way Cicily would only be up off the ground a few inches. And we (hopefully) figured out ways around the wires.
Chris set up the new day bed last week and the girls tried it out. As you can see, they love it! It actually works much better than we anticipated because the bed we bought happens to have 2-3 inches of space from the top of the mattress to the top of the frame. So it's like Cicily's sleeping in a short box. She's done pretty well with the transition of sleeping on a new bed in a room with her big sister. Gotta love it when things work out better than expected!!
Maya sleeps on the top bed that Cicily's trundle fits under at night. Maya was so excited to have Cicily sharing her room, until Cis kept her up until 10pm the first night trying to play! They've both gotten used to it now though.

We had a HAPPY 4th of July!

Cicily and Sophie in their 4th of July outfits. Cicily's cousins made her shirt for her last year while she was in the hospital. Cis loves sitting in her purple chair and holding Sophie!

The last 2 years have been pretty bad 4th of July's. I was honestly getting nervous this year! In 2008 Cis was just barely home from the hospital, sporting her jaw distraction jewelry. The 4th was the first day of torture, when we started turning her screws. July 4th 2009 was the day after Cicily's heart stopped beating. We spent the day in the hospital's ICU, worried about the possible lasting effects of the previous day's episode (there were no long-term effects fortunately). Cicily had pneumonia and didn't come home for 2 weeks.
But July 4th 2010 was very lovely!! Cicily got to go to church, play with her sisters, have a barbeque at Grandma and Grandpa's house, and watch fireworks. The last 2 years made this 4th even better!