The winner is...

Cicily! She colored an Easter bunny for a coloring contest at Fresh & Easy and she won first place!!! She was quite proud when I told her the news. Here she is holding the Easter basket she won. I wish I would have gotten a picture of her coloring page. It was true Cicily style- color waves all over the page (some people may call it scribbling) and crinkled paper. Our thanks to Fresh & Easy for choosing as their winner a coloring page with it's own unique style!

Friday Fun

Since Cicily was a baby, we've tried to keep Fridays our fun days. Free of dr.s, therapy or anything else. Since we don't have to go anywhere, we don't even have a nurse come to help out. So when Sophie takes a nap, it's just Mom and Cicily time. This is what Cicily has been REALLY into lately on Friday afternoons:
She gets to chose the color of toenail polish for herself and me. For Christmas she got these fancy stickers, so she also decides which sticker to have. Then she lays down and gets a pedicure. She's always excited to show off her toes to Maya and Daddy when they come home and to her nurse and teacher on Sunday!

I love Fridays

ambulance to ER

Cicily received her 3rd escort to the ER via ambulance on April 12th. She had a wicked respiratory virus complete with fever for a few days. On that Tuesday she had her morning breathing treatment, breakfast, and then bath. In the bath she was very upset, so I washed her quick and took her out. As I was holding her in her towel she got really rigid and despondent. Her color turned almost grey and she started "posturing" as her nurse Michelle calls it. When we hooked up the pulse-ox to check her oxygen level it was down to 78% (bad is anything less than 90). So, I asked Michelle to call 911 so an ambulance could take her to the hospital. We could have transported her in our car with oxygen, but it wasn't worth something happening en-route. She was totally out of it in the ambulance, probably doesn't even remember the ride. I'll never forget sitting there watching her eyes glazed wondering if I'd ever see her smile again. In the ER they hooked her up to oxygen (as we had at home), ran some blood tests and took a chest x-ray. They all came back normal. (It's shocking to me how many of this girls' tests come back normal! She's very normal for a not-normal child!) Cicily was completely back to normal within a couple hours, so they sent us home with no clues as to what happened.


After talking to Cicily's neurologist's nurse, my best guess is she had a seizure. This is new ground for me and it was scary. Give me a plugged trach, pneumonia, a blocked airway of some sort and I can handle it. A seizure- what do I do with that? I guess the unknown is scary. And, I guess we'll get used to it and become pros like we always have in the past.


Later that same night, Cicily was smiling non-stop and asking to play with her chickens and her swing set.


Here's a picture of Cis giving Sophie a ride into the house on her chair after coming home from school yesterday. -Still smiling!

Preschool Olympics

Cicily's school held their annual Preschool Olympics in Feb. Sophie and Mom got to go watch Cicily "compete" in sack races, bean bag toss, crawl through, paddle ball, etc. Cicily's teacher, aids and nurse were fabulous as always to help Cicily participate in all the action. Cis really enjoyed most of the fun games. At the end she even got a trophy and had her class sing to her.

A new friend

Michelle! This is Cicily's new nurse (well, new as of January, not really new anymore). Cicily loved Michelle from the very first day with her. Really! I had to keep reminding myself that all of Cicily's "extra stuff" was new to Michelle, because she fit in so well with all of us. When I talked to people about Kelly getting a hospital job, I'd say I was nervous about getting a new nurse but that I had hope it would be just fine because Heavenly Father always takes care of His Cicily. I should have more faith! Michelle could not be more perfect for Cicily right now. It's amazing really. Kelly was in Cicily's life full-time at just the right time for Cicily and our family and now Michelle is perfect for a whole different set of reasons.

Some of Cicily's favorite things to do with Michelle:

play a variety of new games with the chickens

give Barbies, Dora or other toys a bath

go for a walk

have Michelle sing "Enchanted" by Taylor Swift really loud to Cicily on the way to hippotherapy (hope you don't mind me sharing Michelle :))

and lots of other games, fun things I'm sure I haven't been around for