best friend

Cicily has been so lucky to have her nurse Kelly to come play with her and take care of her for the last year and a half. Kelly has spent many hours reading Cicily books, swinging her on swings, carrying her around the house and parks, suctioning her trach, cutting guaze, doing her beautiful hair. . . and most importantly loving her. Kelly is too skilled as a nurse, however, to limit her talents to just one lucky girl! So she recently accepted a job at a hospital. We're sure Cicily will miss playing with Kelly almost every day like she has done. We never expected when we decided to have a nurse in our home taking care of our Cicily that she would become part of our family and love Cis like Kelly does. You will still be welcome to come and play with Cicily anytime you want to Kelly!

Kelly and Cicily at Cis' 4th birthday party

A day at the park

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!

Difficult to Accept (a note from Mom)

Acceptance - it's the 7th and final stage of grief. I don't know that I've been through each of the infamous 7 stages in the past year and a half since we learned that Cicily had brain issues in addition to her craniofacial symptoms. And, I'm quite certain that I'll randomly travel back through the irritating 7 stages in the years to come. However, I have started to feel the first honest feelings of true acceptance.

Accepting that Cicily, due to the lack of white matter in her brain, is not improving in how signals are sent to parts of her body.

Accepting that her gross motor control is not improving and she will very likely need a wheelchair to get around (sadly you can't crawl everywhere).

Accepting that Cicily may never learn how to breathe without a trach. This one is much easier to take now for me after seeing how hellish her life could be without a trach. I also do think she could still learn to cough and swallow and breathe without a trach, but don't see it happening until she's a lot older.

Accepting that her brain may never solidify the correct pathways to obtain speech. I'm SO happy we taught her sign language and she uses it.

Accepting that eating via your mouth is over-rated. Cicily doesn't feel she's missing out by only getting to taste food, why should I care?

These and others are things I've begun to accept. Some days it's easier to do than others. Other days like when I read a report detailing how Cicily is not meeting any of her therapy goals, or when her big sister Maya asks if Cicily will ever talk like we do, or when Maya goes to a friends' house to play and I wonder how or if Cicily will ever do the same, or when I worry about how Cis will feel when her baby sister can start walking away from her.

-Ok, I'm back. I started writing this post a couple weeks ago and then started crying and didn't feel like finishing it. That's why I try to stay positive. It's much more fun to focus on good things in life instead of miring in the not so good things.

So I'm accepting that this is the way my Cicily was meant to live. She'll have a trach, g-tube, and wheelchair. But, she'll also continue to be happy and determined. Watching Cicily live her life and taking care of her with all her extras has taught me a billion and one things. I'm honored to be her Mom and to hopefully make her life a little more enjoyable.

animals, colors, and shapes - oh my!

Next time you see Cicily you'll have to ask her to demonstrate her vast knowledge for you. She's known animal names for a year or more now, but recently we just discovered she definitely knows all her colors and shapes. Around a year ago she could get the right color or shape about 50% of the time you asked her, but now she can identify them all and sign the correct sign for them. It's not something we've overtly "worked" on. Most of the adults in her life (mom, therapists, etc.) just point them out as she plays and she's officially picked them all up now.
As we've said before, Cicily's mental abilities seem to be right on track. It's nice to have her prove that every once in a while with things like this though.
Other smart things she's demonstrated lately - Cicily can tell you which emotion should go with which situation (ie. happy when you see Sophie). She also can identify some letters. She's also great at remembering books. She'll sign something that's going to happen on the next page when we're reading. If you recite a line from one of her books just randomly as you're playing with her, she'll get a knowing smile on her face and laugh.
It's nice in the midst of all the things she's not doing well to remember all that she can do!

Big Sister Cicily!

Introducing Cicily's new baby sister - Sophie
The first of MANY kisses for her little sister.

This is the first time Cicily got to meet her little Sophie. Cicily couldn't quite smile big enough to show how happy she was! She wanted to hold her immediately and hasn't stopped wanting to hold her since. Occasionally Cis will get to hold Sophie for over 20 minutes and finally she'll say she's done and want to go play.

Yesterday I was feeding Sophie on a chair and needed a blanket for her. Cicily was wanting to come see Sophie, so I tried to distract her and asked her to get Sophie's blanket for her. Cicily was quite happy that I had asked her to help. She crawled right over to the couch where the blanket was. On her way there she had to crawl over a pillow and toppled on her head. She lost her hearing aids and started crying (not sure if she got hurt or she was upset to be deterred from her task). She brought me her hearing aids so I could re-place them for her. Then she crawled right back over to the couch and got the blanket down. About 5 minutes after I had asked her for the blanket, Cicily held it up to me. She was beaming! She had succeeded in helping her baby sister and her Mommy. It was so sweet and took so much effort, I cried.

Anyone need a little suction?

Cicily has been very interested in playing with her suction machine lately. She started out suctioning her doll that has a trach. Then she moved on to suctioning her dog Lucy. Now she likes suctioning Daddy, Maya or whoever will let her! She also likes to hold on to the tubing and help us when we're suctioning her. I remember when she was a baby hoping that she'd never have a trach long enough to suction herself. But honestly now I think it's really cute. I love that her life is full of things most people never have a chance to learn about and that she can make pretty much anything a fun game.

Cicily's 5 focus words

bye
bus
book
baby
mom

Something Cicily's speech therapist said a few weeks ago got me thinking. Cis' brain has a hard time getting all those complex mouth muscles to work in just the right order to say words. (And not even to mention the repaired cleft palate, trach, small jaw, open bite, and hearing loss - sometimes speech for this girl seems impossible! Thank goodness she signs!!) Sometimes Cicily will say a near-perfect version of a word and we'll get all excited and ask her to say it again and she'll smile huge and try and nothing much comes out. So, I asked her speech therapist what she thought about maybe just focusing on getting Cicily to say (verbally) 5 words at a time. That way maybe her brain and muscles could get some "memory" going on and Cicily could be successful with at least 5 words. Her therapist thought it was a good idea, so we came up with 5 words that started with similar sounds and were important to Cicily. For the next few months Cis will be working on these 5 words: bus, bye, book, baby, mom.
So, next time you see Cicily, try to get her to SAY bus, or say bye to you! She always gets really excited to try!!

Riding the Bus!

Cicily FINALLY got to ride the bus to school today. She's been very excited all weekend to ride in her "bus chair" on the bus. We've been attempting to get her a stroller/wheelchair that is bus-safe since October. She can't sit on a bus seat alone because she's not steady enough, so she needs a chair that can tie down safely to the bus. The chair is medical equipment, so we've tried to order it through her medical supply company that supplies all her trach stuff. Due to an incredibly incompetent person on staff, the order was lost for a few months, and since January it's been approved by our private insurance but fought over by both of her government insurance companies. (I LOVE that we have those government run insurances for her, I really do, but why does everything go horribly wrong when the government gets involved??) So finally a couple weeks ago, Cicily's lovely teacher at school said someone donated this nice chair Cis could use until her insurance companies can finally decide to help a little girl like they should instead of arguing over who's responsible. (If I sound a little annoyed, it's because after I've spent over 60 or so hours on the phone over the last 4 months, Cicily still doesn't have what she needs.) But anyway, thanks to a great family for donating Cicily's loaner chair and to Cis' teacher Miss Marli for matching Cicily up with it!!!

On the bus this morning. After boarding the bus, Cis got a little nervous. I told her to smile for a picture, and she tried, but all she could muster were funny grimaces like this!

Cicily's all tied down and set to go. This is her wonderful nurse Tami that takes care of her at school. She helped Cicily to be happy about her first trip on the bus.

When Cicily came home from school Maya, Lucy and I were waiting outside for her. She saw us through the window and smiled huge and waved. Then as we were eating lunch, we were talking about her riding the bus and she signed "phone" and "grandma". She wanted to call her Grandma and tell her about her bus ride.

stroller for sale

Last year we bought this stroller: http://www.babytrend.com/sit_n_stand_dx/SS74740.html It's a stroller with a seat for a small child and a sitting platform for a larger child. Our thinking was that by the time Cicily had a smaller sibling this year, she'd be steady enough to sit on the platform of this stroller. Unfortunately she is not more steady and still cannot walk on her own. So, I asked a couple of my friends who have also had non-walkers and a baby, and they said a small double jogging stroller is a must! For us to get into doctors offices, therapy offices, etc. without making more of a commotion than we usually do, we'd like to buy one of these: http://www.philandteds.com/upload/index.php/push/46 A Phil and Ted's double stroller that Cis could sit in for years to come. (Never, ever thought I'd spend $500 on a stroller!)

If any of you out there know of someone who would like a Sit and Stand stroller, we'd love to sell them ours! It's been used a total of 3 times, so it's pretty much new. Thanks

Straight hair and a note

We straightened Cicily's hair just for fun yesterday. She thought it was funny when she looked in the mirror and was very excited to show off her straight hair to Daddy when he came home.

Have I mentioned how much Cicily loves school? She has a fabulous teacher, nurse and therapists. The kids in her class all get excited when I drop her off. Her friend Emma comes over to talk to her and a couple of the boys in her class get her wagon ready for her to sit in. She loves the attention! On Thursday she had occupational therapy and her therapist sent the following progress note home about their session: "Great working - except her social nosiness keeps getting in her way - she is just too cute!" That's pretty much Cicily in a nutshell - social, nosy and very cute!

New Teeth

I told Cicily to show me her teeth so I could get a picture of them. I'd say she obeyed quite nicely!

Here are some pictures of Cicily's new front teeth. (Compare these 2 pics with the ones from Cicily's first day of school to see the teeth difference.) Dr. Carter put crowns on her 4 top front teeth last Friday in surgery. They look so good. We were expecting more "chicklet-like" teeth, and these really look natural. Once again, we got a great doctor who did a great job with our girl! Sadly she still seems sensitive to cold foods, but we'll see how that ends up.

Baby Love

Cicily has been LOVING babies lately!! Fortunately for her she has two new baby cousins, Liliana and Monique. Here are two pictures of Cicily adoring Monique. They both came to visit over Christmas time and Cicily wanted to hold them all the time. None of the hold for 1 minute and I'm done either, she would sit and hold them for a long time just looking at them and smiling.

I think she must recognize a fellow pure soul when she's around them. We're glad she's getting some good practice being a big sister. Come June, Cicily will get all the baby girl snuggles she will ever want, and she's quite excited about it!

Surgery coming soon

Cicily will be having her next surgery on Friday January 29th. This surgery will be entirely for dental work. She'll be under general anesthesia in the OR and the dentist will be doing all the dental work she needs done all in one shot.
Dental work being done:
Crowns on all four of her top front teeth. Those four teeth are small and grew in without enamel and decalcified. This means they've been very sensitive to cold foods. Hopefully the crowns will protect the teeth from cavities, make them less sensitive, and make Cis' smile even cuter.
Seal her molars. This protects them from decay.
Do a good deap cleaning
Fill any potential cavities she may have.
So it should be a fairly easy, relatively painless surgery.