Cicily's Adventures

Animal Kingdom and Magic Kingdom - Day 6

2012-01-28T20:53:00.001-07:00

This was our last full day. :( BOO HOO! We started the day off with breakfast in the Gingerbread house and a carousel ride at GKTW. A lovely way to start the day - delicious belgian waffles with strawberries and cream and a carousel ride. Life doesn't get better than this trip has been!

We hadn't been to the Animal Kingdom yet, so that's where today's fun was had. We saw a bunch of birds and ducks on our way to the safari ride. This ride was super cool. All the girls loved it.

We saw these huge nile crocodiles on our safari. I'm pretty sure I got goose bumps seeing these monsters sunbathing and walking on the rocks.

Whenever we saw an animal Sophie would say, "woah giraffe! (or other animal we were seeing), more giraffe, more giraffe!" Her favorites were the giraffes, elephants and hippos. Cicily and Maya also loved the giraffes.

We went on a nature walk and saw more cool animals. Here we are in front of a big aquarium. If you look closely in the tree in the background you can see these cool hanging bird nests. The birds that built them are a beautiful yellow.

Next we went on a train ride to a petting zoo. Sophie fell asleep in the stroller on our way to the train. She must have been exhausted, she never falls asleep outside of her bed. And then she stayed asleep for the train and petting zoo! Therefore, no pics of the petting zoo. Cicily liked this little pig that kept coming up to her and of course the goats! Maya liked brushing the sheep. Oh, and here we are with Rafiki.

After Animal Kingdom we headed over to Magic Kingdom. Maya and Soph shared another double stroller.
Here they are with their cousin Mikey's balloon. We were pleased that we could participate in this special day and share our love for Mikey. http://cesarfamily.blogspot.com/

That is where the pictures end for our trip (except for a few more Disney photo pass ones). Our camera battery ran out of juice - pretty good timing. We spent most of the day getting videos with our video camera. So, I'll tell you the rest.

(Imagine a picture of Maya smiling while driving her own car with Daddy and Sophie as passengers. And another pic with Cicily smiling while driving her car with Mommy as a passenger.)

This was another thing Cis has been excited about for months. She really liked driving Dad and then Mom around in her car. Good thing they let us ride 3 times! First I went in Maya's car and man is she a crazy driver!!! Chris will have to take the lead on her driving training in 9 years, I don't have that much patience or bravery. Then I drove with Cis and she wasn't bad. She quite appreciated it when I kept saying that she was a much better driver than her big sister!

(Imagine another cute picture in front of Small World with little girls smiling.)

To end the night we jumped on Small World. Since there was no line we got to stay on the boat and ride 4 times - making a total of 5 Small World journeys for Cicily's wish trip. It was the perfect last ride. It happens to be Cicily's favorite ride of course, and Maya and Sophie's as well. As you may imagine, Cicily's favorite part is the last room where all the dolls are dressed in white and dancing and singing together. The angel room as I like to think of it. Very fitting for my angel girl to love.

(Imagine a picture of fireworks flashing in the night sky.)

To send our trip out with a bang, we stayed till closing and enjoyed the fireworks show over the castle. Well, Maya loved the show, Cicily thought it was sorta cool and Sophie hated it (was exhausted). So, we left a tiny bit before it was over and made our way to some very last souvenirs on Main Street on our way out of the park. (Grandma DeEtte would be proud that we left the park 30 mins after it closed, I told Cis.)

Then we caught the ferry boat back to our car. And I made it to the bathroom just in time to empty my stomach of most of the vacation food I've been eating. I guess Maya was right on that ice cream for breakfast idea. I should listen to the good things I've taught my girls I guess!

Sea World - Day 5

2012-01-23T21:20:00.004-07:00

Twice a week Mickey and Minnie Mouse come from DisneyWorld to make a special visit to Give Kids the World. All girls were quite excited to go this morning and see them. Cicily has been talking about wearing her dress that looks like Minnie's to meet Minnie Mouse for months! This was her BIG chance and she was extremely happy about it! Minnie Mouse even noticed Cicily's dress and liked it - which made Cis even more happy!

At GKTW the famous mice can autograph whatever you want. We took all the girls' Minnie shirts and they kindly autographed them. They also autographed the shoes on the cute Mickey that GKTW gave Cis when we arrived.

Today was our Sea World day. When we arrived only Maya knew who Shamu was. When we left, Sophie couldn't stop saying "Shamuuu".

First we went to the Shamu show. We got some treats and were hooked up with some perfect seats.

I believe this is supposed to be the Mom and baby. They're "kissing". I'm pretty sure Orca whales don't really kiss like this, but it's still cute nontheless, especially if you're a Mom watching the show with your 3 girls!

Cicily was the only one of the 3 brave enough to grab the fish and toss it to feed the sea lions and seals. I doesn't look like it in this picture, but she really did like it! With Cis' magic GKTW badge, we got to feed the sea lions, seals, sharks, rays, and dolphins. It was pretty cool!!

When I asked the workers who gave me the fish what we actually do they said, "basically just protect your children from the birds". There were huge, rather agressive, water birds coming at us for their share of the fish we were feeding the sea lions. I got pecked by one, and tried unsuccessfully to convice Maya it wasn't even as big a deal as a chicken peck. Whatever fish the sea lions ended up with, they seemed to enjoy!

This was a pretty awesome fish tank you could walk into. Quite a cool feeling to be surrounded by fish and not be wet!!

FEEDING THE DOLPHINS! This had to be the coolest part of Sea World. Cis again was the only one of the little girls who would hold the fish and feed and boy did she enjoy it!! I tried to get Sophie to pet the dolphin under it's nose and she absolutely refused. I thought it was kinda weird since she's pretty adventurous, then I realized their mouths do gape open with a fair number of pretty sharp teeth!

There was of course, a nice Sea World employee who stuck by us to make sure we got the most out of the experience. She did some kind of hand sign and the dolphins would swim up onto this ledge so the girls could pet them. Maya did dare to pet the dolphin without the teeth threatening. These are Maya's, Cicily's and Daddy's hands petting the dolphin named Lilly.

The girls watching the same dolphins from an underground viewing spot.

Since Cicily hasn't wanted to buy hardly any souvenirs for herself, but LOVES buying souvenirs for others, she bought Sophie this cute dolphin. Here is Cicily happily and lovingly giving the dolphin to Sophie. And here is Sophie greedily grabbing it out of Cicily's hands (can we claim she was just exhausted?).

Just like the other parks, Sea World really took care of us. All the kind special treatment really has made for a wonderful wish trip for Cis.

GKTW and EPCOT -Day 4

2012-01-22T21:10:00.002-07:00

This is a medallion in the heart of the Avenue of Angels at GKTW. It's exactly what we've tried to do for Cicily and encapsulates the mission of GKTW and Make-A-Wish to me. These organizations realize there is not a cure for some children in life. Instead of worrying about what we can't do for children, these organizations do what they can do - provide happiness, hope, memories and joy. That is something priceless to our Cicily and our family.

A delicious breakfast in the Gingerbread House. All the 'angel' volunteers serve you and make you feel so special eating here. Also Cicily is very entertained here because there are thousands of dolls, bears and stuffed animals all around.

A family train ride around Amberville, a family-fun corner of GKTW.

GKTW even has their own mini-golf course! Cicily liked putting the ball! Maya played a full 7 holes.
Sophie kept trying to steal everyone's ball (she loves balls, and we think she was trying to be helpful). It was a great way to spend the morning, we laughed a lot. I love that GKTW has this, it's something I've wanted to do at home, but didn't want to "waste" the money knowing that nobody would actually do real golfing!

Matthew's Boundless Playground. This is the park that is a life-sized Candy Land game. We ate our lunch here and played for quite a while. This is Maya's "classroom" where she wanted Cicily to come play with her. I love it when she wants Cicily to join in her fun. When we told the girls it was time to go to EPCOT, they didn't want to leave! We even told them is was the night to have dinner with the princesses in a castle, something they'd been very excited for at home, still kinda didn't want to leave.

Cis was excited to go down this slide holding hands with her sisters.

Sitting atop the sparkly gumdrops.

Sophie pretending to eat the chocolate bars. She was funny, really sticking out her tongue and pretend chewing and saying, "mmm, yummy!"

We did make it to EPCOT and we were glad we did! It was character central and early on a cast member saw our GKTW magic button and told us to go straight to the front of any character lines. It made for an amazing character day! The girls loved talking and interacting with all of them and having them sign their autograph books! The first character was Daisy. I think she was Sophie's favorite.

Mary Poppins was great! She asked where we were from and when Maya told her she said, "well that's quite a ways for an umbrella trip!" Cicily thought it was so funny!!! Mary let her hold her parrot umbrella. She also asked Sophie to say hi and Sophie happened to be sticking her finger up her nose. Mary replied, "well, not how I would do it, but ok."

We made our way through the EPCOT countries to Norway where we ate dinner in the Akershus Castle. Lots of the princesses were there and they all came to our table and talked with the girls, gave an autograph and posed for a picture. This was the "princess parade". I wanted Cis to enjoy it, so I took her around and helped her with her princess wave. Princesses aren't her absolute favorite thing, but she enjoyed it.

Mulan was cool. She showed Maya how to do a warrior pose. Maya is definitely our princess of the family!

Sophie wasn't impressed by the princesses, but she LOVED making friends with this Disney employee, Trina, and playing peakaboo with her! Trina was so nice.

Possible TMI: After our princess dinner, and a fun little ride in Norway, we needed to change a couple diapers. Very fortunately for us we happened to use this family restroom. It was a little blessing because Cis ended up blowing out big time and Dad got it on his shirt, which he had to wash out. Then Soph had a rashy bum so I let her air out for just a brief minute and she ended up wetting her pants. Fortunately we had a spare pair of pants for Cis and Sophie's shirt was like a short dress. Since we were at Disneyworld and we happened to be in the perfect bathroom, we actually laughed at the mishap, got a picture and went on our way!

Magic Kingdom, Small World! - Day 3

2012-01-21T21:46:00.001-07:00

Today started off with a horseback ride. Cicily got to ride in her pjs! She went first to show Maya and Sophie how it's done since Cis rides a horse every week. It was Maya's first ride on a horse. She's never been brave enough to do it before. She feels so safe at GKTW that she jumped right on. Sophie loved the horse and kept making horsey noises.

Give Kids the World has it's own carousel! This time Daddy and Cis rode on a sitting animal and Cis liked it much better!

How sweet is a garbage can that's a clown's mouth! (Unless you don't like clowns, but these girls do.) Sophie was giggling non-stop when the paper flew into its mouth.

It's a Small World!!!! This is one of the things Cicily REALLY wanted to do when we came on her wish trip. Cicily was so excited when we got on she was signing to call Grandma to tell her about it. So, Grandma got an earful of the song while we rode. We also took lots of pictures of the dolls so we can make Cicily her own Small World book when we get home. We'll also go back to this ride later in the week for sure!

In line for Mickey's Philharmagic. 3D glasses ready!

Sophie was making Cis laugh with this trick - a double fingers up the nose act! A great way to pass the time while waiting for the Tiki Room to be ready for us!

Maya's been so great to push Cis and Soph around the parks. She's been helpful, happy and excited to see her sisters have fun.
Cicily was giddy when I asked her if she'd like to buy some treats to take to her school class. She picked out some chocolate covered pretzels shaped like Mickey. That's been the souvenir she's been most excited about by far. Of course it would be something to give to someone else.

The GKTW night activity was Mayor Clayton's birthday party. A "once in a lifetime chance" according to Maya. We finally broke the news to her that every week they have a party for Mayor Clayton. But then she wisely pointed out that we'd never be back for a party for Mayor Clayton. For the party fun Cicily petted some dogs, decorated a shirt, her and Maya got balloon animals, we ate cake and ice cream, and danced a bit.

After the party we got our nightly ice cream treat and rode the train home. Cicily was loving tasting our banana split. I'm not sure what it is about food on this trip. She must just not want to miss out on any detail of her wish fun!

HARRY POTTER THEME PARK!!!!! Day 2

2012-01-20T21:21:00.091-07:00

We started the day with a bubble bath for the girls in the jetted tub. Then some playtime at the awesome playground here at GKTW. It's an actual life-size Candy Land game, which our girls love. Then we got a picture in front of our villa as the gift fairies were coming to leave the girls a gift for the day. This fairy comes by our villa each day to leave a little something for each of the girls - they love it!

Then it was off to Universal Orlando for HARRY POTTER THEME PARK!!!!! (we can't just say it, gotta yell it) Here's Maya in front of Hogsmeade. When we saw the snow-capped buildings I again got a little teary.

Cicily, Mommy and Maya in front of Hogwarts Express. HP theme park (as we call it, technically it's called the Wizarding World of Harry Potter) is mostly a street made to look like a village in HP, Hogsmeade. So it has shops with various trinkets, clothes and food from the books. There's also a restaurant, the Three Broomsticks. And at the end, there's the actual school, Hogwarts. We didn't go on any rides (the girls aren't real thrill seekers - who am I kidding, neither are their parents), but they do have 3 themed roller coasters and a ride inside the castle. If you're a Potter fan, it's really sweet! Maya's listened to each book at least 3 times and Chris and I have read them all, so we had a great time. Cicily genuinely seemed happy to be there soaking in our excitement.

There's a show at Olivanders wand shop where Olivander chooses a child to come up and have a wand "choose the wizard". In our show Olivander chose Maya to be the wizard. She was stoked! (Although you couldn't tell from her expression. She's "good at acting serious" she tells me.) Her very own wand is the only souvenir she really wanted, so this was perfect. There was a magic show, where her wand chose her and she worked some magic and then we could go into the store next door and purchase her wand. She's been casting spells around our villa since.

Hogwarts School of Witchcraft and Wizardry castle. We got to go inside and see the actual talking pictures and Dumbledore's office. We ducked out on the ride though.

Then it was sorta the day of food. There was a lot of Harry Potter food we were excited to try. The first one was Pumpkin juice. It was pretty good. Sorta spiced apple/pumpkin juice.

Then treacle fudge - just like Hagrid is famous for making. Mmm, we loved it!

But the best was - Butterbeer!! A carbonated beverage straight out of the books and delicious!

Cicily loved the butterbeer! Really, she couldn't get enough. She even got a butterbeer mustache! She's really been respecting tasting food on this trip. First ice on the plane, then butterbeer.

Eating lunch at the Three Broomsticks. Fish and chips, cornish pasties, and chocolate trifle. Just like a Hogwarts feast!

There were two cute shows. The first one we watched was the Hogwarts quartet with singing frogs. Then this one was the tri-wizard tournament show. Everyone at HP was really cool to us. We didn't have to wait in line an hour to go into Olivanders (I couldn't look the people in line in the eye, I felt bad!), and after each show they asked us to be first to get our picture taken. It really does allow us to take care of Cis and still be able to make her wish trip packed full of fun. We so appreciate all the kindness.

After HP we went to Seuss Landing. All the girls love Dr. Seuss books, especially Cicily. We were talking about all her favorite characters. This was a One Fish, Two Fish ride. Cis and Sophie really liked steering it up and down!

Cis thought the Dr. Suess fake-animals sounded fun to ride on the carosuessel. But, after it got started, she hated it. She doesn't do well with motion, something with her brain signals. I felt bad, I just tried to hang on to her and distract her.

Back at GKTW. Each wish child that comes to stay here gets a special star. They put their name on the star and the "star fairy" comes at night to magically take them up into the tower where it stays forever. Cicily enjoyed this special experience.

Each night at GKTW they have some kind of party. Tonight was Pirates and Princesses. Here's Cis with the mayor of GKTW, Clayton.

Other things to remember:

In our rental van Cicily keeps taking her toes and rolling down her window. It's so rare that she can manipulate something and make it work all on her own. Each time she gets that window to move she's delighted. Chris and I get mock-annoyed and she laughs!

Cicily kept asking at various times during the day to call her Grandma and Grandpa and Michelle to share the day with them.

Limo & Give Kids the World - Day 1

2012-01-20T21:05:00.001-07:00

And we are off on Cicily's wish trip!!!!!! This super cool limo picked us up from our house. (Grandpa took pictures - so limo pics to come.) I, of course cried as we were getting in the limo. I couldn't believe we were actually going! And nobody's really sick (yet - can't jinx us). I'm still pinching myself.
The girls were most impressed with the limo! They loved drinking bottled water out of these glasses - as you can see.

Cicily loved the star lights on the ceiling. She has glow-in-the-dark stars on her ceiling at home and so these color changing ones were super cool to her!

Just a goofy Sophie (We've decided she has her funny personality just to keep Cis laughing). She was wheeling this suitcase all around when we got to Orlando. It's as tall as her. She's done rather well with no nap and all the excitement so far.

In our villa at Give Kids the World. This place is even better than we imagined it and we were imagining awesomeness!!! Every one of the staff and huge numbers of volunteers are so very kind. They really just want to make us comfortable and happy. Whether it's a spare toothbrush, changing orientation times, getting Sophie a new balloon when hers pops, or giving helpful park tips. Everyone talks to Cicily and always include the other girls. We've been exploring for two nights and a morning so far and haven't even tapped the massive amounts of fun here! The girls are definitely feeling like they're being given the world.

One of my personal favorites- the ice cream parlor. Ice cream all day long every day. And not just lots of flavors of ice cream, but banana splits, shakes, malts, sundaes, cones, floats - you name it! And, there's not even a cash register here. Just tell the happy volunteers your desire and they serve it up. This is one of the reasons Cicily is loving tasting food on this trip I think! I tried to get Maya to eat ice cream with me for breakfast this morning, but it wasn't healthy enough. Who raised that girl???
Other highlights:
Cicily eating ice cubes on the plane and loving them!
Cicily and Sophie reading, eating, coloring, making animal noises, and of course watching Dora on the plane.
Sophie walking the moving sidewalks for nearly and hour in the airport.
Visiting Santa Claus at GKTW and each girl getting her own present from him.
The gifts waiting for us in our villa (snacks, plush Mickey and Shamus).

That's just the first day - stay tuned.

Day 1 Wish Trip

2012-01-19T22:44:00.000-07:00

Chris here, WiFi is having issues so I'm posting from my phone. Had a great send-off this morning from grandparents and Michelle. It was a special bonus to have Grandpa Norm at the airport to help us get the bags checked and get through security. The limo was a big hit. The girls particularly enjoyed the fiber optic lights that lit up the ceiling like stars. The flight was delayed, so Sophie enjoyed running up and down the moving sidewalks at the airport apporoximately 20 times until it was time to go. Everyone was a good sport on the plane. Sophie is officially too big to be a lap child. A nice guy from Give Kids the World met us at the Orlando airport and helped us get our gear loaded into the rental car. Arrived in time to have dinner and see Santa and collect Christmas presents before heading over to the full-service ice cream parlor. This place is something else. Hopefully we'll get the wifi fixed and Janalyn can get pictures up tomorrow.

Wish Party!!!

2012-01-18T14:12:00.002-07:00

Cicily had her Wish Party last night and it was awesome!!! I know, you'd think that a dream vacation to DisneyWorld would be enough to grant the wish of a 5 year old, but not for MakeAWish! It was a lovely night where Cicily got to share the excitement of her upcoming wish with people she loves. And since she won't get to have a wedding party or a sweet 16 party, we soaked this party up.
The absolute highlight of the night was Jungle Jill!!!! She agreed to donate a show just for Cicily's party. Jungle Jill brought 10 animals that Cicily chose from her website: www.junglejill.com to share with us. She taught the kids some fun facts about each animal, let them pet the safe ones, and took their picture holding an animal of their choice. Her show was funny and educational! If anyone in our area ever needs great party entertainment, I HIGHLY recommend Jill! She had 20 kids and even more adults entertained and enthralled for over 30 minutes. And most importantly she is a genuinely kind person.

Cicily loves this animal - her own stuffed Jungle Jill bear with her name on it.

Feeding the pygmy goat.

Maya got to take the tiny tortoise around for everyone to pet. Jill also had a teeny tortoise- about 6 months old and maybe 1 1/2 inches long - so cool!

The monitor lizard. Jill asked Cis if she'd like it to give her a kiss. I think it was Cis' only negative response of the whole night. :)

I love these boys' expressions! Jill knew they'd appreciate a monitor lizard tail in their face for a thrill!

Sophie petting the sugar baby - so cute!!

Cicily loved petting all the animals that came around. This is a lion-haired bunny.

At the end of the show our family got to send off 3 white homing pigeons. It was really cool! I'm afraid though that Cis and I weren't too great at starting our little guy off. We didn't toss him high enough and he flew into the ramada - really hoping he makes it home!

Thank you wish granters for pulling off a great party!!! And a huge thanks to Jungle Jill for giving us such a great show to remember.

How is Cicily doing?

2012-01-11T13:47:00.000-07:00

I'm never quite sure how to answer this question. I'm never sure if people want the depressing truth, or if they're just politely making conversation but don't want to be burdened with the truth. I am always glad people ask, especially when I feel like they really want to know. Cis was really sick in Oct/Nov. I was really hoping she'd make it to one more Christmas and to her wish trip. What a bummer to miss out on your own wish! She had a series of 3 viruses over a month and her body was just exhausted. Not to mention the typical pneumonia that follows any virus. So we had some days of just sleeping, snuggling and reading books. After multiple antibiotics, steroids, oxygen, etc. at home, Cis bounced back and was able to enjoy some lovely holidays. It made us realize that her body is getting tired though. It doesn't recover as well as it used to.
She is also less steady. I realized the past month while laying by her as she fell asleep that her little body never stops moving unless she's sleeping. That's a good daily workout! Her crawling is almost non-existant now, it just doesn't work for her anymore. She actually is having a hard time balancing enough to sit up too- she'll fall fairly frequently. She manages to sit up in the bath tub on a good day to play with Sophie, and can do well with my hand on her arm the whole time.
I've actually noticed she doesn't say "yeah" as much anymore. She still makes the effort but a lot of times it seems like she just can't push the air out strong enough. She does still have her amazing smile though that lets us know when she's in favor of something! And, there's her great frown to let us know we've guessed wrong while working out what she wants.
The thing that makes me the most sad is she actually finally seems to get frustrated now. She's not quite as easy-going and happy. Maybe she's just a 5 year old? Maybe she's tired of not being able to do things she could do when she was 2?
She still loves watching Dora with Sophie and watching Maya and Sophie be silly just to make her laugh. She still loves feeding her chickens. She still loves going to school and fully participating in whatever her amazing teacher Miss Marli has planned. She still loves playing Barbies, Dora, kitchen, or whatever other fun thing her nurse Michelle plays with her. She still loves building forts, doing flips, or sleigh-riding with Dad. And, she still loves reading endless books, singing and talking with Mommy.

Wish trip coming soon!

2012-01-10T13:42:00.002-07:00

About a month ago we made this paper chain to countdown to Cicily's Wish Trip. Cicily gets to tear a link off everyday. The chain is getting a lot smaller now!!!! It's the new first thing Cicily wants to do when she wakes up - even before she asks to see her chickens.
I have to say again how lovely it has been to talk about and obsess over Cicily's trip these past few months. It has given our family such a joyful lift to have this amazing trip to look forward to. Cicily has not lost her enthusiasm in the slightest for "Harry Potter Theme Park". She still flops, laughs and yells back whenever Maya yells it!
I can't believe it's so close and nobody is sick yet - we've started our immune system-strengthening regimen. I'm starting to think the trip may actually happen! With so many things being uncertain in the past few years, we've all gotten used to plans changing. And, I better stop talking or I may just jinx us. :)
Can't wait to meet all the "angels" at Give Kids the World and enjoy a trip full of wishes coming true!!!

Hope Kids - The Nutcracker

2012-01-05T08:58:00.000-07:00

We just found out about this cool organization - Hope Kids

They make special events available for kids with life-threatening illnesses and their families. Their goal is to give these kids and families something to always look forward to.
So in December we signed up to go to the Nutcracker. It was a very nice night! Cicily really liked the music and even watched the ballet about 1/3 of the time. (Which is much better than her attention at a movie theater!) It was the first and maybe only ballet she'll get to see. What a life-enriching opportunity. She was a smiley girl all night! And Maya loved the music and ballet of course. We're really looking forward to more Hope Kids events!

Santa letters for Make A Wish

2011-12-06T08:51:00.000-07:00

Here's a great way anyone can help give a little support to Make-A-Wish. Macy's is donating one dollar for letters to Santa that are stamped and placed in their Santa mail box in any Macy's store. Here's the link: http://social.macys.com/believe
The girls all wrote their letters to Santa tonight and we took them down to Macy's. Their mailbox is cute. Cicily and Maya liked putting their letters in the special Santa mailbox.
We're always looking for ways to support Make-A-Wish. As you know, we think they're amazing!

Wish Granters cards

2011-11-29T22:40:00.001-07:00

Cicily has been very happy to recieve more mail lately. Her Wish Granters - Liz, Czerina, and Michael have sent her random cards over the last few weeks. It really makes her day to get her own special card from her wish granters! I think everyone should have someone like a wish granter in their life when things are rough.

(I love all the paper from the envelope strewn around Cis - that's how she gets her mail open! It takes lots of time and focus to get those pieces free.)

This card came on the perfect day. Cicily was really sick (which is saying a lot for her) for a couple weeks. There were a few days in a row where we only saw one or two smiles a day. This card came on one of those days and it was good to see that little smile. Thank you! (excuse the unzipped jammies - she was hooked up to breakfast)

I wish to. . .

2011-11-29T20:30:00.001-07:00

Go to Disneyworld with my family! It's going to happen in January!!!
We still can't believe the generosity. We talk about Cicily's wish every day. She is beyond excited. It's lovely to have something so amazing to look forward to!

love

2011-11-19T08:46:00.002-07:00

Never as happy as with her sisters

Cicily's Scripture

2011-11-19T08:38:00.000-07:00

Our family has been memorizing scripture passages lately. Our latest is a scripture we've termed Cicily's Scripture. It's from the New Testament when Jesus' deciples ask him if a man who is blind sinned or if his parents had sinned.
John 9:3 "Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him."
Fortunately we don't live in a time or believe in a faith that teaches that God punishes people for committing sins by giving them or their family members disabilites. We love the second part of the passage that says "the works of God should be made manifest in him".
I've always had great respect for brave people who are willing to come to the world and live in a difficult body. I know Cicily was willing to come to the world in her body so that the works of God could progress through her. I'm so proud of her for her bravery and wisdom.
I love it when someone tells Cicily or lets me know how her life has made a difference in theirs. It good to hear of the benefits of her sacrifice.

Front teeth

2011-11-15T22:56:00.000-07:00

Cicily lost her two front teeth! It wasn't your standard 6 year old wiggling a loose tooth for weeks event. But why be standard when you can be Cicily! She was crawling on our hard floor and fell on her teeth. One tooth popped out immediately accompanied by a lot of blood and the other tooth followed later that night. Cis was obviously crying at first, but then became pretty happy after a few minutes of snuggling and talking about what a big girl she must be to lose her two front teeth. She was excited to leave them under her pillow that night so the Tooth Fairy could come and leave her some money. Now she'll proudly show you her grown up toothless smile!

Cicily loves being a big girl like Maya with no front teeth. We had to hurry and get a picture of their toothless smiles before Maya's teeth grow in.

Cicily Glo's

2011-10-20T03:28:00.000-07:00

This is the picture Maya drew for Cicily on her birthday. She titled it Cicily glo's. When we asked her about it she said that it shows how Cicily glows in the darkness. It's so perfect. I love it.
(Note on the details: Cis is sitting in her chair and wearing a purple polka dot dress)

Happy 5th Cis!!!!!

2011-10-03T21:16:00.001-07:00

If big smiles and lots of laughs are any indication, Cicily had a GREAT 5th Birthday!!!!!

It started over the weekend with a card in the mail from Cicily's Wish Granters. Cis always has to open one piece of mail every day. So, she was giddy to have her own BIG piece of mail from her wish granters to open! Then, as you can see she was so excited to recieve a birthday card with polka dots, chickens, and music. There couldn't be a more perfect card for Cicily! Thank you Liz, Czerina, and Michael!

As soon as she woke up, it was birthday present time! Michelle gave her a polka-dot bag bursting with Dora fun!

Maya and Sophie gave Cicily their Dora presents.

This kitchen was a big hit from Mom and Dad! Cicily has been cooking delicious food for all of us all day! (Thanks Michelle for finding it on Craigslist and picking it up for us.) Oh, and the dress Cicily got to go pick out this morning. Dad talked to her about presents last night and she said dress. Mom hadn't bought a dress for her birthday this year - oops. So, we went to the store this morning, she liked choosing her own birthday dress!

Birthday party at school! I'm not sure if Sophie or Cicily loved this more. Cis wanted cookies to share with her friends at school. She was talking about it all day yesterday! You can't see it in the picture too well, but she has a cute polka-dot 5 crown on from her teachers.

When she came home from school, Tami had this BIG surprise for her. A larger than life size Minnie Mouse! Cis was stunned when she first saw her, and loves her of course! She had fun flopping and snuggling with Minnie all evening!

Grandma DeEtte came to bring a card, wish a happy birthday and give Cis a hug. Cicily was showing her she's 5. She can sign 5 and 1 the best, so this is a good year to ask Cis how old she is! Grandma can't wait to come back tomorrow night to babysit, give Cis her present, and play with all the fun new toys!

We asked Cicily what she wanted to do at night for her birthday and she wanted a Cicily's Birthday Family Night Celebration. We used her new markers from her teacher at church, Sara Willis, to make cards for Cis showing what we love about her. (Maya's idea) Cicily wanted cookies instead of cake, so we enjoyed cookies! And, we played and danced with all of her new toys.
After she was in bed, she got 2 surprise phone calls from her cousins to sing happy birthday. So we put her hearing aids back on for a beautiful Cesar "happy birthday", complete with "hot lava" of course! Then we put them back on a few minutes later for an adorable Max "happy birthday" solo. Cicily really loved both of them!
Thanks to so many people that love Cicily, she enjoyed another very happy birthday!

Wish Granters!

2011-09-29T12:53:00.001-07:00

Cicily's Wish Granters - Liz, Czerina, and Michael

Reading and playing with balloons!

This wishing stuff is so incredibly fun and exciting!! Cicily's three wish granters Liz, Czerina, and Michael came to meet her and the family last week. They came with gifts for Cicily, Maya and Sophie, balloons, pizza, and an air of excitement! I was so impressed at how they focused on Cicily, but also included her whole family. What a fun night we had! Cicily was insistent on her wish granters seeing her chickens and her bedroom and they kindly obliged. They also played with her and asked her questions about what things she likes: Dora, polka dots, Taylor Swift, animals, Minnie Mouse, etc. Then Cicily showed them her wish book, the lovely coloring book from Make-A-Wish about what she would like to wish for.

It was pretty apparent to them by the end of the night that Cicily's one true wish is:

To go to Small World at Disney World!

When they asked her about Small World her face lit up and she did a whole body "yeah" where every limb gets excited and flails. So, her wish granters told us they just have to run all the paper work and get the ok from Cis' doctor and then they'll plan a trip to Orlando for our whole family! We are beyond excited! They told us about this AMAZING village we would get to stay at called Give Kids the World: http://www.gktw.org/ You must check it out, it's beyond belief fun for wish kids and families. After the wish granters left we looked up Give Kids the World online and enjoyed looking at pictures and seeing all the awesome activities they offer. Maya was giddy and asked how much we'd have to pay for all of this. When I told her we wouldn't have to pay anything because wonderfully kind people donate their money so families can do this, she was in awe. She said, "I can't believe so many people would do that for us." I'm in awe too Maya.

Later we realized we'd also be able to go to the Wizarding World of Harry Potter at Universal Orlando. Now for the last week, multiple times a day, Maya will yell, "Harry Potter Theme Park!!!" and every single time Cicily "yells" back - she laughs, smiles, flails, and flops backwards. We had to get it on video, it's so cute and gets us all excited! I decided Cicily is mainly excited about the Harry Potter theme park because she knows it makes Maya happy. It's not like most 4 year olds that are just liking what their big sister likes; Cicily is genuinely happy to make her sister happy.

What a lovely thing for our family to be able to focus on and daydream about! Thank you Liz, Michael, and Czerina and Make-A-Wish!!!

Being Cicily's Mom has taught me - it's ok to paint a doll's toenails

2011-09-06T13:39:00.001-07:00

Things keep popping into my head lately that I've learned from being Cicily's Mom. So, I've decided to start a regular posting topic of "Being Cicily's Mom has taught me..."

I already mentioned in the last post that Cicily wanted to paint her doll's toenails. It was a little too dangerous for me at first. Defacing a doll permanently by painting her toes. Dolls toes shouldn't be painted, they're dolls, you take care of them. You don't write on walls, you don't color a doll's face, you don't paint her toes. So after all that went through my head in a quick second, I realized - who cares? It's Cicily's doll. She'd like her toes to be painted just like hers are painted. It's not going to hurt anyone. So we painted those dolls cute toes. Cicily was so proud!
Then Maya came in the bathroom and Cicily showed her the doll's toes. Maya's face registered all of my first thoughts (she's a practical, planner - kinda gal like her Mom). Maya looked semi-horrified. But then her face softened and she said, "oh, you're going to take the paint off though huh." I said, "no, we're going to leave it, isn't it cute." I explained my rational to Maya and eventually she was mostly ok with it too.
It's a good lesson for a practical girl like me to learn. I try to remember it doesn't hurt anyone to have a doll's toenails painted. It doesn't hurt anyone to use up a sheet of new stickers all in one day. It doesn't hurt a kid when they get dirty playing outside.

Cicily's dirty painted toes.
Maya took this lovely picture of Cicily's dirty feet after Cicily got to screen for artifacts on a recent archaeology dig.

Thanks to you Cis, your younger siblings will have a much more dirty, destructive, playful childhood, I think they'll thank you. :)

What it's like to know your daughter is going to die

2011-09-06T13:09:00.001-07:00

The title's a bit dramatic, but given the situation, I feel a little more dramatic than usual. I wanted to write this post because I know people are curious about what it's like - to know your daughter will die young. I thank those close friends who have already asked me what it's like, and especially thank those that can share their own stories with me.I will try my best to put it into words - the feelings, the thoughts, the actions, the changes.
My mind keeps coming back to the country song, "Live like you were dying". Knowing Cicily won't have a full, long life has, without us even realizing it, inspired us to fill her life up as much as we can with the things she loves. We haven't gone skydiving or ridden a bull named fu man chu (for those Tim McGraw fans out there). But I have, if possible, loved deeper. And done some other things too, like:
- Just after we found out (for sure) in December, I wanted to spend every minute I had playing with Cicily and making her laugh. I stopped talking to friends, stopped taking her to doctors, cancelled therapies, and started focussing on the most important things. It didn't take too long though to realize there's a reason we have friends (thanks friends for still being friendly), and that sadly those annoying insurance companies still need to be dealt with.
- In October (back when we knew her condition, but it was unconfirmed) when I took her to get her 4 year old portraits taken, I bought the big one. If it were her last portrait, I would want a big one. Now her 5 year old pictures are coming up. How many years do I buy the big one?
- In November we started to look into chickens. We should have waited until we had a back yard that should actually accomodate farm animals. But, would we have the time to wait to give Cicily her own farm? We knew she'd LOVE them, and everyday when she asks to see her chickens I'm glad we didn't wait.
- A few weeks ago I was painting Cicily's toenails and then she wanted me to paint mine. Then she picked up a doll by us and pointed to the dolls toes. She wanted to paint the doll's toes. At first I thought, dolls toes shouldn't be painted- that would deface the doll! Then I realized, what's the big deal, life is short, if Cis wants her dolls toes painted - who cares! So now we have a doll with cute red toenails.
I wish I could say knowing my daughter will die young has made me a perfect person - that I always spend time with the most important people first, that I always remember to be patient and act kindly. That I do spontaneous, fun things everyday just because you never know what will happen tomorrow. I wish I could even say that everyday I spent more time with Cicily or never lost my paitence with her. It's not exactly like all of that. Knowing Cis will die young hasn't made me perfect, but it has made me a better person I hope. And, no, I'm still not going skydiving!

First Day of School - Preschool yr. 3

2011-08-23T20:37:00.002-07:00

Cicily started preschool last week. This is her 3rd year in preschool. She was SO excited to get back to her old friends - Miss Tami (nurse), Miss Marli (teacher), Miss Sue, Miss Sarah, Miss Mary, Miss Rocio, Miss Rachel, oh and some friends her own age too! We were so excited that all of her amazing friends will be taking care of her and ensuring she has another fun, safe, and educational year in preschool. I can't say it enough, we love Cicily's teacher and nurse and all the professionals that get to work with her in school.

Home-sewn beauty: A thank you spotlight on Aunt Kristy

2011-07-25T21:05:00.005-07:00

A few months ago we got a total surprise in the mail. Maya was so excited to get something for her - she's always bummed because Cicily always gets so much mail (nothing exciting I try to tell her, mostly medical bills). My immensely talented cousin Kristy had been working on these booties for Cicily for a while, getting them just right. She sews booties for babies, and wanted to try her hand at a larger pair for Cis. She ended up making 4 adorable pairs for Cicily to wear. And, she also included Maya and Sophie and made a cute wallet for Maya, that she's "keeping all of her most special things in" and a headband for Sophie. If you had tons of time Kristy and I had tons of money, I'd keep you busy making even more bows, bags and booties for us! :)

Two years ago (wow, it's been a long time already) when Cis got her trach re-placed, my Kristy called me while I was sitting next to my fully sedated Cicily, my head flooding with all the things that having a trach back meant and Kristy told me she wanted to sew a bag for us. It was a little thing considering all we'd been through - a bag. But, it was also a huge, tender thing that made me know our Heavenly Father was watching over us and making this setback easier in simple ways. It was a silly thing I dreaded - having to lug around a suction machine and a bag with trach supplies - again. So, knowing Kristy was thinking of us and making us our own special bag was a big lift. And, this bag has lasted a full 2 years, looking and performing excellently, inspite of it being used and abused daily!

Kristy sews a lot of wonderful items. She has a blog: www.thevintageclothespin.blogspot.com and an etsy store: . You should really check them out!

We've been on Vacation

2011-07-24T22:16:00.009-07:00

We've been on vacation for 1/2 of July and it's been glorious! First we went to a cabin with Chris' fam. We went to a fish pond to let the girls experience catching a fish. They were horrified by the prospect of holding a fish and didn't care for the whole fishing thing. Sorry Uncle Adrian, I feel like I've failed.

Then mid-July we got to go to Bryce Canyon in S. Utah for a week with my fam. Beautiful scenery, perfect weather, and awesome family. Wish we could have stayed longer! Here's Cis and Sophie enjoying a river and waterfall.

We had a big family reunion. This is Cicily with her 2nd cousin, Meredin. Meredin is 5 and just loved Cicily. She was so cute, the first time we met her she just came right up to Cicily and said hi, then asked a couple questions about her (one of which I loved, "is she handicapped?") So I explained all about Cicily. Then Cis taught her some of her signs and Meredin pushed Cis in her chair all around the camp. They were legitimate friends. I love it when people treat Cicily that way. The family by beautiful Bryce Canyon.

I didn't mean to block out Cis, but she got me in a headlock hug right before the pic was taken. She's been giving the most excellent hugs lately! We all love it.

Grandpa made up this fun game with Cicily. They swatted that milk jug/ball around on the carpet for at least 1/2 hour. Cicily was laughing the whole time. She loved spending so much time with her grandparents. Playing games, going for walks, enjoying beauty, and even waking them up in the morning. Good thing we have chickens and Michelle at home, or she never would have wanted to leave!

Cicily's Song of Love

2011-06-21T10:51:00.002-07:00

Go push play on the cute picture over on the side bar. That's Cicily's very own song!!! She loves it. I love it, although I can't listen to it without getting teary-eyed.
There's a wonderful organization called Songs of Love http://www.songsoflove.org/ that writes, sings, produces, etc. songs for children with medical, physical or emotional challenges. Cicily has been so into music lately that we thought she would LOVE having her very own song all about her. Songs of Love is awesome! They had us fill out a little survey all about Cicily and then a few weeks later this song came in the mail - all about Cicily, for Cicily.
She was excited to take the picture over there so we can send it, along with a thank you card, to Lindsey Jones, the artist who wrote and sang her song.

Thank you Songs of Love!

What Cicily's been up to

2011-06-21T10:13:00.003-07:00

Mommy putting eyeshadow on Cicily. She loves the girly things - makeup, dresses, hair, pedicures. Good thing she doesn't have any trace of the diva personality to go with it.
Maya turned 7! This is the game Cicily wanted to give her.

Playing Barbies with Michelle in all kinds of different ways. Michelle is awesome at coming up with new games and ways to pretend.

We went to this super farm/petting zoo. Cis loved feeding all the animals. The first one she fed was a little donkey that ended up biting her. It didn't dissuade her from feeding the rest of them though.

Petting a camel. There was also a popular zonkey - zebra/donkey (seems kinda wrong, but kinda cool).

Gathering chicken eggs every day. Cis takes this soft basket outside so she can carry the eggs back in the house safely.

Sophie turned ONE year old! Cis is helping her open the present she gave her.

Playing in more boxes. Twin sisters.

Cis rode in another ambulance. This time it was all fun! Her nurse Michelle's husband is a firefighter. He brought this truck that's similar to an ambulance over for Cicily to check out. What a fun backstage tour experience!

Summertime! When wer're not swimming at Grandma and Grandpa's pool, we've been creating a water park in our own backyard!

Cicily has been all about dresses and pigtails lately. We just bought her this new summer dress, since she only wants to wear dresses now. This is the huge hug she gave Daddy when she went to show him her new dress and pigtails. I think she started liking dresses so much because her Daddy will always tell her how beautiful she looks and make a big deal out of her dresses.

Cis gets a wish

2011-05-23T21:36:00.003-07:00

Cicily is going to get the chance to dream big and have her wish granted through Make-A-Wish! We are all very excited about this. They sent Cis a wish book in the mail and we were coloring it and discussing wish ideas last night. Some of Cicily's favorite ideas were: being a farmer, feeding farm animals every day, meeting Mickey Mouse, having a dress to wear for each day of the week, and going to Small World. Cicily got very excited about these ideas! I guess now she gets to meet with her "wish granters" to figure out her big wish.
This wish process has been a welcome excitement for all of us. At first Maya was jealous and didn't understand why she didn't get to have her own big wish come true (to have a Nintendo 3DS, go to Hawaii, or go on a Disney cruise). My explanation of, "Make-A-Wish is something really special that people do for kids who won't live to be adults and have the chance to make their own wishes come true," was not adequate at first. After thinking about how Cicily never wants to do anything exciting without Maya, we told Maya that since she's been such an awesome big sister to Cicily, Cis will for sure want her involved in whatever she wishes for. Now Maya's on board and excited to help Cis decide on a wish. For me, it's been a nice change to have thoughts pop in and out about the thing that would make Cicily really happy; as opposed to thoughts about her funeral arrangements. A very welcome diversion. I've always thought Make-A-Wish was an amazing, unselfish program. I am in awe that people are willing to expend so many resources to making my little Cicily's wish come true.

The winner is...

2011-04-27T13:17:00.003-07:00

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

2011-04-27T13:00:00.002-07:00

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

2011-04-27T10:10:00.005-07:00

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

2011-04-11T21:30:00.005-07:00

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

2011-04-05T20:55:00.003-07:00

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

Words of Hope

2011-02-28T10:40:00.002-07:00

I was reading some scriptures the other day and I read this one that had never been particularly meaningful to me before. It's Mosiah 16:8 "But there is a resurrection, therefore the grave hath no victory and the sting of death is swallowed up in Christ." (If you're wondering where this Mosiah is, you can check this out http://www.mormon.org/book-of-mormon/)
I love how that's worded - the sting of death is swallowed up in Christ. It's exactly how I feel. People wonder how it is knowing my daughter is going to die young and I never know what to say exactly. I know I'm going to miss Cicily terribly. I know I'll be happy thinking about how she's no longer bound to her painful, ill-functioning body. But I know that her spirit, the essence of who Cicily is, will one day be reunited with her body as she is resurrected. And her resurrected body will be perfect and she will be able to tell me exactly what made her sad that one day when she was 4 years old and couldn't explain it to me. (I've imagined our long talks - Mom, what were you thinking making me use those glasses - they didn't help a bit, etc. And hopefully - Mom, thank you for making my dolls do goofy things to make me giggle, etc.)
So at times when I start to worry about how I'll miss seeing my Cicily smile and how it will sting a lot to not have her in our home, I think about that sting being swallowed up in Christ. I know Jesus Christ died and was resurrected. I know it was not an easy thing for Him to do. He did it for us. It makes me feel like I can face the not easy thing of having my Cicily gone from me, because, "the grave hath no victory...the sting of death is swallowed up in Christ" for me and for my Cicily.

Change of voice

2011-02-28T10:32:00.002-07:00

Hi, it's me - Cicily's Mom. I also go by Janalyn, but I like being known as Cicily's Mom.
When I started this blog for Cis, she was a baby. I just felt like her little story should be told. I always considered this blog to be Cicily's blog; never mine or our family's. I thought maybe when she got older she could start making her own blog entries and writing her own story. Since she likely won't be doing that, and I feel like some of my story as Cicily's Mom should be told, I'm going to talk more about myself and what it's like to be Cicily's Mom. (Some of you may wonder, doesn't she already do that? Well, I probably do more than I intended, but now I'm giving myself full-on permission :) )

Chicks!!!!!

2011-01-26T21:42:00.004-07:00

For Christmas this year Cicily, Maya and Sophie got chicks! Cicily loves animals and has been a huge fan of her cousins' chickens for a while. We decided a new pet that Cicily would love and that could give us eggs to eat wasn't such a bad idea. So the girls got 5 baby chicks Christmas morning - Brunhilda (Bruni), Freedom, Liberty (Libby), Gingerbread (Ginger), and Peach. Bruni is Cicily and Maya's favorite. She's the brown one featured in all the pictures below. The chick will just sit on Cicily's shoulder while Cicily snuggles her, it's quite surprising behavior from a bird! Now that the chicks live outside in their coop, the first request after Cis wakes up and the last request before she goes to bed (and multiple other times during the day) is to go outside to see the chicks.

Chick on the head used to be a favorite of Cicily's when they were small enough to perch on her head.
Cis with all 5

The shoulder snuggle

Swinging with Bruni

Appreciation

2011-01-26T21:36:00.004-07:00

Thank you to everyone for your thoughtful comments about Cicily's new news. We always love to hear how she has impacted someone's life. Thank you for the prayers, they always help us handle the rough days with more perspective.
Love to you all! Janalyn

I've been avoiding this - MRI results

2011-01-16T21:41:00.005-07:00

So the week before Christmas Cicily's favorite neurologist had a heart to heart with Chris and I about Cicily's MRI. Basically it doesn't look any different. There's still no white matter, which is what we expected. The Dr. showed the MRI film to 12 or so colleagues and they all agreed you can't get less than zero! She said if we're seeing a decline in Cicily's abilities, then that's the path we should expect her life to continue taking. Cicily will most likely not live into adulthood. There are no definitives with this type of brain situation. But, the doctor felt it would likely go one of two ways. Cicily will get really sick - a bad pneumonia - and her body won't have the strength or control to heal and recover. Or, her body will slowly lose more and more function. This would mean she'd gradually lose the ability to crawl (which is somewhat happening), sign (also happening), sit, hold up her head, digest food, and so on, and ultimately breathe. As the doctor put it, she'd at some point "stop being Cicily". I hate that phrase, but want to type it instead of say it so I don't cry. I can sometimes talk about her dying in person without crying, but I hate the thought of seeing her "not be Cicily". I can't imagine her living too long without being able to smile, laugh and enjoy life with us. But, there's no way to know how long or when this would all happen.
We were expecting all of this news. Chris and I had both independently thought of aspects of Cis' funeral and what it would mean to not have her around. It still sucks to hear it and discuss it all with a doctor. It's also kind of relieving to have some sense of how Cicily's life may turn out as it's been a huge cloudy mystery since the white matter discovery 2 years ago.
I think back to how I pictured her life shortly after she was born: "By the time she's 20, you'll never know all she's gone through, she'll have a 'normal' life. It's ok if she can't talk 'on time', at least she'll still walk when she's 'supposed' to." Then when she was 3: "Well, she doesn't have white matter, but she'll just take longer to talk and walk than we expected. At least she learns as fast as other 3 year olds." Now that she's the ripe old age of 4: "She's going to die, possibly slowly and painfully. At least she smiles and sincerely enjoys life (at least - for now).

best friend

2010-12-09T10:40:00.003-07:00

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

2010-11-22T10:09:00.003-07:00

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!

2010-10-28T12:51:00.003-07:00

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

2010-10-05T11:17:00.006-07:00

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!!!!

2010-10-03T21:26:00.003-07:00

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

2010-08-12T13:24:00.005-07:00

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

2010-08-03T15:08:00.002-07:00

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!

2010-07-22T12:44:00.003-07:00

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)

2010-06-30T14:58:00.004-07:00

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!

2010-06-30T14:44:00.003-07:00

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!

2010-06-13T20:19:00.003-07:00

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?

2010-05-27T13:56:00.003-07:00

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

2010-05-12T14:29:00.003-07:00

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!

2010-05-03T14:43:00.004-07:00

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

2010-03-23T15:50:00.005-07:00

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

2010-02-20T20:05:00.007-07:00

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

2010-02-02T19:07:00.006-07:00

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

2010-01-26T19:21:00.004-07:00

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

2010-01-21T10:39:00.002-07:00

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.

Cicily's blended diet recipe

2009-12-21T08:48:00.002-07:00

I've been asked many times for a sample recipe of what we feed to Cicily through her g-tube. We've been doing a blended diet (blending all normal food) for Cicily since she was a year old. Cis had a feeding therapist when she was a baby that always told me to keep her eating habits as "normal as possible". Feeding her real food just seemed like an extension of that and it was something that I just felt would be really good for her, so we do it. I've never counted calories for Cicily, because I don't count calories for my older daughter either. Some days Cicily gets more calories, some days less. What I've done is taken the FDA guidelines for a child Cicily's age and created a healthy recipe to blend and feed her. I change and increase the ingredients as she grows. When she was in the hospital in July I finally had a dietician look at her recipe and she ran the numbers and said it looked great.
Here's the recipe, this feeds Cicily for one day. As always, feel free to leave your own suggestions or questions.
1 1/2 -2 C. grains (barley, oats, rice, wheat, millet, quinoa, etc.) I do raw with 2 C. water in the Vitamix and blend for 3 or so minutes. I used to used the equivalent of already cooked grains.
2-3 servings of veggies (whatever we have around on that day)
2-3 whole fruits
2 T flaxseeds
2-3 t. olive oil, coconut oil, or any other oil
1 C milk
1 cooked egg, 1 serving of cooked meat we ate that day, or 10 almonds
1 t. salt
Sometimes I add 1/2 C plain yogurt, spices, beans, or whatever else I feel like feeding her
I first blend the grains, meat and water together for a few minutes, in the VitaMix blender, then add the milk and everything else and blend for another few minutes. With each meal I also give her 2-3 oz milk or water (to rinse out the bottle I used to measure her feeding).

My sister- the aspiring respiratory ther./nurse/doctor

2009-11-25T10:46:00.003-07:00

This is Maya and her patient Lucy. The other day Lucy was coughing and Maya calmly, but quickly ran over to grab the face mask we use to do CPT on Cicily. (CPT is when you take a mask , or cupped hand and just thump on a person's chest to clear their lungs. We frequently thump Cis' chest when she's coughing.) Maya proceeded to pick up Lucy, lay her down and begin CPT. Treatment was successful -Lucy stopped coughing.

I suppose Maya could be aspiring to be a respiratory therapist or, even better, a Mom to her own wonderful child like Cicily. We've already started wondering when we'd feel comfortable leaving Maya and Cicily alone at home. Let's see, Maya can already replace an HME, suction a trach, call 911, run a feeding pump, and perform CPT when necessary. We'll start working on trach changes. ;)

Preschool Girl

2009-11-23T14:21:00.003-07:00

First day of school

What is that smile all about?? I could not get a real smile out of her that morning. Maybe she was just too excited about school.

Last week the preschool had a carnival. Cicily got her face painted!

She always wears all of her "daytime gear" to school: hearing aids, glasses, orthotics, and trach and g-tube of course.

Cicily started preschool last month. She goes to a district-run preschool about a mile away from our house. We were pretty sure we only wanted to send her if she could have her own nurse with her in class. However, after meeting all the faculty at this preschool we felt very comfortable sending Cicily without her own nurse. There is a great nurse at school that helps 3 of the children who have trachs. She goes from classroom to classroom to make sure they're safe and don't need suctioning. Cicily's teacher is fabulous!!! She signs to Cicily, sings with the class, is very easy-going and even suctions Cicily's trach! Cicily has physical, occupational, and speech therapy at the school. I love her PT, she's always giving us new suggestions and doing new things to help Cis learn to walk. Cis' OT is one that worked with her when she was one year old, she's been a favorite OT, so we're glad to have her back! And her ST has worked a lot with kids with a hearing loss and I've been impressed with her plans so far.

I went to school with Cis the very first day to make sure everyone was comfortable with the trach and to see it all in action. Everything seemed to go well, so she's been going on her own ever since. She cried when I dropped her off for the first week, but now she goes with no problem. She's always so excited to tell her Daddy about what she did at school when he gets home. We're very glad she likes it and is gaining a lot of new knowledge, social learning, and therapy skills.

Hippotherapy

2009-11-01T21:11:00.004-07:00

What is that you may ask -as we did - some kind of therapy employing hippogriffs? It's actually therapy on a horse. Cicily does her hippotherapy with an experienced, caring physical therapist named Rachel and a patient pony named Ruby. I could explain hippotherapy, but this is a short, great explanation already written, (plus I'm really not a hippotherapy expert yet). http://www.americanequestrian.com/hippotherapy.htm It basically just makes sense in an intrinsic sort of way - you sit on a horse that moves and your brain figures out better how to move. It is more expensive than other therapies, because we have to pay the stable costs. We sort of count it as Cicily's "extra-curricular" activity for now, since we can't exactly pay for dance or singing lessons for her, so she gets horse time (which she probably loves better anyway).

Cicily LOVES seeing all the horses and petting Ruby! Enjoy some pictures of Cicily enjoying her Ruby time.

Signing "walk" to let Ruby know to get the fun started.

After each lap around the arena, Cicily gets to climb off Ruby and tickle her nose. It's definitely Cis' favorite part of the whole deal.

Telling Ruby thank you.

Mommy's favorite part of hippotherapy.

I Love You Gramps

2009-10-12T14:57:00.003-07:00

Cicily and her Great Grandpa Vern Watkins. Cicily was sitting with Gramps at her birthday party and her nurse Kelly snapped this priceless picture of Cis signing "I love you" to Gramps. Cicily has always been very fond of her Gramps. He always delights Cicily with his realistic bird calls. She smiles huge, makes her delighted sigh, and signs "bird". I don't think I've ever seen Cis sign I love you quite that well either. A truly dear picture to capture a dear relationship.

Three Years!!!

2009-10-08T20:43:00.007-07:00

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

2009-09-26T15:32:00.002-07:00

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

2009-09-24T14:58:00.004-07:00

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

2009-09-11T15:04:00.004-07:00

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!

2009-09-11T14:51:00.003-07:00

I just want Cicily to be normal

2009-08-24T08:57:00.003-07:00

"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"

2009-08-04T19:51:00.005-07:00

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.

THANK YOU!!!

2009-07-31T13:14:00.003-07:00

If you're one of Cicily's wonderful doctors, nurses, therapists, RTs, MAs, surgical schedulers, audiologists, case managers, etc. then look for one of these cards in your mailbox soon!

We've wanted to send out a special thank you like this to let all the special professionals in Cicily's life know how much we appreciate all they've done for her. The plan was to wait until she was walking, decannulated, talking, and/or eating and then to send out a "thank you - see how all your hard work has paid off" card. BUT, Cicily's life isn't like that. Her life is just hard and things don't come quickly or easily for her. BUT, Cicily just keeps smiling and enjoying her life anyway and all those professionals have helped her to do that.

We thank them and we thank all of you for your concern, love, and prayers!

Special thanks to Aunt Ondria for creating the adorable card!!

The 12 day hospital stay

2009-07-17T13:18:00.019-07:00

So after Cicily was stable, they did a chest x-ray to determine if the ET (intubation) tube was in the correct place. The x-ray showed some cloudiness in her left lung, indicating pneumonia. So Cicily was on the ventilator, intubated, and sedated for 5 full days while the pneumonia spread to the other lung and then went away. While she was intubated, she had some special visitors:

Maya could actually come visit this time as the hospital doesn't have age restrictions for visitors in the summer. Cicily has a shirt on that her cousins all signed. What a great get well card!

One of our favorite families! It'll be interesting to see if Jerome is happy or sad that Cicily has her "necklace" back.

On Tuesday July 7th (almost exactly 2 months after it was removed), Cicily had her tracheostomy re-placed. We would have liked to give Cicily a real chance to learn how to handle her secretions without a trach and without being sick. She never really was 100% healthy the whole 2 months her trach was out. However, her episodes just got too severe and her chances were running out. Now we'll have to figure out what works to thin her secretions and she'll have to have her trach capped more and figure out how to cough and breath and not get scared with it all. (Damn that lack of white matter!) It still seems that the trach will be a temporary thing in Cis' life. Chris and I are actually quite relieved that it's back. It's funny, as much fun as it was to hear Cicily's voice when she laughed, I was also happy to hear her trach laugh once again.

The day after her tracheostomy, Cicily woke up from sedation in pain and flailing wildly. She had become addicted to the drug fentanyl that had kept her sedated for the past 5 days. It's an opiate drug, like heroin. So, like a heroin addict, Cicily had to be put on a detox regimen. She was given decreasing doses of the drug methadone to get her over the addiction symptoms.

The above picture was taken the day she woke up, the only time we saw her smile for the next 4 days. It's the first time I can think of in her life when Cicily hasn't just bounced back quickly from a surgery or illness with a smile - it was disconcerting.

Maya was of course the first to get Cicily to smile again! She even got a laugh out of her. One morning we brought Cis' dog Lucy for a visit. That plus Maya won lots of smiles!

After 12 days in the hospital, Cicily was discharged. Because of the addiction and not moving for almost 2 weeks, Cicily was still unable to sit up on her own or even hold up her head. The night she came home, I ran out and bought her this chair she could lounge in and completely recover in.

Cicily has been SO happy to be home. She's been smiling almost non-stop. I think she's happy to be alive and healthy.

The Episode to end all episodes - Life and Death

2009-07-15T13:59:00.002-07:00

On Friday July 3rd at 5 am Cicily had a couple big coughs. Chris and I woke up and Chris ran into Cis' room (I walked). Chris got her out of her bed, and she had already started gasping for breath. She was having another "episode" that we've seen so frequently in the past 2 months, with each one getting more severe. Cicily hadn't had an episode for over 2 weeks, but here it was again, so we began our standard treatment. I held Cicily on her rocking chair while Chris got her albuterol breathing treatment, oxygen, and humidifier. I held all 3 of those tubes to Cis' mouth and sang her songs to calm her while Chris suctioned her mouth and throat with a 14 french catheter.
We and Cis' doctors have theorized that she has these episodes because she's only used to coughing up junk into her throat and then out the trach it comes and with no trach as a trap door, the secretions get stuck in her throat and she gets scared and begins gasping. It's almost as much of a mental panic as it is her airway being plugged up by secretions.
After a bit of the usual treatment, it was clear Cicily was not bouncing back like normal. Chris left the room to call 911. By the time he got the phone and was back in the room, Cis had stopped breathing completely. We put her on the floor and Chris started giving her breaths with the ambu bag. I felt her chest and couldn't feel her heart beating. So after a second of both of us freaking out knowing we had to start CPR, we collected ourselves and I began chest compressions with Chris giving breaths. After about 10-20 compressions I started to feel Cis' little heart start to beat under my hands. So we stopped CPR and by this time the fire department was here. The ambulance came quickly after. They proceeded to intubate Cis and attempted to give her an IV (our carpet still bears the blood stain). Then we were off to the hospital in the ambulance. The nearest hospital to us is a heart hospital for older people. That's where Cis was taken because they had to "stabilize" her before they could transfer her to her normal hospital.

Cicily stable in the PICU at her "home hospital"

Chris and I both thought Cicily wasn't going to make it past this episode. When Chris went to ask our neighbor to stay in the house with Maya before we left in the ambulance, Chris told him he thought this was it. At one point before the CPR I put my hand on Chris' arm and said it's ok. I was very calm with the idea that if it was Cicily's time to go then she'd at least be free of her ill-functioning body and she could go chase after some ducks with her great-grandmas. I'm incredibly happy that Cicily did not want to leave us though. She amazes me at how gracefully and joyfully she accepts her calling on this earth.

2009-07-08T19:30:00.002-07:00

After a horrible new "episode" on Friday, Cicily has been in the hospital and now has her trach back in. It's mostly due to her white matter issues, her "TCS airway issues" are perfectly fine. Discouraging, but she wants to live and we want her to keep making our family and others smile. The complete story will be written out at a later date.

A new detective in the Case of the Missing Myelin

2009-06-26T15:18:00.005-07:00

We asked Cicily's neurologist #4 if he could provide us with a list of neurologists who specialize in white matter issues. He kindly gave us a list of 3 doctors who research white matter (myelin). One was in Salt Lake City, one in Maryland, and one in DC. We checked into all of them and what research papers they've written. We're quite excited because they all have a strong interest in white matter diseases. We decided we'd start closest to home, and see if we could get Cicily in to see the doctor in Salt Lake City.
So in July we'll be heading up to Utah. The doctor we're going to see is an MD and PhD. He uses zebra fish to study white matter. We're hoping he will get interested enough in Cicily to study her white matter, or lack therof rather.
We've decided to stay a few extra days and make a vacation out of the trip. That means two of our last three vacations have been planned for appointments with doctors. Good thing we have doctors to see, or we'd never get a vacation!

Random Photo: I gave Cis a tangelo from our tree that wasn't going to ripen. She popped it into her mouth and thought she was so funny!

Cicily's 1st ambulance ride

2009-06-03T13:53:00.003-07:00

I guess to live 2 1/2 years with a trach and never have an ambulance ride or trip to the ER is pretty good luck. So, it's a bit of a surprise that Cicily's first ride in an ambulance to the ER came 1 month after she was decannulated.
Short story: Cicily coughed up too much junk and couldn't swallow or spit it all out, and it was blocking her airway. She wasn't getting enough air, and Chris called 911. Ride in an ambulance and 2 day stay in the hospital.
Long story: Cicily has been sick on and off (mostly on) since a few weeks pre-decannulation. She's done amazingly well during the day at coughing and swallowing her minimal secretions. However, at night or in the mornings, she coughs up lots of thick crap and can't do anything with it. (We're not sure how much this trouble swallowing has to do with her brain issues and how much is related to not eating. Unfortunately, it's probably a combination.) So last Wed night she'd been sleeping and coughing, but doing fine. Then I went in to change her diaper right before I went to bed. As soon as I put her flat on the floor and got her diaper off, she coughed and started fighting to breathe. Chris and I took turns suctioning her mouth with a Yankeur, giving her back blows (infant Heimlich), providing supplemental oxygen, taking her outside (sometimes the change calms her), and singing comforting songs. Usually these tricks work, and Cis calms down and starts to breathe normally. Tonight though she kept getting more and more scared and breathing less and less. After a few minutes (who really knows how long time passes as you watch your child turn various shades of white, purple, and blue) Chris called 911.
The fire truck arrived first. They proceeded to give her an O2 mask, ask lots of questions, hook her up to a pulse ox, and take her blood pressure. I asked about performing an emergency tracheostomy (I thought perhaps her tracheal granuloma had regrown and blocked her trachea). When the captain looked at me like I was insane, I told them to get us to the hospital immediately. (I hope I wasn't too rude, that's another thing you're not too concerned about as you watch your baby's color change.) They were concerned about getting a good blood pressure reading, but then the ambulance came and we quickly got on the gurney and headed for the hospital. In the ambulance they gave her oxygen and an albuterol treatment and that seemed to help some. In the ER the nurse (who was VERY good, by the way), suctioned Cicily's mouth with a 14 french catheter and got a TON of junk out of her throat. Then the RT set up a cool mist and oxygen mask, then gave her a steroid breathing treatment. After that she finally was with it enough to pull off her mask (she hates them). A few minutes later she was pulling away the tube I was holding up to her mouth and giving it to her Grandma Sue to use. What child wakes up in the ER after nearly dying and starts playing around and laughing with her grandma?? That would be our Cicily.
So then she spent the night in the PICU and the next day and night too. It was all very uneventful. We did get a full lesson from the RT in how to deep suction orally and they gave us a supply of 14 french catheters to take home. Our tiny 8 french catheters would be worthless in these situations. We now have an "emergency box" that we keep by her bed with anything we may need for future episodes.
A tip for parents with kids with trachs: I know there are tons of things that can happen to our kids and if we let ourselves, we could worry to the point of being incapacitated. But, we never thought we'd need to deep suction after decannulation and apparently nobody else did either. If I could do it again though, I'd definitely have someone teach us the technique and have larger catheters at home before Cicily came home without a trach. Ah the things we learn the hard way!

Decannulation Party

2009-06-03T13:19:00.000-07:00

An event 2 1/2 years in the making! We had Cicily's decannulation party a couple weeks ago. The two main events on the agenda were Cicily wearing a turtle neck and being completely submerged under water for the first time. She actually got to do both at the same time as her swimming suit was a turtle neck! We invited all our family and a couple friends to celebrate with us. Cicily really liked having her face in the water. She'd sit in her tube and dunk her face in every now and again.
I couldn't help but swim in the pool and cry as I thought of last summer swimming with Cicily with hardware protruding from her chin and all the incredible things she's endured to be able to swim and put her head in the water. It was a joyous day!!!

Cis in her decannulation party swimsuit with her Grandma Sue

What's a 3-letter word that made Cicily lose her voice?

2009-05-19T15:26:00.006-07:00

DOG

Cicily loves dogs so much, and without a trach we didn't have any more good excuses to give her sister Maya about why we couldn't get one. So, a week after decannulation, we got a puppy! The night we went to pick up the dog, Cicily squealed ALL night! Then the next day when she woke up and saw her puppy, she squealed even more. She literally used her voice more than ever and got so hoarse you could hardly hear the squeals anymore. Cicily and Maya love the puppy so much, we're glad we gave in! Her name is Lucy and she's a Shih tzu. We're hoping she will be a good comforting buddy for Cis when she has surgeries when she's older.

Trach Free

2009-05-03T15:02:00.006-07:00

A playful Cis - a few hours post decannulation

Wow, I've been thinking about writing this post for 2 years! Cicily was decannulated (trach out) yesterday May 2nd. A good day!!! She was in the PICU Friday night with her trach capped (we'd also capped at home for a few days during the day). Saturday morning Dr. Mancuso came into her room and I (Mom) got to do the honors of pulling out her trach for the last time. It was glorious to not have to put a new trach back in and strangle her while I tightened the tie. Cicily didn't even flinch or anything as she went from using her trach to breathing entirely out of her nose and mouth. She was watching all the medical personnel in her room like a hawk, making sure they weren't about to pounce on her I think. The rest of the day Cis was happy, especially when we'd ask where her trach is and she'd reach up to put her finger in her trach tie and it wasn't there! She's made the transition much better than I thought she would. The first 5 or so times she coughed she'd cry a bit, but then she got used to it. I expected to have a few days of her being out of sorts with her brand new breathing pattern, so she's pleasantly surprised me. The trach stoma (opening into her neck where the trach went) was actually mostly closed up after only 2 hours of the trach being out. Dr. Mancuso expected it would close quickly because her trach size has always been so small (3.0 neo) and she just had surgery done on it a month ago.

Last night before I left the hospital and let Chris take the night shift, Cicily was breathing so rattly and I wanted to suction her so bad! It was a weird feeling to hear her needing to cough or be suctioned and not be able to do anything about it. She had a great night though and didn't have any major oxygen desaturations. She does still cough and cry when she sleeps, but that's the only time the change seems to bother her.

Right now I'm listening to her voice as she cries herself to sleep - what a glorious sound! Yesterday she was laying on me trying to take a nap in the hospital and had been crying. As she settled in to sleep, she started making those sobbing hiccupy noises like, "huhuhu " and I could hear them!!! And then she started making sleep-talk sounds as she drifted off to sleep and I layed there and cried happy tears.

For those who are concerned about the aesthetics of Cicily's neck, sometime in the next few years Dr. Mancuso will revise her trach scar to leave a nice neat horizontal line on her neck that can barely be seen.

Mom untying Cicily's trach tie for the last time. Cis was still in her jammies for the big event.

And it's out!!! Look at that bare neck! It's so kissable.

The only picture we have of her trach stoma. It closed so quickly! A thorough, unobstructed neck washing for the first time.

"Yeah"

2009-04-20T13:19:00.005-07:00

"Yeah" - It's Cicily's favorite word. It's the only word she consistently says all the time, and never signs. She loves to say, "yeah". Whenever she's asked if she wants to play with something, go somewhere, she usually answers with a, "yeah". If she's asked if she wants some food, most of the time there is an odd absence of her standard happy, "yeah" and we have to say, "you can sign 'no' Cis".
Chris commented a few weeks ago that Cicily's yeah is a great demonstration of her personality. Most 2 year olds can't get enough of the word no, and here's our sweetie living it up being a "yeah" girl. She's pretty much interested in trying anything new and she's happy almost all the time (exceptions are when she's in pain, when she's told no, and when Maya cries).
I recently pulled out all of Maya's old clothes that will fit Cicily for the coming spring, summer, and fall. It was a difficult thing for me to see all the cute outfits Maya wore at 2 years old and remember how when she wore these clothes she could run, speak in paragrahps, count to 10 in English and Spanish, knew what all the letters said, etc. I had to say a prayer because I wanted my sad, bitter feelings knowing those things may be a few years off for Cicily to go away. I did feel better and realized that both Maya and Cicily will get to the same destination, they're just on different paths. And I'm happy to have 2 girls on such different paths. I told Chris about it when he came home and he reminded me of what a friend also told me recently. -Cicily is an extremely happy girl. She doesn't care much about all she can't do yet. She tries so hard, and does SO well with what she has. When all is said and done, what more does a parent want than to know that their children are happy? I love our happy girl that makes so many people happy and is always ready with a willing, "yeah".

Outlined path to living trach-free

2009-04-13T14:58:00.002-07:00

Problem #1. A jaw that is too small
Fix - 3 month jaw distraction surgery

2. A granuloma grows in the trachea
Fix - surgery to excise the granuloma

3. Granuloma surgery is cancelled numerous times
Fix -reschedule and be patient

4. Infection inhibits granuloma surgery from being completed
Fix - reschedule, wait, antibiotics like crazy

5. A hole develops in trachea from granuloma surgery
Fix - wait 10-14 days for hole to heal

*new 6. Contracts pneumonia 10 days post-op
Fix - hospital stay with IV antibiotics, home antibiotics for 2 weeks and then cap again
Seriously, now it just feels like a comedy of errors or something like that! I am feeling more patient now though.

So Cicily's tracheal scar tissue removal surgery went well. Dr. Mancuso excised all the granuloma and stitched her little neck back up. Then she went to the PICU and her trach was capped for 24 hours. During the 24 hours of capping she was breathing EXCELLENTLY!!! Her oxygen saturations were completely normal while she was sleeping, eating, playing, everything.

There was a minor snag in the plan however. There is a leak in Cicily's trachea from surgery. When her trach was capped and there was more pressure to get air from her lungs to her nose/mouth, the air would leak out of the hole in her trachea and fill up her cheeks. She looked like a swollen balloon! So we took off the cap, swelling went down and Cicily came home from the hospital. Now we have to wait 10-14 days to re-cap and make sure she doesn't become a balloon again, and then we can pull the trach.

Mom's note: I'm very excited about Cicily breathing so well with her trach plugged. It's more than I expected from her at 2 years old. I can't describe the thrilling feeling knowing she could start to cry loudly, talk better, splash in the bathtub, not have to cough all the time. . . .
I'm also freaked out about not being able to suction the stuff she coughs up, hearing her breath differently, and other things. I don't know how to describe what a mixture of emotions it is.
When Cicily was in the hospital with her trach plugged, we made plans Tuesday night to pull out her trach Wed morning. Chris stayed with her Tues night and I went home to sleep. I'm in bed, almost out when the phone rings and Chris tells me it's not going to happen Wed. morning. I was tired, angry, sad. We have a plan in place now for decannulation and I feel good about it. I do feel like it will happen soon most of the time. Sometimes though, I feel like there have been so many curve-balls thrown that I don't know what to expect next. I try to focus on being grateful that her jaw distraction went so well and that she is capable of breathing without her trach now.

Fun times before and after surgery

2009-04-04T21:28:00.005-07:00

Mom and Cicily playing in pre-op. They gave us the toy room this time around. Cicily was well entertained for the 2 hour or so wait!
Dad and Cicily driving around the pre-op floor. These cars are a staple of the pre-surgery routine. Cicily loves doing her rounds in her car!

Later that night, both of Cicily's Grandmas and Grandpas came to visit her in the PICU. She was SO excited to see them, it really cheered her up! And they even brought presents to keep her entertained during her hospital stay.

Here she is playing the pillow game made up by Grandmas and Cicily! Grandmas make everything better!!

Grandpa Norm and Cis playing away!
Happy girl with her Grandma DeEtte!

Surgery #9

2009-03-28T20:04:00.003-07:00

Cicily is scheduled for an excision of granuloma and a spinal tap on Monday 30th. Dr. Mancuso will flip out a little ball of scar tissue in her trachea and cut it out, then Dr. Black (anesthesiologist) will perform a spinal tap to see if anything shows up to solve the mobility mystery. Sounds easy enough - we'll see. Then the optimistic plan if all goes perfectly is for Cis to stay in the PICU for 3 days capping and pulling out her trach and she'll come home trachless. I'm cautious as this trach process has not gone anywhere near perfectly for the last 5 months and I'm tired of getting my hopes up. Prayers, as always are greatly appreciated and are always helpful.

Sporting Orthotics (not braces)

2009-03-20T20:23:00.003-07:00

Cicily is finally (after waiting 2 months for insurance) wearing orthotics on her legs to help her stability. They are technically AFOs, ankle foot orthotics. Maya may correct you as she did her aunt if you try to call them braces. Are you thinking what I think everyday when I put them on, "how much more gear can you put on a little body??" The plus side - she does get to wear expensive skater shoes that I'm sure someone thinks are cool.

Cicily is not a fan of the AFOs. She hasn't learned how to maneuver and crawl in them yet, so they actually limit her mobility at this point. I'm sure she'll get it sometime, I just hope it's soon! They do really help her gait though when we hold her hands and she walks. They also help her legs stay at a better angle when she stands at the couch and make her more stable.

Don't worry, the walking equipment plans aren't over yet. In addition to AFOs she may also get to sport a spandex compression suit to help her stability, and not just an old-lady walker, but a super walker called a gait trainer! Of course none of it sounds like a great time to me, but if it is a step in her gaining the ability to walk, I'm for it. Hell, if it'd help, I'd put her in a bubble of pickle juice all day!!!

White Matter - why it matters

2009-03-14T13:59:00.003-07:00

So we had 2 more neurology appointments this week and found out a little more info. Apparently Cicily has no white matter. I asked the doctor how she's able to do anything at all without any white matter and he basically said what they see on the MRI doesn't really add up with what Cicily is doing (average mental capabilities, crawling, signing, etc.). The other neurologist said that newborns can't do anything but flail around and cry because they don't have any white matter in their brains. So basically Cis should act like a newborn; but she doesn't?!? We're of course, not sure why or what this means, but we'll gladly accept it.
It is also clear that Cicily never developed myelination. Her status can't really deteriorate, because as Chris put it, you can't get any worse than zero!
I also wanted to make clear that hypomyelination does not occur with Treacher Collins Syndrome - ever (that anyone knows about). However, we've always been skeptical that Cis has TCS as her genetic tests come back without the TCS gene change and her facial appearance is slightly different from classic TCS. The 3 geneticists we've seen feel TCS is still the best fit for her though, and we agree. I've wondered if Cicily's body may have some protein issues that affect both her TCS characteristics and her hypomyelination, as they both can be caused by proteins not working correctly. We're still doing the spinal tap on the 30th and the neuro-genetics docs are getting back to us on what tests they want to do - genetic, metabolic, fatty acid chains were mentioned.
We are very glad to be working with good neurologists and a geneticist who all seem to be very intrigued by Cis' mysterious, unheard of combination of characteristics. So far they are all doing their research to try and solve the puzzle. We hope they continue to be interested! Chris hopes Cis makes it into some medical journals as "patient A".

Why is Cicily not walking?

2009-02-18T22:08:00.003-07:00

We may have found part of the answer to why Cicily is so "wobbly" and has irregular eye movements (nystagmus). Cicily had a 2nd MRI of her brain last week which showed she has hypomyelination of white matter - it's the coating on the brain which helps get signals to the places they need to go. It's developed between 0-3 years old. So in Cicily's first MRI at 1 year old, the lack of white matter wasn't very significant, but now at 28 months old, it was very notable.
We still do not know why she is so deficient in white matter. Apparently it happens with certain genetic diseases or metabolic disorders. One of her neurologists has ordered a spinal tap to test her spinal fluid for various metabolic disorders and other cool, unusual things. So, we're anxiously awaiting the spinal tap and hoping it provides further answers. We're especially hoping the final diagnosis is treatable.
We'll continue to work with Cicily's 2nd and 3rd neurologists and see a 4th soon as they all seem to have different areas of expertise and hopefully together they can figure out our adorable, enigmatic little lady.
I was at first very nervous and upset about this new finding as it's affects can be pretty devastating. I actually feel good about it now though and have faith that in some way the many blessings Cicily has received will be realized. As I said before she was born, she'll grow up and be just fine, I just worry about what she'll have to go through to be fine. (I didn't have a tiny inkling of how much she would have to go through.)

HAPPY VALENTINE'S DAY!!!

2009-02-14T11:00:00.003-07:00

Cicily got a box of chocolates for Valentines today. Chris and I were outside for 3 mins. discussing where to plant our new passion fruit vine and walked back in the house to see Cicily in the midst of smashed chocolates all over the carpet and herself! She thought she was so cool, and so did we!!!

Going Bilateral

2009-02-13T19:44:00.004-07:00

Cicily got her new BAHA last week!!! She's now the proud wearer of two hearing aids on her headband- one on each side. We've been working on getting this additional BAHA since last May, so we're very excited!
Theoretically this gives her a higher hearing threshold and some directional hearing. All I know is now she can hear me when I'm suctioning her trach and when I whisper to her at church. In fact, Cicily hears better than I do now! At her hearing test this past Tuesday she heard a very low tone that I didn't even hear. (So, good that Cis hears SO well, and kinda bad that I hear less than my girl with a hearing loss!) :)

Jaw Distraction Before & Afters

2009-01-30T14:03:00.012-07:00

I realize it's a little late, but we now have pictures to compare Cicily's jaw from before her jaw distraction surgeries, to after her jaw distraction. I like to use her trach vent as a "yardstick". The difference is truly amazing! She has a much bigger jaw. She also has much more hair! One grew easily and naturally; and one grew with the incredible expertise of doctors, and care of Mom, Dad, Grandma, family and friends.
Before pics were taken July 2008
After pics were taken Jan 2009

2 year old portraits

2009-01-26T12:48:00.006-07:00

Cicily's "don't tell me no" or "I'm not a fan of whatever you're doing" face

Happy/silly face

Thanks for more great pics Grandpa!

A little trach humor

2009-01-17T15:19:00.004-07:00

I put the Passy-Muir valve (talking valve) on Cicily's trach today and as always, she started to babble and make tons of loud noises that we're not too used to hearing. Maya says to me, "Mom, you're going to have to turn that thing down for church tomorrow."

This makes me happy

2009-01-16T08:55:00.002-07:00

It's Snow Fun!

2008-12-31T14:31:00.006-07:00

Yesterday we traveled up to play in the snow. It was a 6 hour round-trip car ride for precisely 1 hour of snow fun! It was very worth it though, because Maya asked to go again soon when we got home and Cicily actually said, "more" whenever she got done sledding down a hill. A new verbal word! We've always suspected she'd be our little rollercoaster lover!

Maya wanted to build 2 snowmen - one for her and one for Cis so they could hold hands. So Chris built these beauties in likeness of our girls, and they're holding hands of course! It was quite a fun hour!! We're so glad we got to drive right out of the snow and back home though.

Words we never thought we'd hear

2008-12-09T20:00:00.005-07:00

Cicily had her laryngoscopy yesterday. She came out of anesthesia very well (we're attributing that to a new trick - the drug fentanyl). I was surprised when I went to recovery to see her and she had a much larger sized trach in place. I just thought, I guess her airway is still small and we'll have to try a distraction again sooner rather than later. Surprisingly, I wasn't too horrified at the thought, just pretty calm. Then Dr. Mancuso came and explained how surgery went. The granuloma (scar tissue in her trachea) was growing on a curve and with the curve of her trachea he did not want to risk cutting it with a laser and cutting through the trachea. So in January or February, after a round of antibiotics, he will do another excision of granuloma, but this time do it the old fashioned way with a scalpel. He was apologetic that he couldn't get it done with the laser, but we didn't care at all because he then gave us some GREAT news.

Her airway has improved remarkably. Dr. Mancuso said it was a typical airway. I was in complete shock! I honestly always thought she'd have a small airway no matter how many distractions we did. I pressed him on it further and he said an intubation would be no more difficult on Cicily than on any typical pediatric patient.

I cried on and off all day long. Happy tears of course! My baby girl shouldn't have to struggle to breath anymore! All the prayers and the hard work of her jaw distraction have worked in a most impressive way.

After the granuloma excision surgery in Jan or Feb, Cis will have the decannulation study done to see if she can breath without her trach in all situations.

Cis and Maya on a happy afternoon a couple weeks ago.

Mepilex AG - great product, amazing company!

2008-11-17T14:46:00.005-07:00

I've talked about all the nice people we've been fortunate to meet since Cicily was born, and now I have to share the wonderfully nice companies we've been fortunate to link up with.

We just recieved a generous supply of Mepilex AG samples from the Molnlycke Health Care company. The VP of marketing for the company found the blog post about how well Mepilex has worked for Cicily's g-tube site and he contacted me. I was in tears when I read his message, being so in awe and grateful that people care so much about my Cicily. Now I don't have to worry about the insurance company telling us one day that she's had enough Mepilex and they won't cover it anymore!

We also want to say thank you to Southwest Airlines. They have a voucher program for medical needs. I applied for tickets to fly to San Francisco to meet with the ear doctors and they gave us vouchers for Cicily's ticket and part of mine. I (definitely) fly SWA!!

As I've mentioned before, Cranial Technologies provided Cicily's helmet that she wore post- jaw distraction.

It's a wonder for me to be Cicily's Mom and see so many people take an interest in her well-being and be touched by her lively spirit.

Next surgery

2008-11-06T09:09:00.012-07:00

Rescheduled again for Mon. Dec. 8th. This time due to hospital PICU space. (third time's the charm I hope!)

Rescheduled for Mon. Dec. 1st.

Nevermind - This surgery did not happen today. Insurance issues are mostly to blame. Hopefully we can reschedule it for next Mon???

Cicily will go in for surgery on November 17th to remove a granuloma that has grown in her trachea. A granuloma is a little ball of scar tissue. In this case, it's caused by the trach irritating the tissue around it and Dr. Mancuso will simply cut and cauterize it right off. He said it's quite straight forward. Dr. Mancuso will also perform another laryngoscopy and then we'll proceed one of 3 ways:
1. Cicily's airway will appear adequate and she will have her trach capped in the PICU overnight to see how she tolerates breathing without a trach in all different circumstances.
2 . Cicily's airway will still appear too small from the laryngoscopy and her trach will still be necessary and we'll come home.
3. Cicily's tonsils will be removed to create a larger airway (and get them out of the way so they cannot cause future trouble) and he'll see that her airway is adequate enough to cap her trach for a decannulation trial at a later date when she's recovered from her tonsilectomy (I'm assuming January).
We're hoping for scenario #3, eventhough it means she'd still have her trach until January at the soonest and till she's much older at the latest. I'm nervous about Cicily transitioning from a trach to no trach during the sick winter months anyway. I will update on the 17th or 19th!

Microtia Conference

2008-10-27T15:13:00.002-07:00

Now to discuss the whole reason we were in California - the Microtia/Atresia Conference!
Saturday Chris and I went to Palo Alto to hear presentations by the very best doctors specializing in microtia and atresia. Dr. Roberson talked about creating ear canals (atresia repair), which we found out Cicily is NOT a candidate for and we are not too sad about. Drs Reinisch and Lewin talked about Medpor ear reconstruction. Dr. Brent presented on rib graft ear reconstruction. It was all amazingly informative and impressive to hear and see what they can do! The major thing Chris and I both determined was that all of these procedures are very complex and we only want one of these doctors who do these procedures weekly to be working on Cicily.
Sunday we had patient appointments with each doctor where Cicily was able to come and we could ask specific questions. We saw all the doctors and were impressed with them all professionally and personally. After it was all over, we've decided either the Medpor ear reconstruction or prosthetic ears (not presented at this conference) would be our choice.
Medpor - For medpor ears, the surgeon takes a porous polyethylene implant shaped like an ear and places a membrane and skin grafts from the patients' head on top of the implant. The result is an ear that is shaped like an average ear and sticks out from the head like an average ear. The medpor ear can move when pulled on and the live skin can be moved around on the implant just like a typical ear. This surgical method requires one surgery for the right side, one for the left and possibly a third revision surgery to touch up any little areas. What's the downside then you wonder? While the medpor ears look amazingly good, they still do not have the exact appearance of a natural ear with all it's intricate folds and curves. I have pictures of some of these ears in a powerpoint format, I guess you can let me know if you'd like to see it and I can email you.
Prosthetic - For prosthetic ears, you have an anaplastologist take an ear mold (of Mom's or Maya's ear in this case) and create a latex ear using that mold. This ear can be painted to perfectly match the person's head. It is attached to the head using glue, implanted magnets or clips. This ear looks absolutely perfectly like a natural ear. The downside you ask? The ears last 3-5 years and then a new one must be made, the color doesn't "tan", and you have to take them off and put them on each day. This site has excellent pictures http://www.prosthesis.com/ear_base.htm

We would probably have either of these options done when Cicily is around 4-5. Both methods are rather costly and insurance typically does not pay for much, if any of the cost. I'd love to hear what all of you reading would prefer if it were your little ears in question, so please vote in the poll on the sidebar! Thanks

laundry & scar tips

2008-10-21T12:37:00.000-07:00

Along with all the detailed new medical knowledge I've acquired being Cicily's Mom, I've also learned some useful everyday tips I thought I'd share.

#1 Laundry Blood Tip
We've had a lot of blood on clothes around our house in the past couple months, but not a single blood stain! Here's the secret: salt. Pour it directly onto fresh blood or two day old blood and soak it in cold water, wash the clothing, and blood will be gone. We actually had a salt solution in our washing machine every day during the month of July.

#2 Scar Tip
Growing up I always put vitamin E on my scars to make them dissappear. Dr. Singh also recommended this practice and added massaging the scar to the regimen. I bought a bottle of vitamin E capsules and 3-4 times a day I poke one with a pin and massage a little into Cicily's jd scars. We'll see if it's just as magic as the salt in making things dissappear. :)

Meeting Friends

2008-10-14T21:51:00.009-07:00

Good Friends (at least their Moms hope so!) - Faith and Cicily

Faith is one week older than Cicily, lives in Colorado and has Goldenhar Syndrome which is very similar to TCS. Faith also has a blog http://kargoll.blogspot.com/ It was so cute when they met Cicily smiled so huge at Faith and Faith gave Cicily a hug!

On Saturday night after the microtia conference, we went to a pizza party for all the families at the conference. I finally got to meet 3 Moms and their children that I've talked with on the Treacher Collins Syndrome Yahoo group. It was so great - like meeting instant long lost best friends! All 3 children were born within a few months of Cicily and have such similar issues. It was awesome to talk trachs, BAHAs, jaw distractions, food aversions, etc. and be completely understood. Hopefully we can continue to meet up as our kids grow.

Mom (Janalyn), Cicily, Faith, Mom (Robin)

Jacob, Jana, Tyler (twin brothers and their Mom), Teresa, Deena (Teresa's Mom), Cicily, Faith

Robin, Faith, Janalyn, Cicily, Aunt Dorothea, Yasmin

San Francisco

2008-10-14T21:29:00.005-07:00

Our family took a trip to San Francisco, California last weekend. There was a microtia/aural atresia conference in Palo Alto, CA that we went to on Sat. and Sun. (more on that later) so we decided it would be a great idea to go a few days early and see San Francisco. It was Cicily's first time on a plane and she did great. We enjoyed riding in the cable cars, touring the Boudin sourdough bread factory, Ghirardelli Square, Fisherman's Wharf, Chinatown, the beach, etc. We stayed in a really nice hotel next to the opera house that was tall and skinny just like every house in the city! Grandma DeEtte came with us to help with Cicily and made the trip even more fun -thanks Grandma!

Happy 2nd Birthday!!!

2008-10-06T20:22:00.008-07:00

I'm a big 2 year old girl!

Cicily had a good birthday inspite of having surgery 4 days earlier. She had a shared birthday cake with Grandpa Courtney the night before and on her actual birthday we went to the zoo with her cousins, played, and opened presents.

Maya, Birthday Girl, and Mom at the Zoo

Maya and I wrapped all of Cicily's presents in tissue paper this year, and she did a great job opening them all up.