Delight in a somersault

Last night Sophie figured out what happens if she puts her head on the ground and pushes off with her feet - a somersault!  We were all proud of her athletic prowess and cheered for her.  Then Sophie wanted "Maya's turn" and then "Daddy's turn" and they obliged with a somersault of their own.  Then it was "Cissy's turn" and daddy lifted her body and rolled her over.  After a few more minutes of somersaults I look at Cis and see her putting her head down on the carpet and painstakingly pushing along.  It's kinda how she looks when she tumbles face first so I was concerned at first.  Then she pushed enough to flip herself over onto her side.  Cicily did a somersault!!!  She laid there on her back laughing her little head off!  We all cheered and cheered for her!  Then she got up on her stomach and tried again.  She became quite proficient at her modified side somersault.  It's quite a bit of work for her - get herself on her tummy, get her legs in a frog position, get her hands in an ok spot, and then spend a bit of time trying to get her muscles to all work together to push herself over her shoulder and onto her side and back.  She was in love with this new trick she could make her body do though.  Cicily did somersaults with her sisters for quite a while last night.  We all had a blast somersaulting and cheering and laughing. 
And today I appreciate even more all the things my body can do so effortlessly.

trach ties

I'm always on the lookout for better medical equipment for Cicily.  We've been using these trach ties for about a year and love them!!!  They're from the same great company Neotech that makes her little suckers for tip suctioning. 
You can order samples to make sure you have the right size and to see if they work for you.  The company is very nice and great to work with.  We like them because they are comfortable, secure, reusable, quick-drying, cute and they never smell bad.  We use each strap for a total of about 6 weeks with changing and washing in between.
Downside is we have to order them separately from her regular monthly medical supply order.  But they're worth it!

Basically a vegan

About 2 years ago Cis started throwing up after she had eaten, usually only when she was sick.  I experimented with her food a little and found she seemed better without meat so we stopped giving her meat.  She did better for quite a while and then started throwing up again.  We went to her g-tube dr. to rule out that issue and then to her GI dr.  She ran a bunch of food allergy tests and they all came back normal (shocker!).  But she said she could still have a sensitivity to milk.  So we tried going sans-milk and no more throwing up!  Apparently her body can't digest animal products anymore. 
So for the past 6 months or more Cicily has been eating a vegan diet.  She gets her usual mixed grains, veggies, fruit, flaxseed, oil, and salt.  But now she also gets almonds and beans in place of meat and milk.  I do toss in an egg from her own chickens now and again and she seems to digest that alright.
Now not only is Cicily a healthy eater, she's an animal and environmentally friendly eater as well.   

Letter for Give Kids the World

Give Kids the World contacted us last week and asked us if we'd be willing to write a short letter for a book they're compiling for their high-level donors.  We said we'd LOVE to help!!  I've wanted to write on here about how much GKTW has meant to our family, so I'll just post our letter. 

"I can't believe so many people would do this for us!"  We had just found out Cicily's wish would be granted and that our whole family would be staying at Give Kids the World.  We gathered around the computer and were giddy with excitement looking at all the magic GKTW has to offer.  Cicily's big sister Maya asked how much this would all cost us and when she heard it was free, she was in awe.  "I can't believe so many people would do this for us!" Maya said. 
Our week at Give Kids the World was even more than we expected.  Maya, Cicily and Sophie  loved walking out of our villa in the morning and playing on a dream of a playground, going horseback riding, or having a turn on the carousel.  While we were at the amusement parks they talked about the amazing activities GKTW had planned for us that night. 
For our family GKTW is a little slice of heaven.  A place where our family could all be together to relax, laugh, play and make memories.  We won't always have our Cicily with us, but we'll always have the joyful memories of our time with her at GKTW.  We offer our heartfelt gratitude to all the many people who would do this for us! 
With love,
Chris & Janalyn
Maya (7), Cicily (5), Sophie (1)

The letter doesn't really discuss one of the most important things we love about GKTW though.  The kind loving feeling that permeates every part of that village.  It comes from all the "angel" volunteers.  Every single one of them was kind and caring to our whole family.  We never felt like we were just one more family.  It's amazing to us that GKTW hosts families each week of the year, but they make each one feel special and loved.  We were so impressed with the volunteers from all walks of life: retirees, high school students, college sorority sisters, Disney employees, and other local residents. 
Cicily's wish trip was an experience we could never buy or reproduce.  We're so happy to be able to help GKTW in this small way by being part of their book.

Cicily's Thank Yous

We wanted a way to say thank you to all the amazing people who helped with Cicily's wish.  Thinking how much Cicily likes to give gifts, we thought about a card she could hand out to people who help her on her wish trip.  I asked Aunt Ondria if she could use her design skills and create a card.  She did a perfect job!  Cicily (and Maya) really loved giving these little cards to people who helped us during Cicily's trip.  We only wish we had given more of them out!  We left a stack of them at GKTW hoping they could put them in their volunteer room for any of their "angels" that we missed. 
Cicily also framed larger ones and gave them to her wish granters. 
Just a very small token of our HUGE appreciation for everyone involved in Cicily's wish!

Give Kids the World - more pictures

Give Kids the World had professional photographer volunteers at every one of their major events.  At the end of our stay they gave us a CD with all of the great pictures on it.  Like we said, they really think of everything!  Here are some of the pictures from the GKTW CD.

When asked what her favorite part of Cis' wish trip was, Maya usually says, "All of it!"  But if she has to choose, her favorite part was going to the GKTW activities and getting ice cream every single night.  On the second night Maya discovered she loved cookies and cream shakes and that's what she had every night after.  Yes, we have had cookies and cream shakes since we've been home! 

 This was Santa on our first night.  The kindest Santa we've ever met.  He even gave us suggestions on how to get Cis to be the most comfortable on his lap. 

 Maya with the mayor of GKTW Mayor Clayton and his wife Ms. Merry.  They're all dressed up for Pirate and Princess night.

This was a favorite little spot for Sophie and Cicily.  The slide made a magical noise whenever Soph slid down and these boxes also made noises and were just the right height for Cis to open and close.  

Mickey and Minnie take lots of time with the kids at GKTW.  All the girls got one on one time with Mickey and Minnie.  They also get to sign whatever you like at GKTW.  Since each of the girls had a Minnie shirt, we asked them both to sign them all. 

This shot was taken at home a few weeks after we got home.  All 3 girls in their Minnie shirts signed by Mickey and Minnie Mouse.

Cis was so proud that Minnie noticed her Minnie Mouse dress!  She was also a little star struck.  Minnie took time to make her smile though!

So sweet.

Sophie ran up to most of the characters for a big hug.

The cowboy hats the girls got after their horseback rides.  They play with these hats at home now all the time!  We love how a horseback ride isn't enough at GKTW, gotta have the hat to take home to keep the memory alive! 

Cis loving her ride.  She really was proud to teach her sisters how to ride!

Cowgirl Maya learning how to rope on horseback!

One of the nights a bunch of volunteers brought their dogs to the village.  Cicily loved them of course!  She pet every single one and got to give this one some treats. 

Up close picture of Cicily's star that lives at Give Kids the World.  Whenever we read our GKTW book from the trip, she always points out the tower where her star is. 

More Wish trip pictures - Disney World

 Disney World offers a free photopass CD to GKTW families.  You can get all the photopass photos they take of your family at the parks on it ($100 value).  Just another way Disney and GKTW go above and beyond to make a child's wish trip magical and memorable.

 The girls saw so many characters, they almost filled up their autograph books!  They like looking at them and remembering.

 Our girls were a perfect age to all get excited about seeing these guys in real life that they've read about and seen on tv. 

 Mine and Cicily's favorite princess - Belle.  I didn't know Belle was Cis' favorite until this trip.  Right before we went to this castle to meet Belle, Cis was emphatic about buying a Belle doll play set.  I guess we both admire a girl who's smart and wants some substance to her prince. 

 I've always thought Cis looks like Snow White. 

 Aladdin and Jasmin joked with us about being from a desert like them.  We liked how all the characters stay so in character!

 In front of the Animal Kingdom's Tree of Life.  It has thousands of animals carved into it.  Maya and I were trying to see how many we could spot.  We didn't make it to thousands.

Thinking about cousin Mikey with a special Mickey balloon.  It flashed different colors at night.  We took it around the park for the afternoon and then as we were leaving we let it go, lighting up into the sky.  Maya said something about how she was glad we got a lighted balloon so Mikey could see it coming.

Chris thought it would be fun to get one last picture on our last day.  I thought it would be funny because we'd all look tired and worn out.  But,  I think you can tell we all just had an amazingly fun week and were not tired of it at all! 

This trip was like a little slice of heaven for us.  Being together with our family and just enjoying each other all day for a whole week without all the usual worries.  Oh yeah, and having non-stop FUN all day long!!!