Update #2

Hi again,

Sheridan came home late this afternoon.  She is very happy to be in her own house and sleeping in her own bed tonight.  She couldn't wait to get home to her brothers.  Sam was waiting for her with her things all set up on the couch.  He watched TV with her and offered to do anything she needed or wanted.  He was so happy to have her home with him and was very reassured to see her.  He worries about her a lot when they aren't together and it was a little hard for him to picture what this surgery would be like.

Her throat is still very sore but we are trying to stay ahead of the pain.  She tried a very thin milk shake (pediasure and a scoop of ice cream) tonight and she seemed to like it.  We are stocked up on Popsicles as well to get through the first few days.  She is amazing!

Quick Update

Sheridan is napping so we wanted to give a quick update.  Her surgery went well this morning.  She has been napping on and off all day.  We are relieved that she is comfortable enough to sleep because we had been warned by her doc that the first 48 hrs could be pretty rough.  She is super tough though and has even had some sips of water and apple juice!  Her doc was very impressed when he came by to see her this afternoon.  She has also been out of bed and watched some of a movie in the recliner.  We will update again tomorrow, but say a prayer for a quiet night for her so she can rest and feel better tomorrow.  There is a chance he will send us home tomorrow but most likely Friday, it all depends on her and she is ahead of where he expected her to be right now -- cause she is awesome!  Thank you for all your prayers and texts and messages!  We love you all!!! 

Where we have been...

Sheridan has another surgery coming up this week...and several times over the last week I have been thinking about all that she has been through and how amazing she is.  I came across this quote:

YOU SHINE!  Like the brightest star! 

I immediately thought of her because she always shines, no matter what she is up against.  She is amazing!!!

We often keep our focus on what's in front of us.  It keeps us moving forward, it helps keep us from getting weighed down by our circumstances.  We also choose to focus on all the good all around us, because there is always good. 

When we look back we do see all the things that were hard, but what shines brighter than the hard times are the memories, smiles and sweet faces of Sheridan, Sam and Rory.  Our family and friends have been the most amazing support system for us over the years and we want to say thank you for that again, we could never thank you all enough. 

SO...where have we been?  We have been in NICUs and ERs and hospital rooms, in ORs and waiting rooms.  We have been in traffic, in doctor's offices, getting "just one stick" and then getting stickers and lollypops and prizes from the prize box.  We have been in ambulances, up all night, in an MRI machine, getting x-rays and infusions.  We have lived out of a hospital room and with fever protocols.  We have been discharged from the hospital only to return hours after we arrived home.  We have been through 3 open heart surgeries, a cardiac catheterization and seven other surgeries--the 8th is on Wednesday.  BUT, we have also had faith.  We have been to the park, to school, to work and to the beach.  We have played with friends, visited family and eaten LOTS of good food.  We have gone on an AMAZING Wish Trip to Disney World.  We have built forts and watched movies, gone sledding and made hot chocolate.  We have  gone trick or treating and eaten LOTS of candy.  We have had dance parties, baked cookies, had Easter Egg hunts and gone swimming.  We have played dress up, had game nights, eaten ice cream sundaes and cupcakes.  We have made new friends, gone on walks, rode bikes, looked for turtles and toads, planted flowers and read bedtime stories. 

We have been through a lot...but we have also had so many good times together.  We are always together and we are so grateful.  

Here is a little slide show that I put together.  It starts the day Sheridan was born.  It is only a few of the thousands of pictures I have taken since that day but they are reminders of some of the places she has been on her journey.  She wakes up every morning with a smile, sees the best in everything and is always excited for life.  It also shows Sam by her side since the day he was born.  He is such an awesome brother.  Now they are a team of three and seeing them together makes us so happy.   

http://www.smilebox.com/playBlog/4e4445784e6a49784d7a4d3d0d0a&blogview=true

Details about Wednesday's surgery...she is having corrective surgery on her soft palate so she will be able to be more easily understood when speaking.  Her soft palate does not do what it is supposed to do when she is speaking and air escapes up and out her nose, making it difficult for her to clearly produce certain sounds and in turn be easily understood.  If everything goes well and the surgery is successful it should have amazing results for her, which is awesome!

We will update you after surgery but it may not be until the afternoon.  Prayers are always appreciated for a safe and smooth day for Sheridan. 

Give Kids the World!

I just finished playing Candy Land with the kids :)  We have a very cool Candy Land game that was given to the kids on our trip.  It is modeled after the Give Kids the World Village that we stayed in.  They love playing it and remembering all the fun things we did there!

The story of our trip would not be complete without trying to describe the Give Kids the World Village.  It is an amazing place!  It is difficult to put into words how you feel when  you are there.  They go to great lengths to ensure that, as much as possible, families and kids have the time of their life and do not think about the challenges they face in their everyday lives.  Disney World alone is a magical place to visit, but staying at the village is truly incredible.  They think of everything for every child, from toddlers to teenagers.  There are over 1200 volunteer "angel" slots that are filled each week to run the village.  That in and of itself shows you that not only are you in an incredible place, but you are surrounded by wonderful people who choose to give their time to help make your child's trip fantastic :)  When we are able to go back to Disney World again in the future it will definately be a part of our trip to volunteer at the village. 

Each family stays in a 2 bedroom condo that looks like a story book house from the outside.  We even had rocking chairs on our front porch :)  It is perfect!  Every morning the volunteers bring the kids gifts.  One of their favorites was the Candy Land game that I talked about above.  In the village there is an awesome playground (you will see it in the pics below) that is also based on Candy Land.  There is a pool with a spash park, putt putt golf, a train station, merry-go-round, fishing pond and much more!  One of the kids favorites was the ice cream shop that is open from 7:30 a.m. to 9:30 at night.  They could walk in any time of day and choose whatever they wanted for their special treat.  Sheridan had many chocolate milkshakes throughout the week :)

Take a tour of the village in the pics below!

This is the House of Hearts where you go when you arrive.  It is like the "lobby" of the village where you can go if you need anything.  The staff and volunteers who run the village are beyond wonderful!



 You will see pics of us playing putt putt on our last day in the village...Sam loved it!

 Another favorite of Sam's!!!  Patrick and Sam got to go on a special tour of the area under the model train town to see what makes it all work :)

 One more favorite of Sam's was driving the toy boats in the water :)

 Here is the Ice Cream Palace...more pics of the kids enjoying it to follow too :)

 This is Rusty, and Sam with Rusty ;)

 

 The next series of pics is of Sheridan putting her wish star up in the castle.  She had so much fun :)  First she sat down and wrote her name on it...

 Next she put it in the special spot so the fairy would come and get it...

 Then you press the star and the fairy comes to collect your wish star...she can see the fairy on the screen :)

 Patiently waiting...

 Finally her star is up!!!

 You can see all of the wish stars in these pics.  Every child who comes to Give Kids the World gets to put their wish star up...they know where each child's star is and if we go back one day they will help her find it.  Pretty awesome!!!

 The carousel

 

 and some horses too :)

 LOVE this quote :)

 The fishing pond

 

 This was our view of Amberville Pond as we drove to our cottage.

 

 One of the story book cottages :)

  Mayor Clayton is the mayor of the village.  He is a bunny rabbit and this is his house ;)

 The outside of the pool...very fun!

This is Matthew's Boundless Playground...Matthew was a little boy who came on a wish trip to the village.  His dad worked for Hasbro (the maker of Candy Land), so after his trip his dad got Hasbro to make the special edition of the game for all of the kids who come to the village.  After Matthew passed away his family and Hasbro donated this amazing park to the village in honor of him.  Sam & Sheridan LOVED it :)  More pics of them playing there to come...

 

Gators, Elephants & Rhinos, OH MY! And Epcot too!!!

After meeting Mickey and Minnie the day was off to an awesome start!  We headed over to animal kingdom for some more fun.  We knew that this would be a favorite of Sam's.  We headed straight back to the safari before checking out the rest of the park.  After the safari we walked around to see some more animals and then checked out the Lion King show.  The show was fantastic!  We also got to see a few of Mickey and Minnie's friends :)  It was a blast as Sheridan would say :) 

After we finished at Animal Kingdom we went to Epcot for the evening.  It was a little more for Patrick and I but the kids had fun on the Nemo ride and loved "Turtle Talk" with Crush.  We got to see all of the characters again at the character spot there...they couldn't get enough of the characters!  We were there for the food and wine festival which you can imagine we enjoyed ;)  We got the kids something to eat and then took our time wandering around the World Showcase...Epcot at night is beautiful, definately something you should see at least once. 

Sam is touching his cheek where Minnie kissed him ;)

 The pic below is the second half of the story that started in the morning with Sheridan trying to bring Minnie with us...at Epcot that night when we went to leave the character spot Minnie ran over to the glass window (we were already on the outside) and walked the length of the building with her hand on Sheridan's hand on the glass!  Then she got down in the corner and waved good bye to her.  Minnie was Sheridan's new best friend to say the least!  We think it had to be the same Minnie from the morning,

but we will never know! 

 This was our view as we walked the World Showcase and enjoyed delicious food from many countries

...beautiful!

Another awesome day :)