Wednesday, June 26, 2013

Updates

Things have been busy- as usual- but good.  Casey is still having feeding issues.  She has not been able to gain weight like we had hoped and so we are spending a lot of time trying to get more calories and fluids into her each day.  Her site is still so leaky that it's hard to know how much she is really getting.  The bile that leaks out has been causing some skin issues around the site too that just look horrible.  We have some new paste that we are putting on this week that seems to be helping some.  We have to check back in with her doctors pretty frequent while they help us to get things back on track.

Casey's molars are coming in.  Her poor little mouth is so swollen and red.  They are all coming in at different angles and since she can't close her mouth or bite we just have to do our best to keep the orajel loaded up for her.

Last week Casey had dance camp.  Thursday through Saturday they had 2 hours each day of dance.  She had a lot of fun and was happy to see her friends.  On Saturday they wrapped up camp with a little number they worked on all week.  They made tshirts to wear on Saturday too.  It was pretty cute. 

Casey got her very own library card.  She is such a little book worm.  She help on to her card with such pride all day.  When she made her book selections and we went to check them out she did a great job (with help) handing the librarian her card.  Of course, she somehow found elephant books.  She is so funny about her elephant books.  She loves to watch her My Little Ponies, and she likes princesses and Tinkerbell movies, but when it comes to books she always wants to get elephant books.  They can be fiction or non.  If it has an elephant she wants to read it. 

I think we are going to try and see Monsters University next week sometime.  She will love that.  She hasn't been to a movie in a while so I think it will be a fun treat.  We'll have to take her to see the new Despicable Me in a few weeks too.  The first one was her Make-A-Wish movie so that one is extra special.  There was a My Little Pony movie that came out this summer, but it is not playing anywhere nearby yet.  Hopefully she will be able to see it sometime soon.  If not, hopefully it will be quick to DVD. 

As always this time of year, it's hot outside.  We are doing our best to keep cool and enjoy our summer.  We hope everyone is doing the same.  I'll try to get some more pictures uploaded soon.

Sunday, June 02, 2013

The Big Show

Casey had her recital last night and she did a great job.  All of the kids did great.  We are so fortunate to have an organization like Legacy of Hope in our area to offer programs like 2Dance2Dream for Casey and other kids with complex needs.  Being able to see Casey take the stage was such a gift and the entire night is one we will forever treasure.  Casey made lots of new friends in her dance class.  Last night she had so much fun seeing her friends and showing off all of the hard work they have put in.  Afterward they all got trophies (Casey's was purple- so perfect), flowers and lots of praise.  It really was a wonderful, magical event.  I am so glad that some of our families and friends were able to join us to cheer Casey on as well.  For those that missed the show- we do have some videos to share.  Of course when Casey was on stage the camera followed her, but for the other performances Tim was able to get most of the dancers.  There were a few other performers that he knew so he did get more of them for their parents, but regardless the videos are still so sweet and special.  I am sure I will watch them all over and over again myself.  Enjoy!



Intro Video
Parent Video
A Message from 2Dance2Dream
Go
The Gift of a Friend
Baby
Lollipop
Who Says (no sound- copyright issue)
Stepping Stones
Somewhere Over the Rainbow
California Gurlz
Finale- I like to Move It (link will be added soon)