Thursday, January 24, 2013

Catching up

Catching up on few things I have had on my mind lately....

Claire was supposed to go to Duke today for eye check up.  But after my germ-a-phobe self thought about how bad it was going to be in the tiny, packed waiting room with other people who may or may not be sick, I called and rescheduled it.  Yes, I know it was at the eye doctor and not a medical doctor's office.  But still, that waiting room was really packed last time we went..... 

So I had asked for the day off anyway, so I decided to go up and visit Jax and his family.  We had talked about me taking some family pictures of them a few months ago, but it just never worked out.  So I thought it would be a fun diversion today to go up and take some pictures.  Jax is back in a regular room and the only wire he had attached (besides his port) when I got there today was his pulse ox!  YAY!  His mom dressed him up in super cute clothes and we proceeded to do the best we could in a small hospital room to take a family photo and then some of Jax and Amber.  I hope she will like them even though I am not the best photographer.  You would think I would be good at taking hospital photos as many as I took of Claire!  haha  Maybe I will get to share some here on the blog.  Need to ask permission first.  There is one super good one that I love....  Anyways, Jax is doing awesome!!  He even started a new dancing thing today while I was there.  :)  It's just a sit and wait deal now. 

I have also learned a little about a very special organization that has been helping Jax and his family while in Greenville.  Check out their website at:  http://www.rileysarmy.com/.  They are awesome volunteers and so very comforting and encouraging to families dealing with pediatric cancers.  From coming by to visit, to helping to set up birthday parties when you are out of town, to bringing pizza by for supper, they seem to really be so supportive to Jax and and his family. 

As for Claire, she is growing so fast.  Her preschool teacher today said she was like a parrot.  Meaning she repeats EVER.Y.THING you say.  Her teacher said she will be talking then hear an echo behind her and realize it's Claire!  Also, one of my new favorite things is that she is singing "Jesus Loves Me."  I wake up some mornings hearing her sing it on the monitor.  Tonight, she was singing it in the bathtub.  I will try to catch her and video it the best I can.  Melts my heart.  She can also say and recognize all of her ABC's, can spell her name, can count to 14, and is starting to recognize numbers.  She is in love with Disney Princess Ariel.  And sometimes Snow White.  It's really sweet too at night when she gives Trent a good night hug, she leans over and as she is hugging him, she says "aweeeeee".  Guess she's heard that a time or two.

And on one last note, we worked on some random acts of kindness in memory of Claire's heart friend Charlotte over Christmas.  Her mom posted about it on her blog today.  Check it out here:  http://charleysheart.com/2013/01/charleys-rak-music-to-my-ears.html  May it inspire you to do some random acts of kindness for others. 

And....we are excited about a few things coming up for heart awareness month in February and also Congenital Heart Defects Awareness Week in February.  Stay tuned for what Ryland's aunt is working on for Ryland and Claire! 

Love,
The Scott Family

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