Jax update - take 2

So, once the doctors got in there during surgery, they realized that Jaxson's intestines and appendix were not backwards or twisted.  They were right!  Which is good!  But they think there was some type of infection (possibly fungal) in his intestines so they had to remove several inches.  They sent the tissue off to check for leukemia cells in the intestinal tissue and also to see what this infection was.  It was basically killing his intestines.  Jax will have a colostomy bag for approximately 3-6 months.  The doctors are afraid to reattach his intestines while his counts are low in fear it will not heal correctly and cause more damage.

He is in PICU now recovering so please pray for a quick recovery and that this will be something simple to solve.  They also tested his bone marrow today and it came back negative for leukemia cells so that is great news!

Love,
The Scott Family

Jax update - abdominal surgery

Over the weekend Jax continued to be in lots of pain and began vomiting bile.  The doctors finally did a CT scan last night and found that Jax's intestines were flipped.  Basically at 10 weeks gestation, a baby's intestines have been growing outside the body in the umbilical cord.  At 10 weeks gestation, the intestines flip and then move inside the baby's abdomen.  Well, come to find out that his had never flipped therefore were twisted and had a blockage! 

You can read more about intestinal malrotation here:  http://kidshealth.org/parent/medical/digestive/malrotation.html


So they did surgery today around lunch time to untwist Jaxson's intestines and also remove his appendix because it was on the opposite side of where it was supposed to be.  He has made it through surgery and they are waiting to talk to the doctors.  Hopefully this is the reason he has been in so much pain lately and it will now be relieved.  Please pray for Jaxson and his family!!!! 

Love,
The Scott Family

2013 Preschool Art Show

A few weeks ago Claire's preschool had an art show as a fundraiser.  As I am posting this I realized I didn't even take a picture of the 2 items that caused my heart to race!  Ugh!  More on that in a minute. 

Claire is not a painter.  Just today, her preschool teacher said it was the very first time she actually held her hands out to be painted without forcing her to.  So to see her paintings, I know the teachers worked really hard!  Basically the preschool decorates the church basement with all of the children's artwork.  They serve finger foods and punch.  So much fun!  Then each class created a piece of pottery and painted a canvas.....The 2 things I forgot to take pictures of.  They do a silent auction on those pieces from each class and also baskets full of fun things.  Of course, I had my eye on the canvas for Claire's class.  It was a sunshine with all of their hand prints around it and it had "You are my Sunshine" on it.  Will's mom couldn't come because they were sick and she had her eye on the pottery which was a pitcher with their finger prints on it made into fruits.  Cute!

So as I have never bid on things before in a silent auction, it was exciting!  My heart was racing as I was texting Caroline about the pitcher and bidding on it for her.  My mom was keeping an eye on the canvas and bidding on that.  What a rush!  Needless to say we walked out with the canvas and I took the pitcher to Caroline.  Lots of fun!  

Here are few of Claire's artwork....

Ignoring any name tags, can you guess which one is Claire's below??  Remember she does not like painting.  It's really easy to tell!

If you guessed the one with 9 dots on it, you were right!  (next to last painting at the bottom)


Then I saw this and I just about died.  How sweet is this?  It's the class's "self portraits".  The teachers even put the child's picture next to the portrait.  What's funny is the self portraits actually look like the child!

And then my heart completely melted when I saw this one......

It is already framed and getting ready to be hung on the wall.  Claire's teachers said she actually did paint her hair.  She loves to paint with whatever that swirly thing is.  And the teachers even glued little bows in her hair like she wears!!!  Love it!

I really enjoyed Claire's first art show.  I can't wait for next year.

Love,
The Scott Family

Prayers needed for Jaxson

Jax has had a rough couple of days lately.  He's been in SEVERE pain and been placed on pain medicines and a morphine pump.  Amber and his family determined he seemed to be in most pain in his legs and hips.  The doctors did x-rays yesterday thinking there might be a fracture or broken bone.  They did not find any.  So now they are thinking Jax has Avascular Necrosis (read more here: 

http://www.mayoclinic.com/health/avascular-necrosis/DS00650) which is basically a dead blood vessel in his hip bone.  He is currently getting an MRI to verify that and to also (I think) check his brain and spine for clusters of cells again.  He is also currently getting his spinal chemo and spinal tap.   Jax needs LOTS of prayers!  Please continue to pray for him and his family.

 

Love,

The Scott Family

"Field trips"

I took Friday off from work so my mom could have the day off from keeping Claire.  That way my mom had all day to help Amanda get ready for the wedding.  So Claire and I decided to do some mini field trips.  We went to Parker Farms and attempted to pick strawberries.  Claire was only interested in picking the yellow marking flags.  I picked a few strawberries and then she stepped right in the box and smashed half of them.  Strawberry picking was then over.

We thought about going to the park, but we can do that anytime.  So I called Phillip to see where they were logging and we decided to ride out there and visit.  Claire loved it.  She could have stayed out there all day.  She loved sitting in Phillip's skidder and acting like she was driving.  She especially loved blowing the horn and turning the dome light on and off.  

We had a lot of fun on our little field trips!

Don't forget - we are collecting new children's books for Books for Charley this month!!!!

Love,
The Scott Family

Wedding Fun!

Yesterday Aunt Amanda and Uncle Colby got married!  Yay!  Claire was one of the flower girls with her cousin Caba.  Despite all of my fears, Claire did excellent!  Granted she walked down the aisle carrying a fire truck, but hey, it worked!  Here are a few pictures from rehearsal, getting ready for the wedding, and the reception.  Claire had a BLAST at the reception dancing.  She was the life of the party for sure (takes after her DaDa).

Caba and Claire rehearsing

Uncle Colby and Aunt Amanda

Getting ready!

The bride's shoes and the flower girl's shoes

Amanda and our parents before the wedding

Me and Trent - we were already exhausted :)

Flower girls preparing

Our family at the reception

These flower girls look like they were caught planning something....

Claire was having so much fun dancing!!!!

"DANCE!" - she loved the lights on the floor

Still dancing the night away in front of the videographer!

We had so much fun and we were glad to be a part of this special day!

Love,
The Scott Family

Books for Charley

We are so excited to announce that again this year we will be participating in Books for Charley!!!!!  I could hardly wait to post it!  And again this year, Charlotte's mom has so graciously offered for us to take the books that we collect to the PCICU (Pediatric Cardiac Intensive Care Unit where Claire stayed during both her heart and liver surgeries) at Duke.

For those of you who have kept up with Claire's blog a while know all about Books for Charley.  Those of you who may be new, you can go here to read more:  http://charleysheart.com/p/books-for-charley.html

Please help us again this year in collecting these special books that go to brighten a child's day who is going through something so traumatic, life changing experience due to heart related problems.  I have to say, not only do these books brighten the child's day, it also brightens the parents' day knowing someone cares about their child.

While we will take ANY children's book that you want to donate, if you are at a loss for what to buy, here are some suggestions from Duke - They really could use any Dr. Seuss books, board books, and nursery rhyme books.  Those are the most popular among the kids.  Also, please send new books, not used.  Germs are a huge thing when you are in the PCICU and so only new books need to be sent.

If you have any questions, please let us know!  We will be collecting books throughout the month of May.  And then when we head to Duke in June for Claire's cardiology check up, we will deliver the books!

Thanks for helping us to make Books for Charley a success!!!!

Love,
The Scott Family