Claire's first beach trip

Even though we live 30 minutes from the beach, we had never taken Claire before.  I figured it would either be a love relationship or hate relationship.  From the pictures below and her face, you can tell she loved it.  Absolutely loved it!  She ran and played and jumped over waves and threw shells.  Complete strangers on the beach made several comments about busy she was and how much energy she had.  They just have no clue!  We met cousins Connor and Anna down there and also friend Jack.  We wanted to see how Claire did at the beach because we are planning a beach vacation sometime this summer!  Our first family vacation ever!

Love her face!  This is how she was the whole day.

See the 2 little specks all the way down the beach in the center of the photo?  That's us running!

I did decide it's time to find a new bathing suit if I am going to be running up and down the beach this summer.  Also I found muscles I didn't know I had by picking Claire up over the waves.  It brought back so many fun memories of when my family would go to Emerald Isle every summer for a week every year.  I just have not figured out how my parents managed to watch 4 kids on the beach.  I could hardly keep up with one!  Maybe Granny and Big Daddy need to start renting a big beach house for a week again in the summers for the whole family to come down.....Hmmmm.....

Love,
The Scott Family

Duke Cardiology Checkup

What a day yesterday.  Claire, Amanda, and I headed to Durham for Claire's 1st annual cardiology checkup.  Let's just say it has not gotten easier with time.  Number 1, I was stressed out thinking what could have happened or not happened in a year.  Number 2, Claire is a million times stronger than she ever was.  

We went to the ICN first to visit Nurse Susannah.  This was one of the few highlights of the day!  

To say the least, they should have listened to me and sedated her for an echo.  We got to the echo room and the echo tech immediately was like, ok this will not work.  So he went out and got 2 other techs.  While he blew bubbles, turned Elmo on, and the other tech danced with 2 stuffed animals, the third tech tried to do the echo.  I had Claire between my legs on the bed with my legs wrapped around hers and my arms holding her arms as she twisted and screamed.  Torture for her.  They maybe got 2 pictures of her heart.  Done.  

We then headed upstairs for the appointment.  Claire was running through the waiting area yelling "boys!" at any child she saw.  Having a blast.  But then we tried to get her to stop running and that ruined her day.  I took her to the bathroom hoping she would calm down as we were being stared at by everyone.  Then the ultimate scary thing happened.  The automatic paper towel dispenser went off.  Claire literally started shaking and ran screaming towards the door!  I felt horrible!  

Then here came the attempted weight and height and blood pressure.  One out of three got done - weight.  The assistant decided against attempting the height and blood pressure.  I am sure the BP would have been sky high.

Now the EKG.  Yeah right was all I could say.  They tried sticking the stickers and wires on her as I held her arms and Amanda held Claire's legs.  No way was that happening.  So no EKG.  

They put is in an exam room and turned out the lights to hopefully calm Claire down.  To get her height, we had to lay Claire on the exam table paper and mark her head and feet with a pen so the nurse could use a tape measure to get the height.  

Claire finally cried herself to sleep in my arms.  So the cardiologist was able to really listen to her heart in which I was glad.  She was out like a light so he got to listen a long time.  

Basically, her heart is the same.  Still pulmonary valve leakage, still "turbulence" where the muscle and tissue is in front of her pulmonary artery, still a murmur.  The right side of her heart function looked good.  So she is good to go again until next year.  

To top off the day, we met Dr. Rachel at Firehouse Subs for lunch!  It was so nice to visit outside of the hospital.  So the highlights of the day were seeing Nurse Susannah, getting a good heart report, and seeing Dr. Rachel.  :)

On another note, Jax is off the ventilator, backing off pain meds, and doing really good!  He has no leukemia in his cells or blood as of yesterday!  And his momma is getting to hold him today for the first time in almost 2 weeks.  Jax will hopefully get to come home in the next week or 2!  Thank you for the continued prayers for this miracle child.

Love,
The Scott Family

Cabbage Patch

Look what I found in the cabbage patch!  It brought back memories of me having those Cabbage Patch dolls growing up.  I guess I now have my own, real life cabbage patch doll now!  She is homegrown!

Love,
The Scott Family

Miracles do happen

Praise the Lord for a good day for Jaxson today!  Amber texted me this morning that his ANC was up to 1400!!!!  And his white blood cells were up to 2.4!  This my friends is a miracle for a child who less than a week ago was really, really sick.  Sick enough that the doctors had "the talk" with his parents.  Thank you all for the prayers for Jax.  Please keep them coming as he still has a long road ahead of him.  It's wonderful to see the work of God when you least expect it.

On another note, Claire has a cardiology check up this week.  I have to admit I am nervous.  I know she looks good and is growing great.  But it's been a year since we have seen the cardiologist.  I will never take Claire's health for granted and never be surprised (well I probably would be) if we got some weird news at her appointments.  I don't ever want to let my guard down because as soon as I do, that's when something unexpected will happen.  So please pray that Claire's heart looks perfectly healthy and that she is good to go until another year!

Love,

The Scott Family

Only

 Only I would take our child to Tryon Palace gardens so she would have a closed in area to run free without me having to worry about her escaping me.

 

Only our daughter would think the mounds of canon balls were "grapes" as she hugged them.

Only our daughter would surprise me and actually let me put THREE hand prints on a coffee mug for DaDa for a surprise Father's Day present at Accidental Artist.  Only now it's no surprise anymore as we were blasted on the evening local news that night in front of the store (see below).

 
Only I would open my big mouth as we left Accidental Artist and saw the local news channel outside.  Only I would tell them how much Claire loves to watch the news, especially the weather (the girl below is one of the weather women) and ask if we could have our picture taken with them.  Only then would this lead to them asking us to be on the news that night talking about how our hometown is listed as #6 nationally for boating towns.  Only I would sound super redneck once again on the news while wearing a sweatshirt with holes and jeans that are 10 years old while Claire had paint all over her mouth.  Yep, only us.

Only Claire would be obsessed with feeding the ducks old hotdog buns.  Only Claire would garner crazy looks from other people as she ran and chased the ducks (like they thought she was torturing the ducks).

Only I would freak out because there were 2 dead fish on the shore that Claire kept almost stepping on (and actually some older kids were standing on top of one fish).  Only I would garner crazy looks from other parents when I whisked Claire away screaming after she ran into the water as I started thinking about all the nasty germs that are in this river water.

Only if these days would last forever that I get to spend special time with our only child.  If only.

Love,

The Scott Family

PS - Jax had a good day today!  His doctors say he has rounded a corner so thank you for all of your prayers!  What a miracle.  Please continue to pray!

Answers

Prayers are being answered for Jax.  Please continue to pray that his ANC continues to go up, up, up! 

Thanks!

Love,
The Scott Family

Prayers for Jaxson

Today was a tough day for Jaxson's family.  The doctors have prepared his family to start thinking ahead in case the miracles do not happen and his earthly body is not healed.  Please continue to have hope and pray for Jaxson and his family.  Miracles can happen.

Here are a few pictures I took a few months ago so you can look into the sweet blue eyes of this little boy that you are praying for.

His mom asks for prayers specifically that his ANC (absolute neutrophil count I think or white blood cells) will come up ASAP.

Love,

The Scott Family

Prayers for Jaxson - a miracle needed

Jaxson has had a rough week.  Since his surgery last Monday, he was feeling better!  But Saturday night he had a rough night and the doctors noticed that the parts of his intestines that were on the outside of his body for the colostomy bag were turning dark.  Not a good sign.  Sunday morning he went back into emergency surgery thinking they would just remove the part of the intestines that was dying.  When the doctors got inside Jax's abdomen, they found much more than they bargained for.

The fungal infection had spread.  There were black spots of dying tissue on Jaxson's small and large intestines, colon, stomach wall, and bladder.  There is nothing the doctors could do so they closed him back up without removing anything.  Jaxson is really sick.  His fever went to 103.9 last night and they were having to cool him down with ice packs and lowering the AC in his room.

Today I got to visit him and his family.  He is still sedated and on lots of medicines and still on the vent.  The doctors said today that they don't know of anyone who had ever beat this type of infection.  But they are trying everything they can.  The medicine Jax needs to beat the infection will only work with white blood cells (WBCs) which we know Jax has none or very little due to the chemo.  So they have given Jax some sort of bone marrow medicine to help generate WBCs in his own bone marrow.  This could be helpful for fighting the infection, but more than likely, the leukemia will return by doing this.

They have also called the Red Cross to find a donor of WBCs.  This person received medicine yesterday to boost their WBCs.  They will have their blood drawn either today or tomorrow, and the blood will be flown to the hospital Jax is at.  He will then receive this donation in hopes to boost his WBCs.  The issue with this is that this is very hard on the recipient.  It could cause him to go into anaphylactic (sp) shock.  It could make his temperatures go even higher.  This WBC transplant can also kill him.

Jax needs prayers for a miracle.  Please pray for him.  Whatever God's will is for him.  I will try to update when I hear anything.

Thanks for the prayers.

Love,
The Scott Family

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