Staying Strong

Last week when I visited Jaxson and his family, we took a few photos.  I asked his mom and she said it was ok for me to post some here.  I had originally  had the idea of having Amber's "stay strong" tattoo in the picture with Jaxson and I think it turned out pretty neat.  She got the tattoo years ago, but I thought it had a special meaning for this journey that they are going down now (couldn't decide if I liked the black and white or color better on first picture!).

Jaxson seems to be doing good!  Please continue to pray for him!

Love,
The Scott Family

Mother of the Year Award

This weekend Claire has been running a fever.  Not sure what is going on with her but she acts perfectly normal.  It started Friday night after her bath, I noticed she was breathing fast or "hassling" like a dog.  I didn't think too much but as the night went on and she was playing before bedtime, I realized she felt hot.  So I turned on her fan and cool mist humidifier hoping it would help.  See, I had bumped the heat up that night at supper from 70 to 73.  So my first thought was she was just hot since the heat was higher.

But then I thought she felt really hot.  I checked her temperature and it was 102! I checked it again and it was 103!  I freaked out, ran and got her some milk and tylenol and she drank it down.  I took her fleece PJs off and put on some thin cotton ones.  She still acted fine.  She went to bed and I checked her temp throughout the night and it ranged from 100-102.  She continued to hassle all night even though I turned the heat back down.

I woke her up at 7 am to give her some juice as I didn't want her to get dehydrated.  I checked her temp in her room and it was like 101.  Fifteen minutes later it was 99.5 after we went into the den.  So then I started wondering if I had basically burned my child up in her room all night with the heat!  I felt so bad.

But then as the day went on, I realized she still had a temperature ranging from 100-102.  So then I knew I did not need to feel bad that I won the Mother of the Year Award for burning up my child with the heat in her room.

But we still are not sure what is going on.  Claire is still running a low grade fever today.  Ranging from 99-100.  So we will just watch her and see.  She still acts normal and happy.

Please pray that whatever is going on that it goes away as quickly as it came!  So much for trying to be protector of Claire and not take her to her eye appointment to avoid getting sick.  I guess it happened anyway!

Love,
The Scott Family

Jesus Loves Me

In case you cannot tell what she is singing:

"Jesus loves me, this I know.  For the Bible tells me so."

So sweet.

Love,
The Scott Family

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

Jax update 1-20-13

I went up to visit Jax and his family yesterday.  Well, I don't really get to see Jax since he's still in the PICU but you know what I mean.  The doctors had removed the ventilator late Friday night and so that meant he was getting stronger!  Yay!  Amber seemed to feel much better this weekend than last weekend of course.  So we went out and got a really good cheeseburger for lunch since I had been promising to take her out to lunch since this all started.  It was nice to get out and visit.

As you can see from the picture, all he has now is the feeding tube.  I am sure he still has an IV or 2, but they were starting to remove some of those yesterday also.  And he also still has his port.  His WBCs were 600 as of yesterday when I asked Amber.  Jax is still congested so he is staying in PICU so they can do some testing tomorrow to see if they can figure out where and why he is congested.  They are hoping he can move back down to a regular peds room sometime this week if he stays on this track.

I am hoping to get up there again once he gets in a room that I can see him in, and we are planning to take some pictures with my big camera.

As you can see, your prayers are working.  And God is continuing to work His miracles of healing.

On another note, Claire goes to Duke Eye Center this week for her eye check up.  I hope it goes well and that everything looks good!!!  We may have to find that weird video again they had with the 4 stuffed animals over and over again.

Love,
The Scott Family

Ham Dinner Benefit for Jaxson - Feb 22

Today's update on Jaxson - They tried weaning him off the vent today but Amber said he was still working too hard to breathe on his own.  So they are keeping him on it for a little while longer.  The doctors are still trying to decide whether or not to remove his port as it may be the source of the fevers he is continuing to spike.  Please continue to pray for Jax and his family.  This is just the beginning of his journey.

I also received an email tonight about a benefit ham dinner fundraiser planned for Jaxson.  This is exactly like the one they did for Claire 2 years ago.  I am so happy to be able to actually help and give back this time and to work with the same groups of people and communities that worked so hard for Claire.  So here are the details I have so far:

RHEMS & POLLOCKSVILLE VOLUNTEER FIRE DEPARTMENTS HAM DINNER BENEFIT FOR JAXSON MCLAWHORN

WHEN:  FRIDAY, FEBRUARY 22, 2013

11 AM TO 7 PM

WHERE:  RHEMS VFD MAIN STATION, HIGHWAY 17 SOUTH, NEW BERN

WHAT:  HAM, POTATOES, GREEN BEANS, ROLL, AND DESSERT 

COST:  $7.00 A PLATE

PROCEEDS TO BENEFIT BABY JAXSON MCLAWHORN

JAX IS THE 6 MONTH OLD SON OF JUSTIN AND AMBER MCLAWHORN AND WAS RECENTLY DIAGNOSED WITH LEUKEMIA

TICKETS WILL BE AVAILABLE FROM ALL FIRE/RESCUE MEMBERS OR CALL KAY AT 252-671-6684 OR KEITH AT 252-514-3584

WE WILL DELIVER LUNCH ORDERS OF 10+ PLATES

WALK-INS WELCOME AS LONG AS THE FOOD HOLDS OUT

VOLUNTEERS NEEDED TO DRIVE AND DONATE POUND CAKES

If you have any questions, you can always ask me. If I don't know, I can find out.  If you need tickets, let me know too.  If you want to donate pound cakes and can't make it out that day, let me know and I can arrange to get them from you.  If you are interested in getting a plate, I suggest buying a ticket ahead of time.  From experience with Claire's benefit dinner, the food ran out right before supper time and people who had tickets came first before walk ins.  And even then, some people with tickets who came later in the evening didn't get plates.  So buy tickets ahead of time and be sure to get your plate early!  They try really hard to estimate how much food to prepare based on ticket sales and estimating walk ins.  It's a hard job to figure on walk ins. 

Anyways, as I find out more details, I will post them here!  

Love,

The Scott Family

Jaxson update 1-15-13

Jaxson seems to be doing better although he is still having fevers.  The labs still have not come back with any information on the 2nd infection.  The doctors said today they will start weaning him off the vent and the paralytics (may have done this today).  

Amber sent me this picture today and as soon as I saw it I started having flash backs of when Claire looked just like this after both of her surgeries.  Although the situations are different, my heart feels every emotion.  I really have a hard time explaining just how much my heart is aching for them.  

Please continue to pray for Jaxson as they wait for his white blood cells to increase back to 5,000 so they can start chemo treatment #2.  Prayers can work miracles.  

Love,
The Scott Family