Eating Issues

For the last year we have noticed that Claire is a really picky eater.  Ever since she got sick last March/April with that Klebsiella virus, her appetite has been very limited.  Before she would eat almost anything - especially spaghetti. Now she will not touch it with a 10 foot pole.  Not only is she picky about her food, she is very weird about her food.  See below her menu and her weirdness:

Claire's Daily Menu (meaning this is all she eats every day over and over again):

Peaches 
Pears
Grapes - only red seedless
Mandarin oranges - she used to eat them out of the can and out of the plastic containers.  Now she will only eat them out of the can.  And she will only eat them at my parent's house - not our house.  To tell if she will eat them or not, she takes the orange and puts it to her mouth (like the side of her mouth).  Somehow this tells her if she wants to eat it or not.)
Bananas
Cheerios
NutriGrain bars 
Raisins - this is about the only thing she will eat for snack at preschool
Pancakes - she only eats these on the weekend for breakfast.  I bought blueberry pancakes to try those and she has actually eaten a few pieces!
Gerber snacks - meaning those freeze dried yogurt dots, those Gerber cheese doodle looking things.  She no longer will eat the puffs.
Yogurt - Claire will not eat yogurt at my parent's house.  Just our house.  She will only eat the Yoplait Dora yogurt.
Low Fat Fruit and Yogurt Parfait from McDonalds - Claire actually LOVES this and will eat 2 whole containers!
Cheese - she is kind of getting out of eating cheese now.
Crackers - she will eat the Great Value brand wheat crackers - sometimes.
Turkey - only from a Subway sub
Doritos - do not ask my why she decided these looked good enough to try.
French fries - she is just now getting to where she will eat a few french fries.  About the only vegetable she eats!
Chocolate Fudge Pop Tarts - she loves these pop tarts.  I only give her the edges of the pop tart.  I eat the rest.
M&Ms - this baby has loved M&Ms from day one
Goldfish - Claire really only likes the baby size Goldfish and will only eat them at my parent's house.  She won't eat them at our house at all and will SOMETIMES eat a few at preschool.

That's it.  You would think she would get tired of eating the same things over and over.  If I put something different on her plate or offer her something like pizza or cake she makes a gag face and noise and gets really mad until I get the piece of food off of her plate.  She will not try new things.  I am worried that she will start not having enough nutrition for her growing body.  I do not want her to have to drink Ensure or something.

So I am wondering if anyone out there has any advice, suggestions, etc.  Where most kids will eat chicken nuggets and pizza, Claire won't touch it.  I have to carry her food with us where ever we go because I know she will not eat whatever is there.  I know eventually (or I hope at least) that she will try new things.  I thought when she saw her friends in preschool eating different things that she would try them.  But that is not the case.  She doesn't care!  The teachers keep raisins on hand for Claire.  They said they give her whatever snack everyone else is eating first to see if she will eat it.  If not, she gets raisins.

Claire does not like change. So changing up her food is something she is not interested in.  I think she would rather just eat the same things over and over even if she is sick of them than rather change and eat something different.  And I think she also has a texture issue.  She doesn't like sand or anything on her hands.  She puts foods to her closed mouth or chin to "check them out" sometimes before she eats it.  She gags at new things when we have never even done that in front of her so I have no idea where she learned that reaction.

HELP!!!

Love,
The Scott Family


PS - I typed this blog post a few days ago.  Last night Trent and I were talking about our concern of Claire's eating habits.  I kept saying I didn't understand why she was such a picky eater.  As I am saying this, Trent points out that I am sitting there picking the little bits of chicken out of my chicken noodle soup (b/c I just can't eat those things) and then I start picking the heart shaped sprinkles off of my piece of cake b/c I don't want to eat those either.  I pointed out that Claire does not see me picking through my food - she was already playing - so it's not like a learned habit by watching me be picky (all the while I did not realize I am a "picky" eater).  Trent then pointed out that it didn't matter that Claire was not seeing what I was doing - "She is 1/2 you, Rebecca.  Remember that."  So, am I the cause of her pickiness?

Happy Heart Day Claire!

Yesterday we celebrated Claire's "Heart Day".  Each year on February 23rd we remember when Claire's heart was repaired.  It was a day that all of our hearts stopped while Claire's heart was stopped.  Then all of our hearts and lives were restarted when hers was.  We are so thankful that God blessed us with a special little girl and also with the doctors and nurses that were blessed with the skills to fix complex congenital heart defects like Claire's.

We celebrated with a new hair-do and by wearing her new heart outfit she got for Valentine's Day.

We celebrated by eating heart shaped cakes made by Grandma (well Claire wouldn't eat any - more on that in another post about her eating habits/issues).

We made music CDs with cute cases (I cut out hearts and put a bandaid on each one) to deliver to the peds unit at the hospital where I work.  We did this for the Charley's Random Acts of Kindness, so I thought we would carry on the fun and take some more CDs up for the kiddos.  Claire loves music so much, Trent and I thought by sharing music with others, we could brighten their day.  I haven't decided whether I am going to write "Music to make your heart happy" on the CDs yet or not...  Our next project is to make lullaby CDs to deliver to the babies at Duke ICN.

And of course, we celebrated by giving Claire a few gifts.  I ordered the "Zip Line" book that I talked about in a previous post.  Unfortunately after I wrote in the front of it, I realized it was missing 2 pages!  So I am having to send it back and get a new one.  Oh well.  Claire also got a new CD of kids songs by Jewel. I highly recommend this CD!

We had a nice quiet afternoon at home and were blessed by spending the day with Claire.  We hope to carry on this celebration year after year!

Love,
The Scott Family

Politics

Anyone who knows me knows I am not into politics at all.  Seriously - I don't even know if the elephant or the donkey is the symbol for the Republican party.  It's not that I do not care.  It's really just that it's so much to understand and I just don't get it most of the time.  But when it hits close to home, I really try hard to understand how it all works.

Last week on the heels of CHD Awareness Week, a friend posted a link on Facebook about pulse oximetry testing in North Carolina.  I immediately followed the link and it took me to the NC General Assembly website to read about House Bill 105 - Require Pulse Oximetry Newborn Screening.  Here is the link in case you want to read the entire bill - it's only 1 1/2 pages.

http://www.ncleg.net/gascripts/BillLookUp/BillLookUp.pl?Session=2013&BillID=h105

My immediate reaction was YES!  They are finally realizing they need to require the pulse ox test for ALL newborns to screen for undetected congenital heart defects in NC!  This is huge.  So, then my next thought was how can I let these people know how important this bill is?

I texted the link to Beth and Robing (Ryland's aunt and mom) and they seemed as excited as I was.  Beth told me to click on the link to find out who represents us and so I did.  I found out who our Representative in the NC House is and who our representative in the NC Senate is also.  Then I sat down to try to write a very condensed version of what I would want to say to these folks to convince them to see the light and to vote for this bill.  I emailed both of our representatives tonight and hope they will read our letter with understanding.  I also included the video link from the news story done on Claire and Ryland in hopes if they could put a face to the story then it would hit home easier.

I am keeping my fingers crossed that this bill passes with flying colors!  I have no idea about how long the process takes or what this bill has to go through to be passed.  But if you feel compelled, please write to your representatives in NC and let them know how important this is to all babies.  Help save families from having to deal with heartache or loss just because a heart defect was undetected and untreated.  If you do write to your representatives, you are more than welcome to tell them about Claire.  And please let us know if you do!  We would love to keep a tally on who was contacted so we can see how they vote on the bill.  It might just determine who I vote for in the future.

Love,
The Scott Family

Horsin' Around

The other weekend Claire, Trent, and I went to our neighbors house to see their horses and pigs.  Since Claire loves animals so much we knew this would be fun for her!  She loved the horse and pigs!  She petted the horse and even picked up the brush and started brushing her all by herself!  She wasn't too keen on sitting in the saddle on the horse but I can't blame her - I am scared of that too!

Claire also liked talking to the pigs - Madison and Francine.  She really wanted to put her fingers in their stall but they would have mistaken her little fingers for a snack!

It was fun watching Claire interact with different animals.  She sees them all the time in her books and on tv, so it makes me wonder what she is thinking when she sees them in real life.

Love,
The Scott Family

Claire's preschool Valentine's Day party

The kids in Claire's preschool class (and the teachers too) hosted a Valentine's Day party for the parents.  We were really looking forward to it!  They had lots of yummy snacks and punch and had decorated the room with A LOT of Valentine artwork!  It was fun watching Claire interact with her friends while we were there.  I worried once we arrived she would think it was time to go.  But she didn't and we all had a great time!  Here are a few of the pictures Trent was able to take before my battery died.  I should have been better prepared!

Doing the "freeze dance" around the table

Eating Valentine's Day snacks.  All Claire would eat were the M&Ms.  She even picked out the  M&Ms from Will's plate and ate them.  Talk about sugar high.

Claire and Leo

Will, Caroline, Graham, Jayme, me, and Claire

Will, Caroline, Leo, Leo's dad, Graham, Jayme, me, Claire, and a blue Care Bear  :)

When we got home Claire was excited to go through her Valentine's that she got at school that day!

Then she opened her gift from mommy and daddy.  She got a new heart outfit (of course) and an Easter place mat.  I think she was excited!

Hope everyone had a nice Valentine's Day!

Love,
The Scott Family

{Congenital Heart Defects Awareness Week} - Happy CHD and Valentine's Day

Happy Heart/Valentine's/CHD Day from our family to yours!  I was so happy to spend this day with my 2 Valentines!  We took this picture quickly before my camera died at Claire's preschool Valentine party.  Trent took a few more pictures before it died, but I will post those later and tell all about the fun party!

Love,
The Scott Family

{Congential Heart Defects Awareness Week} - Heart Cousins

Here it is!  Please click on the link to watch our video that aired on our local news tonight.  We hope this helps to spread awareness about CHD.  We are all proud of our heart babies! 



http://www.wcti12.com/news/Two-cousins-born-with-broken-hearts/-/13530444/18505350/-/yytux8/-/index.html


Love,
The Scott Family

{Congenital Heart Defect Awareness Week} - Proclamation #1

Ryland's Aunt Beth has been really working hard this CHD Week.  Not only did she set up the interview (that will hopefully air Monday night on the news), she requested proclamations for February 7-14 to be Congenital Heart Defect Awareness Week for New Bern (our hometown) and for the state of North Carolina.

The above proclamation is the one for New Bern.  The one for the state of NC has not been posted yet to the governor's website.  We all got copies of this one above and I did my best to take a picture and upload it so you can read it.  It is very neat!

Love,
The Scott Family

PS - Jax is doing well with his 2nd round of chemo.  He started last Monday and this round will last 8 days.  Please continue to pray for him that he stays strong and healthy throughout this round and infection free!

{Congenital Heart Defect Awareness Week} - Zip-Line

Lately, I have caught myself worrying about how Claire will feel one day about her scars.  Most days I know she wears them as badges of courage.  But at the same time, I hate that she has to learn to deal with 2 large scars across her torso.  With her personality, I think she will handle them well when she starts asking about them.  But on the other hand, will she be mad?  Will she be sad?  Will she be hurt?  Will she wonder what her mother did while pregnant that could have caused her to have to endure these things?  I don't know.  But the thoughts run through my mind and seem to be there more often now as she gets older.

So while preparing for CHD Week, I ran across this book called "Zip-Line".

As I read some of the lines in the book, I thought this would be the perfect gift for Claire one day.  Hopefully it will help explain her scars and what they mean.

"If you peek at my middle, in the center of my chest

you'll notice something different, it's not like the rest.

Some will wonder silently while others may just stare

but what you must want to know, 'How did that line get there?'

I wasn't struck by lightning or in a fencing duel

and I didn't get a scratch showing a lion who is cool.

I got my zip-line when I was young and the doctors fixed my heart

the scar that was left there is my personal work of art.

The zip-line is my trophy for being strong and brave

my surgery lasted hours and my recovery took days...."

It was written by a father of a little girl who had a CHD and had surgery when she was a baby in hopes one day it will help explain to her why she has these scars.  

So I can't wait to order the book and have it ready for Claire when she is ready to learn about her zip-line.  And hopefully make it a little easier to explain.  

Love,

The Scott Family

PS - Claire and Ryland (and their moms) were interviewed Wednesday by a local news channel to tell their heart stories and to help raise awareness of CHDs.  If you are local, watch WITN Channel 12 at 5:30/6:00 pm and Fox News at 10 pm either tonight or tomorrow night.  Not sure exactly which night it will air.  There will be a link on the news website, so once it is there, I will post it here!

Congenital Heart Defect Awareness Week - upcoming events

February 7-14 is Congenital Heart Defect Awareness Week!  Although I do not feel prepared with something for every day of the week, I do hope to have a few neat things to share.  One being that Claire and her cousin Ryland (who you may remember reading about on the blog who also was born with a heart defect) will be "interviewed" this week by the local news channel!  I am super nervous - one, because I freak out when it comes to stuff like this.  I do not talk well in front of people.  I told Beth (Ryland's aunt who has set this interview up) today that I feel like I am one of those random people that the news crews pick out to interview after a hurricane and when they talk on TV, you just cringe thinking, wow, is that how I sound too?    Plus on top of that, I have some sort of lingering cold that just won't go away.  So I will probably sound all stuffed up too.  Geez - redneck accent with sinus congestion.  Yep - sounding more and more like those random people on the news......

So we will see.  Maybe Ryland's mom will do more talking than me!  And I hope Claire behaves and plays nice with Ryland.  It's a 50/50 chance if she will have fun or if she will cry and be shy the whole time.  Just never know!  I guess the most important thing is that we hope it will spread awareness and information about congenital heart defects in children and ways to detect them.

I am excited about the few things we do have to share this coming week to raise awareness of CHD.  :)

As for a Jax update, he was readmitted to the hospital today to start his 2nd round of chemo.  This round will last 8 days and then he will get a 3 week break.  Please pray it goes smoothly and that he continues to kick cancer!

Love,
The Scott Family