Friday, July 29, 2011

Thirty two

In honor of "some one's" 32nd birthday today, here are 32 things about Claire:

1.  Claire is beautiful.
2.  Claire is strong and determined.
3.  Claire looks like her daddy and I love it. 
4.  Claire can roll and roll and roll all over the floor.
5.  Claire gives great kisses.
6.  Claire loves to laugh.
7.  Claire still gets up once a night most nights.
8.  Claire loves water - the bath, the pool, the sink. 
9.  Claire's two bottom teeth are extremely sharp.
10.  Claire is a special child of God.
11.  Claire recognizes her family.
12.  Claire likes to eat - she's even tolerating peas now.
13.  Claire is a survivor.
14.  Claire's big blue eyes are captivating.
15.  Claire loves to be read to.
16.  Claire loves to hear me sing (she's the only one who does!).
17.  Claire listens to lullabies every night when going to bed.
18.  Claire is a morning person.
19.  Claire hates to have clothes put on her.
20.  Claire loves animals.
21.  Claire loves wind chimes.
22.  Claire does not like to be left alone.
23.  Claire loves a remote control.
24.  Claire weighs 16 lbs 7.5 oz.
25.  Claire is over 6 months post open heart surgery.
26.  Claire is almost 3 months post liver surgery.
27.  Claire is the light of our lives.
28.  Claire loves to be outside.
29.  Claire is getting better about being around strangers, but is still not over it.
30.  Claire is loved by so many.
31.  Claire smiles with her whole face - mouth, nose, and eyes.
32.  Claire has made this girl realize more about life in almost 10 months than I have learned about it in the last 32 years.

Love,
The Scott Family

Thursday, July 28, 2011

Lending a helping hand

This weeks posts have been a little "off subject" meaning not focusing on Claire as much.  I apologize for that and to make up for it, will post a video of her rolling for your viewing pleasure!

video

So now on to business.  Helping others is something I have always loved to do.  I feel it's part of why I was put on Earth.  I may not always be able to help financially or with my time, but I think there are so many other ways that people can help people and I try my best to do that when I can. 

Having a public blog is a great forum for getting the word out to help others.  For example, the earlier post about "Books for Charley".  If we can get even just 10 books donated, we will have made a difference not only in the life of Charlotte's family, but in the life of the child who receives that book while staying in the hospital.  And that's a feel good moment!  DONATE A BOOK (or 2 or 3....)!!!!!  I will take care of the shipping.


Another way you can help without even spending a penny is by voting.  I think there are only a few days left to vote, so go vote now.  Go to this link and it will direct you how to get to the Pepsi Refresh web page so that you can vote for the Whole Hearts Foundation.  http://bowensheart.com/2011/07/11/whole-hearts-foundation-needs-your-votes/  This is a new foundation trying to get a Pepsi grant for $50,000 to help children born with congenital heart defects.  You can vote once a day!


If you are in the New Bern area and want to help, here's another opportunity.  You can help someone, have a good time, and possibly win lots of money!  A benefit is being planned for this Friday, July 29th a the New Bern Farmer's Market for Barbara Crawford.  Barbara has been diagnosed with leukemia and needs a bone marrow transplant (I believe she actually got word last week that they found a donor!!!).  This transplant will be very expensive and Barbara will have to stay in the hospital for several months following the bone marrow transplant.  The event starts at 6:30 pm and dinner will be catered along with musical entertainment.  The tickets are $125 per couple.  The money will go to the Barbara Crawford Foundation to help cover the expenses of the transplant and hospital stay.  A reverse raffle will also be held so by buying a ticket, you are entered for a chance to win $5,000!  Along with raffle items, door prizes will also be given away.   For more information on this event, please call Carla Abee at 252-342-8248 or email at eibeach58@yahoo.com.  Or you can call Ann Blythe at 252-670-9144 or email at annblythe@coldwellbanker.com

Love,
The Scott Family

Wednesday, July 27, 2011

Let's just be honest

I mean, really honest.  I know all of you have seen those commercials lately that say that if you have taken the antidepressants Zoloft, Paxil, or all of those other ones that they could cause congenital heart defects including Tetralogy of Fallot.  And they are trying to get people to call so they can file lawsuits.  The first time I saw the commercial, I thought, wow - I bet people that see this probably think that I took some type of drug that caused Claire to have TOF.  Maybe these commercials have been on the air a long time and I am just now seeing them since they mention TOF.  But still, it just made me stop and think.

So I know if it made ME stop and think, then it has probably made some of you stop and question.  So to be brutally honest, NO I have never taken any of those antidepressants.  Ever.  I will admit I have probably taken a half of a zanax before but that was because I was having chest pains during my MBA final exams several years ago and my doctor said to either take the medicine or have a heart attack.  I will sometimes take a Tylenol or Motrin when I think I am about to die of a headache.  But normally I just wait for it to pass.  I am not a medicine taker.  Never have been.  I used to be afraid to swallow a pill and the first one I swallowed was in college.  I would just chew up the Advil that I had to take.  Talk about yummy!  :(

I would have to say that the most amount of medication I have ever taken was the week I was on bed rest at Duke and all of the medicine they gave me.  That's probably more medicine that I have ever had in my entire lifetime.  Even when I was so sick that I threw up pretty much on my mother in law, the doctor, and the nurse, I was still hesitant to take anything for nausea.  My first question was "will it hurt Claire?"  If so, no medicine for me!  Fortunately, they didn't give me any motrin (or was it Tylenol?) while pregnant due to Claire's PDA valve.  They didn't want it to close and the motrin would have caused it to.  But that was really the only precaution I had to take according to them. 

And folic acid - the vitamin that is supposed to prevent birth defects?  I had been taking that for at least 3 years along with a daily vitamin before we ever started thinking about having children.  I don't do drugs, I don't smoke, and I don't drink (not to say that I never have - I just haven't in a really long time).  I try to eat healthy, although I do like french fries and cake!  I try to walk about a mile or 2 a day - I know it's not much, but hey, it's something! 

I didn't get my hair highlighted or colored while pregnant because they say the chemicals can affect the baby.  I didn't drink any caffeine while pregnant and didn't really drink a lot before I got pregnant because it would make my heart race.  

We prayed to God every day for a healthy baby and a healthy pregnancy.  When asked what gender baby we wanted, we were the typical couple who said " we don't care, we just want the baby to be healthy!" 

So honestly, I did everything I knew of in my power to be sure my body was healthy enough to have a healthy baby.  But you know, sometimes you are just not in control and obviously that has been one of my biggest lessons throughout this entire experience so far.  Before Claire, I was a die hard planner.  Everything was planned.  Now, I am more easy going as I know it was never my plan to begin with.  Most heart moms out there are just like me.   

Were there days that I just couldn't understand why there are moms out there who never wanted their children, did everything in their power to take drugs or harm their bodies and fetuses while pregnant, didn't take prenatal vitamins or have good prenatal care, and still have a healthy baby that doesn't have to endure the struggles that Claire did/does?  You're darn right!  There were days it made me so mad to even think about it. 

But I have learned that God just has a special plan for all of us.  We may never know day to day what that plan holds - and you know, that's ok.  We just have to be open minded and willing to listen to God's plan for us.  It may not be what we always imagined; it may not be exactly the way we wanted it to go.  But it's really not up for us to decide.  I am just happy to have been given a plan from God that includes what it does. 

So before you question or judge people who have children with birth defects, really think long and hard about it.  It could have been you just as easily as it was me.  Just don't assume that these parents did anything wrong - because you know the old saying about assuming....

Love,
The Scott Family

PS - And don't forget about Books for Charley!!!!!!

Tuesday, July 26, 2011

Books for Charley


Who is Charley you might ask?  Charlotte Ritchie was a beautiful little girl.  We did not know Charley, but I found her mom's blog a few weeks ago and have been catching up on it.  I have found a lot of comfort and knowledge reading other heart mom blogs and Charlotte's mom does a great job of keeping up her blog! 

You can read more about Charlotte and her heart journey at http://littlemissritchie.blogspot.com/.  Unfortunately, Charlotte lost her battle with CHD recently and very, very unexpectedly.  Some of her family decided that a way to give back would be to collect new children's books and donate them to the children's hospital that Charlotte went to in her memory - hence "Books for Charley."  The family is placing little heart stickers in the front of each book noting that the books are in memory of sweet Charlotte along with her blog address so others can learn about her and her big heart. 

Of course, Claire (and we) want to help this heart family heal.  And collecting books to send is a way of doing just that.  Children's books are not expensive, so it's a great, cheap way to make a huge, huge difference.  Not only for Charlotte's family, but these books will be handed out to children staying in the hospital.  I know how important it was for us and Claire to know someone cared when we were at Duke for days on end.  Just think about the smiles these books will bring!

So we are reaching out to our blog readers who may want to help!  We would like to collect the books and then send one big box from Claire and friends.  Here are a few ways:

1.   If you have Facebook, you can log on and search for "Books for Charley" to see the event page and read more.
2.  You can purchase books and let me know and I can get them from you. 
3.  You can give me the money and I will go out and buy the books. 
4.  If you have a better idea on how to collect the books, let me know!

Email me at rebeccascott333@yahoo.com to let me know you want to participate!!  Or leave a comment below. 

I know Charlotte's family is making a delivery in August, but they are planning to make one again after that.  So let's set a deadline of August 31st for getting the books to me.  Then if they make another delivery in September, I will be sure the books are delivered for that.  Please help this family.  I cannot even imagine what they are experiencing.  With just a few dollars for a children's book, you can put a smile on their faces knowing their daughter's short life made a difference. 

To help one, heals one. 

Love,
The Scott Family

Monday, July 25, 2011

Wow! What a busy weekend!

This weekend was so busy, yet so much fun!  A whole new journey started for us a year ago this past Saturday (July 23rd).   We already knew we were expecting and on a Friday went to the women's center to find out if we were having a girl or a boy (or having to pay for a wedding or not as Trent described it!).  Of course we found out we were having a girl and were very excited, but then had our bubble busted when the doctor said the ultrasound tech noticed something weird about my placenta and we needed to go to ECU for a level 2 ultrasound.  Little did we know this would be the start of the journey of finding out our daughter would be born with a congenital heart defect as well as a rare liver disease.  In the ultrasound picture below from that day, you can see Claire's feet.  Then to the left of her feet, you see my placenta with all of the black circles in it.  This what the tech noticed thank God!  If she had not, I tend to think we may not have found out about everything in time before Claire was born. 


Claire had fun dressing up this weekend and wearing some new outfits.  Is she not just too cute in the ribbons?!?! 


And of course she had to show her support to momma's alma mater.  With all the changes going on at Peace College (the other women's college in Raleigh), we wanted to show our support to Meredith for promising to remain a women's college. 


Saturday, Claire and I visited the farmer's market again.  She really likes going out there now.  We ran into some of Nurse Marie's family at the market.  They were our connection between us and Marie at Duke.  Marie took care of Claire on her 2nd day of life in the NICU (the first of many days) and my mom recognized her last name as one she knew from home.  She asked Marie if she knew Matthew and Marie said he was her great nephew!  My mom had Matthew in her preschool class and he was one of her favorite kids.  So the connection was made between our families!  Once I figured out who they were, I realized they had been customers of Scott Farm Organics for a few years and also Trent had gone out to the school that Dawn worked at and taught the kids about farming.  So we had met before, but just didn't know where it would lead us one day.  Like I said in a post a few months ago, I believe God puts people in our lives sometimes way before we find out that they were there for a purpose.  We are still so grateful to Nurse Marie and all that she did to get Claire where she is today!

Then we headed over to a church park downtown to meet up with Jenna and her family.  Jenna and I went to Meredith together and she and her husband moved to New Bern a few years ago.  Jenna and I usually run into each other at the women's center in awkward situations!  Anyways, Jenna has 2 children - Jack and Mary Walter.  MW and Claire were due 2 weeks apart.  So technically, in corrected age terms, Claire and MW are both about 7 months old.  So it was interesting to compare Claire to Mary Walter as if they should be on the same developmental levels. 

This was Claire's first time (for me) in a swing.  She wasn't so sure about it and only lasted a few minutes.  She and Jack had fun though! 


We then decided it was too hot to swing and found some shade for the girls to play in.  We had a lot of fun at our official first play date!  We decided next time to have it inside though! 



And Claire did another "first" this weekend!  She rolled from her back to her belly!  And then just kept rolling over and over.  She did it for a while on Sunday.  We better watch out because she will be rolling all over the place.  She no longer stays in one place on the floor.  She is proud of herself and her new trick.  Claire and Fuzz were practicing rolling over together.  He was showing her how to do it! 


Sunday evening, Connor and Anna came over and we all swam for a little while.  Connor and Claire really got to play a little in the pool and they really like each other.  It was fun to see Claire interacting with other kids this weekend.  It's made me realize we need to do it more. 

So needless to say, we are all worn out from a great weekend.  Oh, by the way, Trent and I had a date night out to Chef and the Farmer (www.chefandthefarmer.com).  If you haven't been there and live in the Kinston area, you need to go there.  It is a great restaurant with great food (of course - they use our organic vegetables!).  They use mainly all local foods to prepare their seasonal dishes.  It is a great experience with awesome food!  The chef is a good friend and she just had twins this spring - we can't wait to get them together with Claire!

Love,
The Scott Family

Thursday, July 21, 2011

Waiting game and other odds and ends

As you may remember, we took Claire to Duke in April to have some genetic testing done.   Unfortunately (or fortunately) we have not heard anything back yet and it's been 3 months.  I understand that genetic testing takes time, but 3 months seems pretty adequate.  Duke is supposed to be sending the pathologist in Seattle my blood/DNA, Trent's blood/DNA, and tissue samples from Claire's liver and skin to test for the ABM.  He has been wonderfully patient and understanding and helpful.  I just wish Duke would send the stuff to him! 

Usually I am a pretty patient person, but my patients is somewhat running thin with waiting for these test results.  In a sense, I really want to know the answers.  But at the same time, I really don't want to know.  I have emailed and called again (I am sure they are sick of hearing my name come up!), so hopefully we will hear some sort of update on progress soon. 

On a good note, Claire will be 7 months old adjusted age tomorrow!  Time sure is flying by!  We are truly blessed and thank God every day for Claire.  We try not to take a moment for granted with her. 

Coming up in August, Claire has her 3 month check up with the liver surgeon and her first liver ultrasound since the surgery.  I am anxiously awaiting this visit too with the same apprehensions as above on what the remaining cyst is doing and if any other ones have developed.  She also has a cardiology check up in August. 

Claire was visited yesterday by Maggie and Marcie.  They brought over a bunch of books for Claire's "library" as well as a pink John Deere bag and angel teddy bear.  Claire told me how much she enjoyed their visit!  They even got a chance to hold Claire!  :)

Love,
The Scott Family

Wednesday, July 20, 2011

More July adventures

I have been really busy in the month of July and have the pictures to prove it! 


Granny and I went to Centenary United Methodist Church and played on the playground there.  I had a blast swinging for the first time!  And got to "play" in the tree house.





I also turned 9 months old on July 6th.  Of course, Granny had to put that silly hat on my head again...


I have started being able to sit for periods at a time by myself.  I am getting so much stronger each and every day.


I have been out visiting friends and family.  Here, I am spending some time with my Great Granny Maxine. 




I also watched the very last NASA space shuttle being launched.  It was my first and last!


I decided to sit in my old toy bucket for a while.  I fit quite well!



I have been seeing everyone with these cell phones and want one of my own.  I try to take everyone else's phone all the time.  Granny gives me hers to play with sometimes.  Beware - I may be calling you one day!




Sitting in my old toy bucket was so much fun, I wanted to do it again!  Only this time we added water and I put my bathing suit on. 


These things y'all call Cheerios are disgusting!!!!  What in the world?!?!?!?!


I love to read books (and eat them too).  I can turn the pages all by myself!


I think Granny wants me to learn to use an abacus with this thing.  That's for old people!


I decided to wear my "Daddy's Lil' Lady Bug" outfit and skirt today that Aunt Brandy and Uncle Phillip bought me.  I am just too cute for words!


I also tried out my little rocking chair that Mr. and Mrs. Bullock gave me when I was born.  I fit perfectly!


Don't worry - July is only half way over.  I have lots more to do!

Love,
Claire

Monday, July 18, 2011

Everyday holds a possibility of a miracle

The title of this post is a quote that is on the wall at my sister Julie's house.  She put it on the wall in the room that I stayed in for months after Claire was born as a reminder.  I love the quote!  I thought it was fitting for this post today.  Warning - lots and lots of pictures to follow!

Of course you know from the previous post that we went to visit Eliza this weekend along with Aunt Amanda, Aunt Julie, and Uncle James.  Here are the pictures I took from that visit. 

Aunt Manda and a happy Claire!

Welcome home Aunt Julie!

Uncle James and Aunt Julie are funny!

BFFs and Soul Sisters

Claire wants Eliza's bow

Ok, now they really look like they are fighting like true sisters here!


Claire's wall

Claire also visited with Grandma Neat Neat this weekend and had a blast!  She ate lunch in Grandma's high chair for the first time at her house.  They were both pretty proud of that. 





Then on Sunday afternoon, we had an impromptu pool party and cookout at our house.  We had so much fun and the food and fellowship was wonderful.  Thanks to Candice for fixing so many homemade desserts!  We had about 20 people and Claire did great!  Not one ounce of fussing or anxiety. Maybe we are slowly getting used to crowds....

floating - wasn't a fan of the float this time

Claire and Daddy

She LOVED being out of the float.  She kicked and splashed for a very long time!

Claire and Candy Cane (Candice)

Jace was having a great time in the pool!

FUN!



Daisy wanted to get in soooo bad!  She finally did!

Getting ready for our picnic in the yard.


Claire and Daisy

We tried to capture Daisy giving Claire kisses but we weren't fast enough with the camera.  But Daisy kissed Claire about 50 times!

happy baby!

Daisy liked what was Candice's plate so she took the liberty to eat it! 

Yummy!  Thanks Candice! 

Needless to say, we had a great weekend.  And this post makes me realize that everyday really does hold a possibility of a miracle. 

Love,
The Scott Family