Another Sacred Sunday in the South

This past Sunday, I was honored to be able to attend Ryland's baptism.  My Granny called to see if I would go with her and I was excited to go!  The service was great and Ryland looked perfect and so handsome in dressed in white.  When his parents got up to start the ceremony, Ryland's grandmother got up to sing a song to him.  I just about bawled my eyes out.  She sang so beautifully.  Here are the words to the song:


"Always Be A Child"

I was there when you drew the breath of life
And I could hear your voice
The first time that you cried
And though you couldn't see me
I was very near
And there's something now
That I want you to hear

Chorus
You will always be a child in my eyes
And when you need some love
My arms are open wide
And even when you're growing old
I hope you realize
You will always be a child in my eyes

And I was there the first time that you prayed
And I heard all the promises you made
And when you fell before me
Crying father I have sinned
I picked you up
And held you close again.

Chorus
You will always be a child in my eyes
And when you need some love
My arms are open wide
And even when you're growing old
I hope you realize
You will always be a child in my eyes

Chorus
You will always be a child in my eyes
And when you need some love
My arms are open wide
And even when you're growing old
I hope you realize
You will always be a child in my eyes.

You will always be a child in my eyes.


It just brought out so many emotions and it was so sweet.  I could tell Ryland was soothed by it and quieted down once she started singing.  Just knowing that God is with us always means so much, especially after what Ryland has been through in his few short weeks (almost 2 months) of life.  Of course I had to kiss that sweet head of his with all of that dark hair as we left.  I don't know about other heart moms, but I feel like all heart babies are part of my family.  Like you just have this special bond.  I wish Claire could have gone with us but it was her nap time and I really didn't want to cause a scene at a different church and especially at a special ceremony.  Claire would not have been able to sit still and would have been screaming at me if I would have been trying to keep her still.  So she stayed home and slept 2 hours, which she needed!!

Then we went out to eat seafood to celebrate Grandma Neat Neat's birthday a little late.  Claire did great in the restaurant and when she was done eating, she found the sea gull "decor".  We headed back to Mimi and Grandpa's house to finish celebrating with some cake and ice cream from Piggly Wiggly.   Yum, yum!  I bought the cake with the whipped icing so it's not as sweet and you can eat more (or at least I could eat more.....).  Claire enjoyed the cake before anyone else did by sticking her hands in it and then licking the icing off.  Poor child takes after her Momma on that one (although I couldn't stand the sight of birthday cake while I was pregnant with Claire). 

After the party was over, Trent wanted to go home and take a nap.  So Claire and I rode over to my grandparent's house to visit them.  My Granddaddy had asked me that morning when I picked my Granny up why I didn't bring Claire.  So I figured I would take her back over there to visit.  Claire and their dog Max played ball until Max quit.  He loves to chase a tennis ball and Claire loves to throw it for him.  She kept throwing but he finally gave up.  They wore each other out!

Granddaddy then showed us his fig trees in the back yard and his garden.  I can't wait to pick some figs this year and make some fig preserves and fig bread.  It's been a while, but I hope I can do it this summer.  Claire also stopped for a few seconds to swing with Granny and Granddaddy (long enough for me to get one picture). 

Claire and I went home and played with Daddy for a while and had leftovers for supper - and of course, more birthday cake (you would think it was my birthday with all the cake I ate!).  Perfect ending to a perfect day.  You don't get any closer to another sacred Sunday in the south than church, babies, family, seafood, birthday parties, cake, fig trees, backyard swings, and love. 

Love,
The Scott Family

Farmer's Market 2012

Saturday was our first day back at the farmer's market selling our organic produce.  We didn't have much, but it's good to get back in the swing of going while customers learn you are back.  And not have to bring a whole lot back home with you!  Claire and I stopped by for about an hour.  She was happy as long as she could run all over the place!  But with people and cars all around, I had to try to contain her.  And that did not make her happy. 

Love,

The Scott Family

PS - And today is the day Dr. Rachel finds out if she will get to stay at Duke and do her fellowship there as pediatric cardiologist!  We know she will get good news!

Congratulations Aunt Amanda!

Aunt Amanda will be attending nursing school in the fall!  Congratulations!!!  We are so proud of you!  And we definitely need a nurse in the family....

This is also the last week to collect books for "Books for Charley."  We are up to 94 books!  Not far from our 113 goal!!!!

Love,
The Scott Family

New habits

Claire has some new "habits" she has started.  One is to come home almost every afternoon and clean out my Tupperware cabinet onto the floor.  It keeps her occupied for a little while so I can cook supper, and it won't hurt her, so I don't mind.  The lids and containers never match up anyway at our house. 

The second habit is not as much fun.  If you look closely at the birthday picture below, you will see that Claire has found her nostrils.  So now she walks around with her finger stuck up her nose.  It's gross, but she doesn't understand what she is doing.  I think she just realized she had 2 holes on her face that she could stick her finger in besides her mouth.  Let's hope this habit is a quick phase! 

Love,

The Scott Family

Happy Birthday Grandma Neat Neat!

Today is Grandma Neat Neat's birthday!  We started the day off by dropping her handmade present from Claire off first thing this morning.  We then cooked hamburgers for supper and enjoyed a birthday brownie with vanilla ice cream!  Hope we made her day as special as she is!

Love,
The Scott Family

19 things

I know this is a little late.  It should be more like 19 things at almost 20 months old.  But let's see how it goes when I try to come up with 19 things about Claire at 19.5 months of age:

1.   Claire loves it outside.  If you open the door, you better be ready either to take her outside or be ready for a meltdown.
2.   Words Claire can say include hello, bye, bye bye baby, bye bye ma ma, DA DA, horse, ball, milk, juice, Elmo, bear, Mi Mi, Penny, baby, yummy, thank you, apple.  She can say many more, but these are the usual ones.  She also babbles a lot lately so she is trying to say new things.
3.   Claire imitates a lot of what we do now.  If we yawn, she yawns.  If I say "no", she says "DOE" really loud.  She copies the noises/sounds we make.  Tonight she has started saying "um".  So I wonder if I say that a lot??
4.  Claire still loves Elmo and gets super excited whenever she seems him.
5.   Claire's curls are multiplying and are crazy cute.
6.   She doesn't like spaghetti anymore. 
7.   Claire will not eat vegetables.  Just fruit.
8.   She still loves to read books.  And she reads them the correct way.
9.   I still have to sing "Old MacDonald" pretty much every night and according to Claire, he only has chickens on his farm.
10.  Claire has 14 teeth with 2 more on the way.
11.  This is the summer of skint knees for Claire.  I think today makes about the 4th or 5th time this summer so far.
12.  Claire still drinks from a bottle.  She has no interest in a sippy cup.  She likes to drink from a real cup but makes a huge mess. 
13.   I still rock Claire to sleep every night.  I hope this continues for a while.
14.  Claire basically runs everywhere she goes now.
15.  Claire "quacks" every morning on the way to my parent's house.  I have discovered it is in the same location on Hwy 17 every day.  I noticed she does it when we drive by a yellow house with pink flamingos in the yard.  Not sure if she is quacking at the pink flamingos or the yellow house.
16.  Claire has a mind of her own (she always has).  She lets you know if you are not doing something the way she thinks you should be doing it.
17.  She dances to music a lot more now.  And this weekend she seemed to be "singing" along with songs on TV. 
18.  Claire is wearing a size 5 shoe, anywhere from 18 month to 2T clothes, and of course a hair bow every day.
19.  Claire loves to waller.  She gets super excited when you put her on our bed and she can just roll and waller all over the place.  It is like her "happy place"!
19 1/2:  Bonus - Claire is the answer to so many prayers.  She is the perfect gift from God above.  We love her more than words could ever describe.  We thank God every day for blessing us with Claire. 

Love,
The Scott Family

Books for Charley update



This past weekend, Claire and I visited a local book store to pick out some books for the "Books for Charley" collection.  Claire immediately pulled a Baby Einstein book about farm animals off the shelf, sat down promptly in the floor, and began to read it.  Too cute!  Then she got up and migrated to the back of the store with the magazines, sat back down, and read some more. 

We picked out a few books for donation before we had to leave (before Claire started pulling lots of books down and running through the aisles).  And of course, Claire had to keep her book that she picked out.  This girl LOVES books! 

As of today, we have collected 43 books and have received $100 in monetary donations to buy more books.  I am super excited and we are working towards our goal of 113 books!!  (113 is the number of days Claire was in the hospital total)  Thank you to all of you who have donated!  There is still about 2 weeks left to get books or money for books to us.  These small gifts will definitely help brighten a child's day.  

Love,

The Scott Family

Around the shop

This past weekend, Claire and I hung out at the shop with Daddy.  She loves it there.  As soon as we pull up in the driveway, she starts yelling "DA DA!" 





She chased Kit Kat all around the tractor and thought it was fun!  You can kind of see Kit Kat between Claire and the big tire. 

Claire also "jumped" up in Trent's tractor with a little assistance.

And then Kit Kat and Claire played hide and seek under the stairs to the cooler.  You can see the kitty run under the steps and Claire trying to find her.  She also says her version of "kitty kitty" about 3/4 of the way through in a sweet voice.  I just laugh and laugh everytime I hear her giggle.  So pure. 

I'm glad we got this video because, unfortunately, Kit Kat was hit on the highway we think sometime on Sunday.  :( 

Love,

The Scott Family

"She's boring"

To any parent of a preemie child with congenital heart defects and liver disease LOVES the words - "She's boring."  That's exactly what the geneticist said yesterday at Duke.  We had a follow up appointment just to be sure Claire was not showing any signs or symptoms from the Androgenetic Biparental Mosaicism and/or Beckwith-Wiedemann Syndrome.  Claire shows NO signs of anything except a healthy toddler! 

The geneticist had done her homework and knew what to look for.  She said with BWS, it would be obvious if Claire had that.  And there is nothing showing Claire has BWS.  And the ABM is so rare/new, they will just continue to research and follow up. 

We don't have to go back for 18 months!  Thank God! 

We visited with Aunt Amanda and Uncle Colby and the dogs.  Claire did awesome on the drive up and back.  She is growing up so fast!  I think we watched Elmo DVDs for 3 solid hours. 

We also got to visit a few minutes with Dr. Rachel while we waited for our appointment.  We love her!  And Claire and I read a few books while waiting for the doctor.  They let us wait in the lobby since they quickly realized how Claire was terrified of the offices!

Love,
The Scott Family

Mother's Day Traditions

Someone at worked asked me the other day if my family had any Mother's Day traditions.  As I tried to answer, I drew a blank.  What did we usually do?  Why couldn't I remember?  What had we done the past few years? 

After I stopped and thought about it, I realized that the past 2 Mother's Days have been different.  Mother's Day 2010 we announced that we were pregnant!  Below is a picture of me after we just told Trent's family and his cousin had a sneeking suspicion, so she had the cute onesie ready!  

Fast forward to Mother's Day 2011.  Claire had just had her liver surgery and we were hanging out in the PCICU at Duke.  I had begged the doctor that day to keep Claire in PCICU one more day (as I felt more comfortable with the nurses in there rather than out on the floor).  She made me a deal that since it was my 1st Mother's Day, she would let Claire stay there until Monday.  BUT I had to leave the hospital for a few hours and go eat lunch for Mother's Day.  So we had a deal. 

This Mother's Day, it was a drama-free, hospital-free day.  Just a day to spend with Claire and family and our mothers.  Just a simple day was perfect.  I hope to start new traditions.  We went to church, ate lunch with Trent's family, and supper with my family.  It was a nice day!  I can't say that I didn't shed some tears just being so thankful to be a mother and especially to be Claire's mother.  What an honor. 

Here is a picture of Claire at church on Mother's Day.

Hope everyone had a great Mother's Day!

Love,
The Scott Family

18 month well baby check at 19 months

We are a month behind for Claire's 18 month check up.  She was really sick during her 18 month time frame so we moved it back to 19 months.  She did a lot better today than she normally does at the doctor.  By "a lot better" I mean she didn't hyperventilate the entire time.  Just part of the time.  When the doctor was in the room and just talking to me, she was fine.  She walked around the room, opened and shut the cabinets, etc.  But as soon as the doctor put her stethoscope on, Claire freaked out.  I am seriously considering seeing if I can buy a cheap stethoscope somewhere so we can "play" with it together and get Claire familiar with it so she knows it will not hurt her. 

She got 1 shot today and hopefully that is the last one for a while.  Claire passed the autism screen. 

And our doctor must know I love charts, graphs, and numbers.  Because today she came in with 4 growth charts showing Claire's growth and percentiles since birth.  This is talking in my language!  I  wish I could get these things every time.

These numbers are all based on Claire's "real" age of 19 months, not her corrected age.  As far as Claire's "recumbent length" (meaning her weight vs. her height), she is in the 98th percentile.  So in basic terms, she is short and chunky.  Weight for age, Claire is in the 90th percentile.  Length for age, Claire is in the 34th percentile (meaning she is short).  And head circumference for her age, Claire is in the 84th percentile. 

The doctor said Claire looks GREAT!  And that we can keep doing what we are doing.  That was a relief.  We are working on changing her from whole milk down to 2% then to 1% milk.  And we also need to work on getting her off of the bottle.  But in the big scheme of things those are minor. 

Claire weighed 27 lbs 3 oz and measured 31.75".  Her doctor said that in a few years she and Claire will be sharing secrets about Claire's boyfriends.  Whew - I hope that is in SEV.ER.AL years!  :)

Love,
The Scott Family

Beautiful life of baby Conner

Please continue to pray for baby Conner's family as they learn life without him here on Earth with them.  They had his funeral yesterday and played this timeline video (link below) there.  Be sure to have a box of kleenex with you when you watch this.  I bawled like a huge baby. 

Caroline and her family want to spread Conner's story and share with others their faith in God through this whole journey.  Please feel free to share her blog and Conner's story with others. 

http://www.youtube.com/watch?v=i_LMk_6go_U&feature=share

This family has such strong faith and I admire them for that.  Conner's story also reminds me of how many babies are born too early and do not make it.  It makes me want to squeeze my "born too early" baby and never let go.  Never take life for granted. 

Love,
The Scott Family

Charley's Heart

Each book that is donated for "Books for Charley" will have this special sticker placed in the front of it in hopes of bringing awareness of congenital heart defects to others.  And also to let others know how special Sweet Charley is to so many.  This baby, although no longer on this Earth, is still touching lives and advocating for heart babies around the world.

So don't forget to send some new children's books our way!  We have a long way to go to meet our goal of 113 books!!!

Love,
The Scott Family

Dancing chickens and tractors

Claire dug out one of Fuzz's dog squeeky toys - a chicken.  She has been toting it around and saying "chicken"!  She loves Old MacDonald and dances to the music every time.  Now she makes the chicken dance to the music!

She also loves to watch her Daddy on the tractor!  As we were driving by him planting cotton, Claire immediately knew it was him, so we had to stop.  I couldn't let go of her hand because our road is big gravel so she was wobbly walking.  So the video is not the greatest, but you can hear her yelling for Da Da!

Please excuse the shaky videos.  It's hard to hold on to Claire and video at the same time.  Also, it's hard when you are dancing to the music in the chicken video to keep the camera still...  :)


PS - Don't forget May is "Books for Charley" month!!!!


Love,
The Scott Family

Alumni

We bought Claire this t-shirt at the reunion this weekend.  It is just too darn cute on Claire!  She is definitely an alumni of the Duke ICN! 

PS - Ryland was able to finally come home Monday afternoon!!!

Love,
The Scott Family

What a difference a year makes



This was Claire one year ago May 5th.  She had just been through major abdominal surgery.  This picture is probably an hour or two after she had surgery.  The surgeons removed 75-85% of her liver, removed her gall bladder, removed her appendix, and repaired 2 inguinal hernias in her groin.  Claire was only 7 months old.  This was Claire's 3rd major surgery.  Some days it seems as thought it has been forever since this picture.  Other days, I remember it like it was yesterday.  Even looking at this picture now, it's hard for me to grasp that this really happened and that this is our baby girl. 

Fast forward 1 year.  We found ourselves right back at Duke Hospital exactly 1 year later.  Except this time we were there for "fun" and not surgery or doctor's appointments.  We went up to Duke to do some visiting and to attend the annual NICU reunion.  First we found the fish tank on 5th floor on the way to visit Ryland.  Claire liked the fish!  And the chicken painted on the window behind me.

We headed down to Ryland's room and busted him and his momma out!  I unfortunately know how small those 4 walls can be in those rooms and Robin was looking for a good reason to get out.  So we walked back down to the fish tank to take some pictures and catch up.  I wasn't sure how long Claire would last so we tried to get pictures right off the bat.  As you can see, Claire was not interested in pictures.  She wanted to just run around. 

Here is a cute of on Claire looking on at her cousin Ryland.  She (and we) is so proud of him.  I think she whispered to him a few heart baby secrets...  We talked about how much of a miracle child Ryland is.  Ninety percent of children with interrupted aorta like he had die by 4 days of age.  He was 11 days old when they found his.  And it was all due to his momma's instinct that something wasn't right.  If she would have waiting even 2 more minutes, things may have been a lot different. 

It was great visiting with them again. We are praying Ryland can come home soon.  Then maybe we can have some fun play dates!

We then headed down to the reunion.  Claire kept running out of the door outside.  So she found some older kids playing basketball on "Coach K's Court" by CHC.  I think she would have been content playing out here all day.

 Here are our best attempts to get a picture of the "roomies":  Heather, Eliza, me, Claire, Remi, and Christin.  These girls started out together in the NICU and will be forever friends.  It's so crazy to see how big they are now!  My heart gets so big looking at these miracle babies.  They make me proud!

See how Claire is a blur?  Basically that is how she looked the whole time.  Non-stop running around CHC.  We were worn slam out chasing after her.  I was supposed to work the Album of Hope table and I never got to do it.  I had even brought stuff to make a page for Claire and had to bring it back home.  Maybe I can make a page and take it in at a later date....  I really wanted to add her page to the albums. 

We met up quickly with Nurse Marie but didn't get a picture.  She was working the registration desk.  We did get a chance to sit down and visit with Nurse Susannah a little bit.  She is getting married in a few months so we had to get the skinny on the new guy.....

Nurse Charity was working in the NICU but took a few minutes to run down and visit.  It was good to see her too as we haven't seen her since we left the NICU.  Nurse Charity always said Claire woke up with her hair on fire in the NICU.  She really liked her hair today!

Unfortunately, we were unable to meet up with Dr. Rachel.  She was working the NICU and we were getting ready to meet up when Claire fell and scraped her knee pretty bad (see bandaid below).  So it was time for us to hit the road.  We were so disappointed.  :(  But we are going to be sure we catch up with her on one of our upcoming appointments.

I had also planned to visit Caroline and her family, but that didn't work out either.  I really wanted to at least say hello and hug her neck.  But Claire dictated that it was time to go. 

We did get to take a pit stop at Aunt Julie and Uncle James' house and eat lunch with them and Aunt Amanda and Uncle Colby.  It's nice to have family up there.  We hit the road before the storm hit and Claire really enjoyed watching Elmo on her DVD player.  She got a good nap too on the way home!

Love,
The Scott Family

Grab the tissues

Below is the link to Conner's blog.  His mom wrote a beautiful post about his short little life.  I am amazed at this family and their faith and trust in God.  It makes us all stronger just by reading their story.  Please continue to pray for this family.


http://connercombs.blogspot.com/2012/05/conner-wayne-combs.html


Love,
The Scott Family

Feature Story

Claire was featured on Charlotte's blog yesterday!  Check her out!!!

http://littlemissritchie.blogspot.com/2012/05/meet-claire.html

A year ago today, Claire was undergoing her major liver surgery (along with gall bladder removal, appendectomy, and repair of 2 herinas).  More on that to come!


Love,
The Scott Family

Prayers for Conner's family

Please pray for baby Conner's family.  He went to be with Christ Jesus early this morning while in his parent's arms.  Pray for peace, comfort, love, understanding, and for them to always remember his spirit and how he changed so many lives in his short little life.  They needs lots of prayers during this time. 

I borrowed this picture of sweet Conner from Facebook.

Love,
The Scott Family

That kind of day

This is the kind of day it was today.  I ate a whole Snickers bar and had to take a Motrin.  If you know me, neither of these things are my "norm."

It started out by me having another nightmare last night.  The night before I dreamed Claire had to have open heart surgery again and I had to open up her scar and take steri-strips off as I was bawling.  Then this morning I woke up to dreaming that we had to put Claire back on oxygen.   Talk about a head ache when I got up.

I got out of a meeting at work and found a text from a friend telling me she thought Caroline was having baby Conner today at 26 weeks.  After researching on Facebook, we found it was true and she was in a c-section.  I started shaking all over and freaking out.  I don't know Caroline really, really well, but I think us mom's of preemies, heart babies, liver babies, etc. have an instant connection.  A bond like no other and needs no explaination. 

So it was like reliving the emotions all over again.  I know the terror Conner's family was/is going through.  He was born weighing 1 pound 3 ounces.  The last I heard was he was "stable" and on a breathing tube with surfactant to help him breathe as he is not breathing on his own.  Please, please pray for them!!

The rest of the day was ok until I was putting Claire to sleep.  I noticed we kept getting hotter and hotter.  My eyes started stinging and she was sweating.  I went and checked the thermostat and it was set on 70 but it was 80 in the house.  Great!  Our air conditioning has quit on the hottest day so far at 90 some degrees! 

I think I need another Snickers bar......

Love,
The Scott Family

Matter of opinion

I spoke to a health care professional today that was concerned that Claire's weight was somewhat high for her.  It kind of took me back because we have fought so long for her to gain weight.  Now it is a concern that she has gained too much weight?

So I called her regular pediatrician to see what she thought.  She said that at Claire's highest weight, she weighed 26 lbs 4 oz on March 29th.  She said that in January 2012, Claire weighed 23 lbs.  So she has gained 3 lbs since January.  Which is really not a huge deal.  She is in the 80-90th percentile for weight and she has been at that percentage for a while now according to the pediatrician.  She said while Claire is a little on the "chubby side" she is not "overweight." 

She knows that Claire eats a very healthy diet, does not get junk food, and she gets just the right amount of milk and juice a day.  She is VERY active, so that is not a concern.  We went over all of the medical things that could be going on with her liver or heart and do not think they are the culprit of weight gain.  She did say that at 8-9 months old, Claire was in the 1st percentile for height and now she is about in the 20th percentile.  Which she wasn't concerned about due to the short family genes. 

She thinks Claire has just had a growth spurt and that it is not concerning right now.  We may decide to change over from whole milk to a lower fat/calorie milk sooner than later though. 


As far as what was on my mind in the post a few days ago, I asked her about that too.  Basically when Claire was sick a few weeks ago, we saw a different pediatrician that we had never seen before.  I got copies of Claire's records to take with us in July to the GI doctor and was reading over them.  I noticed that this pediatrician that had never seen Claire commented about her "unusual faces" that she made that were pretty much due to the "genetic syndrome" that she had.  What genetic syndrome does she have?  Good question!

I was kind of upset about this note.  And then concerned that I was missing something.  What kind of faces did she mean?  I mean, Claire was there getting cathed and blood drawn.  I can imagine what my face would look like.  Anyways, I couldn't decide whether to ask or not.  So while I had our regular pediatrician on the phone today I thought I would ask. 

"Am I in denial?" I asked.  Meaning is there something someone has told me and I just didn't hear it?  Was I missing something?  "No, you are not."  Basically she thinks that the new doctor meant that Claire has facial characteristics of kids with heart defects.  That heart babies/TOF babies all kind of have the same facial shape/features and have "classic faces" of heart babies. 

This is the first I have ever heard of this.  I am curious if any other heart/TOF mom  has heard of this???  Please tell me!  She told me I could Google it and probably find info on it but I haven't seen anything. 

There were some other issues in the medical record that I didn't bring up today and probably should have about that visit.  Maybe another time....

Love,
The Scott Family

Books for Charley collection starts today!

May is collection month for Books for Charley!!  Many of you were so kind last year to donate children’s books for this great cause, and we are hoping you will want to do it again this year. 

For those of you who don’t know what Books for Charley is, Charlotte passed away last May due to her CHD.  Although we never were able to meet Charlotte, she and her family are considered friends.  We found Charlotte’s mom’s blog last year right about the time things went bad and have kept in touch with them ever since.  Many of Charlotte’s friends and family decided to collect books last year and to donate them to the hospital that had taken such good care of Charlotte.  People from all over collected over 1,000 children’s books that were donated!  The heart children who are at Charlotte’s hospital or cardiology clinic get to have a book.  It’s a nice way to honor Charlotte’s memory, bring a smile to these children’s faces and to bring awareness to CHD. 

This year, Charlotte’s mom asked if we would like to donate the books that we collect to Duke in honor of Claire and in memory of Charlotte.  Of course I was super excited and said yes!  So the books that Claire collects this month will all be donated to Duke Children’s Hospital and to the PCICU at Duke (Pediatric Cardiac Intensive Care Unit) where Claire spent a lot of her first days and months. 

So please, consider donating any children’s book or 2 or 3!!  You can drop it off at any of our houses, call us to come pick it up, or whatever it takes to collect a bunch of books!  If you do not want to shop for the books, I will gladly take a monetary donation and go shop for the books for you.  I think we collected about 50 books last year.  My goal is to collect 113 books as this is the number of days Claire spent in the hospital (99 NICU, 7 for heart surgery, and 7 for liver surgery).  Not sure if this is feasible, but it’s something to shoot for! 

Charlotte’s family has also just created a wonderful website in her memory and launched it today!  You find it at www.charleysheart.com.  It tells Charlotte’s story, projects that her family and friends are doing in her memory, and also is a great resource for CHD families.  Check it out!

Love,

The Scott Family