Wednesday, October 9, 2013


Or for those of you who did not grow up a teenager in the 90's - TTFN = Ta Ta For Now.
I've been meaning to post this for a while now but just haven't brought myself to do it.  I love this blog.  I love what it stands for, what it has documented, what it means in Claire's journey.  But Claire is now three years old and busy as ever.  Therefore, I just don't have the time to journal here anymore.  That's not to say I never will again, but right now, I am leaving the blog on the shelf for a little while.  It's very bittersweet!!
I want to leave everyone with a glimpse into our life right now..... Isn't she beautiful?


The Scott Family

Wednesday, July 31, 2013

Books for Charley - 2013

This year we participated in the “Books for Charley” book drive again for Duke’s Pediatric Cardiac Intensive Care Unit patients.  We were able to collect 46 children’s books in total for the kids!  The books ranged anywhere from baby board books to Dr. Seuss books to books about farms (you know we had to throw some farm books in…..).  We were super excited to participate again and be able to brighten 46 children’s day with a new book to read or to have read to them.  

We delivered the box of books at Claire’s last appointment for her liver checkup.  I was in such a stir worried that Claire’s appointment would go like her cardiology appointment went back in May when she just had meltdown after meltdown.  So as soon as we go to Duke, I dropped the box of books off at the information desk for the child life specialist to pick up.  It wasn’t until later that day did I realize I never took a picture of the books!  My nerves had the best of me that day I guess! 

But the child life specialist sent us a special thank you note, so I thought I would post it instead.  It just warms my heart to know that we help keep Charlotte’s memory alive by warming the hearts of other children and by spreading awareness of Congenital Heart Defects.   

Thanks to the Ritchie family for allowing us to be part of this wonderful event again this year!! 
The Scott Family

Tuesday, July 30, 2013

34 Things

Haven’t done this in a while, so here it goes!  Claire is 2 years and 10 months old which is 34 months old.  I am going to try to write 34 different things about Claire at this age:


Claire is a VERY (extremely) picky eater.  On her menu each day are the same items – pancakes, Cheerios, raisins, Gerber puffs, bananas, Pop Tarts (her new favorites – chocolate fudge and strawberry).  That is about it.  Seriously. 


She ate a plate of French fries at Outback for my birthday dinner.  Almost the entire plate.  She is starting to love French fries.  Definitely gets that from her Mommy.


At night as I am putting her to bed, she asks for a “tiss” or a “buff-fly tiss” about 100 times as she has learned that I cannot refuse her any kisses or butterfly kisses, and I will keep coming back into her room to give her more on demand. 


Claire loves water.  Anything to do with water except to drink it.


She actually played in the sand for the first time ever at the beach last weekend.  Normally sand is not her thing.


I have still not cut Claire’s hair.  Not sure I ever will.


Claire’s favorite shows in TV are The Pajanimals, Elmo, and Wheel of Fortune. 


Claire still loves music!  She can remember and sing songs very easily.  We currently have to listen to a Disney Princess song CD every day in the car and she is starting to sing those songs a lot.


When I get Claire out of her crib in the mornings, she greets me with either “Good Morning!!!!” or “Hey Suga!” (pronounced “shu-gah”  - Southern for “sugar”). 


Claire is OBSESSED with her Nook.  She has to play with it every day.  She loves the animal flash card app and the books that read to her including Rapunzel and some Candy Factory book.  OB.SESSED.   I compare this to the obsession we all had as kids when Gameboys came out with Tetris.


Claire will “eat” several apples a week.  When I say “eat” she bites the apple and chews it up then spits it out.  Or either just bites around the apple without biting off any pieces.  The apples do not go to waste.  Jack, our donkey, gets them as a treat!


Claire can operate my iPhone much better than I can.  She can even take pictures of herself.  So if you receive a random picture text or a hang up phone call or a random Facebook post, it’s probably from Claire.


Claire calls my mom “Franny” (Granny), my dad “Pig Daddy” (Big Daddy), and Trent’s mom “Ranma” (Grandma).  She still calls me “Mommy” and Trent “Da Da”.


We currently have about 15 pigs in our front yard.  They are not ours – they are just temporarily living there as a favor to some friends.  But we are really enjoying them!  Claire has a favorite one she has named “Potty” (Spotty – because he is the only one with black spots). 


Speaking of potty, Claire is still not potty trained nor does she show any interest. 


She is going through a phase of separation anxiety where she is always fearful I am going to leave her.


Did I say that Claire loves animals? All types of animals.  We even have to stop and pet other people’s dogs on the beach and tell how “soft” they are.


Claire’s new game every night is to sit on the twin bed in her room and throw all of the stuffed animals off onto the floor to me.  Then I she lays down on the bed and wants me to throw all of them back onto the bed on top of her to make a big pile.


Claire still weighs about 30-31 pounds, wears anywhere from a size 3T to 4T, and wears a 6.5 size shoe.


We are finally done with bottles!!!!!!!


Claire loves routine and repetition.  Does not like change at all.


Claire has learned how to swim with her swimmies on.  She can float around and turn in circles.  She still has a long way to go to actually be swimming but I can let go of her in the pool now and swim together.  She loves going “swimmins”.


I am reminded of what words or phrases I must say a lot.  Now when Claire whines or fusses, she answers herself when I don’t and asks her self “what’s wrong?”


She still does not like to sit in your lap and have a book read to her.  She does not have time for that. 


Claire is going back to preschool again this year.  She will (I think) be the oldest in her class again.  It will probably always be that way unless a September baby gets in her class…


Claire still has really sensitive skin and can only use Aveeno products. 


She has a beanie baby dinosaur she has named “Leelo” or “Lilo”.  Not sure how she spells it. J


Claire can speak in a British accent.  No joke.  Her Nook has a few apps that have a British person saying the words on the flash cards.  So instead of saying “car” like I do, she says “caaah”.  Or instead of saying “scooter” like I do, she says “scootah”.  Or “rooster” is “roostah”.  You get it.


Fire trucks are still one of Claire’s favorite things.  Tractors come in a close second.  Does this mean she is going to marry a farmer/fireman like I did?  J


Claire touched a real fish for the first time at the beach last weekend.  Some man caught a flounder and she ran up and touched it.


Some of Claire’s favorite songs besides the Disney Princess songs, are “Rock A Bye Baby”, “I Love You, A Bushel and A Peck”, “You Are My Sunshine”, “Old MacDonald Had a Farm”, “BINGO”, “Jesus Loves Me”, “Wheels on the Bus”, “If You’re Happy And You Know It”.   And she can sing all of them.


Claire is still a Da Da’s girl.  She listens to everything he says and watches everything he does with awe.  I, on the other hand, must not be that interesting – except when she thinks I am going to leave her somewhere.


Claire can count to 14 and still say all of her ABC’s.


At this point in Claire’s life if I had to predict what she is going to be when she grows up, I would have to say possibly a veterinarian, a 4-H agent, a musician, or an Olympic swimmer or runner. 

This has been the best 34 months of our lives.

"Potty" is the one on the far left
Loves a pool
Beach girl
Loves a firetruck
A girl and her Nook



The Scott Family

Wednesday, July 24, 2013

Forgetful - liver ultrasound update

Life happens and you forget things.  I seem to have forgotten very important things  - one in particular. 


Claire had her liver ultrasound 2 weeks ago at her Duke checkup.  Preliminary results were good as we found out when seeing the hepatologist after the ultrasound.   I kind of forgot about asking for the final results until yesterday.  I went online to the portal Duke has that usually posts all of the test results and everything.  Still no final result.  I remembered they were in the process of switching over to a new portal so I am figuring there is a longer lag to post radiology results.  So I just called the nurse. 


When she returned my call, she said everything looked good on the ultrasound.  The right side of Claire’s liver that is regrowing looks good.  Then she said “There is one picture that shows a residual piece of hamartoma.”  “What?!  Where did that come from?!  Did they measure it? What size is it?”  These were my questions.  The nurse said the doctor was not concerned about it and that it was probably just left from the surgery.  They didn’t even measure it so it was not significant. 


Well it is to me!  AHH!  So I started freaking out.  I went back to all of Claire’s old radiology reports and read through them.  Then it hit me.  They did leave 1 cyst on the left side of her liver during the surgery.  I remember the surgeon saying they couldn’t remove it because it would have taken too much of her remaining liver on the left side.  So since it was really small they were leaving it and going to watch what it did. 


Ok, ok.  So I am assuming this “residual” that they saw on the 1 picture is that cyst that the surgeon had to leave.  How could I have forgotten that?  How did I forget there was a cyst left in there?  I am thinking I probably pushed it out of my brain so I wouldn’t worry about it.  I have replaced those fears with fun memories I guess.  Which is a good thing!  But it scared me for a minute.  And then brings back those fears of “oh yeah, there still is a cyst in Claire’s liver we will have to watch….. forever.”


I am still waiting to read the entire final radiology report whenever it gets posted.  Until then, I will just keep cramming new, fun memories in my brain!  It’s more fun that way!
The Scott Family

Monday, July 22, 2013

First time swimming!

Saturday Claire was really into watching Layn swim.  He had forgotten his swimmies so he used Claire's since I usually hold onto her anyways.  She really took it all in with him swimming.  I talked to Amber and she said Layn had taught himself how to swim with these same swimmies and that I just needed to tighten up the swimmies and Claire would be ok.  

Layn flying through the air!

Curly headed friends (whose parents are already setting up a prearranged marriage, haha)

Jax catching some rays!


So Sunday, I did just that and Claire took off swimming all by herself!  She was kicking and doing a little bit of arm movements and spinning around.  We got a little video (below) for evidence!!  She really is a water baby.  We are so proud of her!

The Scott Family

Sunday, July 21, 2013

Summer Fun

We have been continuing to work hard on our summer adventures!  Here are a few things we have been up to.  I would have more pictures but I cannot figure out how to save pictures from my iPhone and rotate them correctly.  So all the other ones I wanted to post were sideways!  Ugh.  So here is just a few.

We went to Marbles Museum with Aunt Julie and Aunt Amanda.  Claire LOVED it!  She especially loved the ambulance exhibit.  Weird, yes I know.  I think it was the lights.  She also loved the farm exhibit and the water exhibit.

 We had friends over to play including cousins Connor and Anna.  Is it not obvious to you too that these 2 girls look a lot a  like???

Aunt Amanda took Claire to a local splash pad and she had a blast!!!!!

And friends Layn and Jax came over this weekend to swim in our pool and then go play at Chick Fil A.  Claire and Layn had fun swimming and splashing while Jax looked on from the deck.

We are continuing to try new things and have fun!  Claire LOVES water and animals.  Maybe I will be able to figure out this iPhone picture taking soon so I can post more pictures!

The Scott Family

Thursday, July 11, 2013

Annual Liver Check up

When Duke called and wanted to schedule Claire's liver ultrasound for 8 am this morning, I thought I would cry.  I realized that they were doing this because she had to be NPO before the ultrasound meaning no food or drink after midnight so they scheduled her first so she could eat right after.  My concern was how were we going to get up at 4 am to drive to Duke without her begging for food or drink for 4 hours.  That's when Jax's parents reminded me about the Ronald McDonald House. 

I never got to stay at RMH when Claire was at Duke.  Other family member stayed there and really liked it.  But since then they have completely renovated the old part and built a brand new part.  I had been and cooked breakfast for families there so I had seen parts of it. 

We were on the waiting list all week until yesterday afternoon we heard we got a room!  We really were not sure what to expect.  We didn't get there until 9 pm last night and were exhausted.  But when we got in our room, I was so happy.  It was beautiful!  I am pretty sure we probably got a room meant for a long term family but they were completely booked so maybe they let us stay in there?  It had our own bathroom (we were expecting to share bathrooms with other families), our own washer and dryer, shower, oven, stove, microwave, dishwasher, refridgerator, bar, couch/seating area, little dining area, 2 double beds, a dresser, and closet.  I was in awe.  And all they ask is $10 a night from families and if you cannot afford it, you do not have to pay.

We also dropped off about 40 pounds of pop tops.  This is about 52,000 tabs!!!!  Thanks for all of your help!

This really opened my eyes to how important RMH is to families like ours.  Fortunately, we had family close to Duke so when Claire was up there we were able to stay there for extended times.  But for people who don't have families close by, RMH is awesome.  It is so home-like.  And comfortable.  And safe-feeling.  I can so see us there fiding respite during all of Claire's hospital stays.  I am so glad we were able to stay there.  We will probably be doing it again next year for her annual liver ultrasound!

Here are some pictures from RMH and our room:

Then I was worried about how Claire would react at the appointment.  It has not been long since her cardiology appointment where she had complete and total meltdowns the whole time.  But this time was totally different!  We ran into Dr. Rachel as we were walking into the ultrasound.  I believe she brought us good luck because Claire did awesome!!!!  We didn't plan to meet any friends up there today after knowing how she reacted at her heart appointment, so it was a coincidence to run into Dr. Rachel.  She was busy so she had to run, but we did get to hug her neck. 

AND her preliminary ultrasound results looked good.  The Nook, toys, and phones - plus the really sweet techs - made it all work.  Thank God!!

Here's a cell phone picture of Claire getting her ultrasound. 

So we will go back again next year and I hope the experience is just as good. 

The Scott Family

Monday, July 1, 2013

Flower girl - take two

This past weekend, my brother married his best friend.  We had a blast at the wedding and reception!  Claire, once again, was one of the flower girls.  I fretted as to how she was going to get down the aisle this time as I was not walking her down.  But she did perfect and followed the older flower girl right on down the aisle with Cheerios in hand this time!  She stopped mid way of the aisle, put her hand in the air and yelled something like "yay!" then kept going.  Trent and I were SO proud!!!

Here are some pictures from the day:

Getting ready

Love those curls

me and my girl

Flower girl and bride

My beautiful new sister in law


You know we had to have our picture taken with the antique tractor

"Happily Ever After"

First dance

Claire loves her Big Daddy


Daddy's girl

Our family

Dancing with Daddy


Phillip and Trent (hard to believe Phillip was 10 years old when Trent and I started dating)

My little brother

My mom and her best friend
We had so much fun celebrating this new journey.  We are so proud of Phillip and Brandy!

The Scott Family

Friday, June 21, 2013


Have you ever had that feeling that you are the only one out there in the world that has ever dealt with something so rare that there has only been some research done on it?  That no one but doctors, surgeons, and pathologists understand the words or language you speak?  That there is no other mother out there that truly understands what you are talking about or what you have dealt with?  That you have no one out there in the entire world (although you know there are a few people out there but they have no names because they are all research cases) that just gets it?  Or that there is no one out there that Claire will be able to talk to about certain things that get it? 

Fortunately (or unfortunately – however you look at it), there are lots of Heart Moms out there that I have been able to connect with to that have helped us through Claire’s heart journey.  But I have never been able to find anyone who had the same liver disease as Claire.  I know there are other cases because you can read the research on them.  But if you Google Hepatic Mesenchymal Hamartoma (HMH), all you get are medical journals and articles.  No other blogs, no Facebook pages, no support pages, nothing.  I had even told Dr. Kapur (the pathologist who put all the pieces together from Seattle Children’s Hospital) that if he ever met someone else through his studies and research that had HMH, to please give them my information and tell them to contact me.  I think just knowing you are not the only parent out there who has dealt with HMH makes you feel a little better?  I don’t know.  You don’t want another child to have to deal with it, so maybe that’s not fair for me to say.  Misery loves company?  Maybe so.  I think of it more as I need that support.  Someone to talk to that has experienced the same thing.  They “Hey – I’ve been there!” support!

Well, by fluke the other night I was looking at my messages on Facebook and discovered that I have an “Others” folder I guess where some messages go instead of the inbox.  I had 4 messages there so I started looking through them to delete them.  One was about an event that I obviously missed.  The next one was from someone I didn’t know and was dated April 17, 2012.  Over a year ago!  It started out like this:  “Hi Rebecca.  I came across baby Claire’s blog today when researching liver tumors.  Turns out our little ones had the same type of rare liver tumor (Mesencymal Hamartoma)………”

It was like a lightbulb moment where all of a sudden I didn’t feel so isolated anymore!  I know, I know….I am not the one with the HMH.  Claire is.  But she is not yet old enough to talk to anyone about her experience.  I am the momma who needs the other momma to say “Hey girl, I feel your pain. I get you.”  And that’s what that Facebook message said to me. 

So over the past week or two we have shared stories, concerns, research, doctor’s information, experiences, and other questions we have had along the way.  Although Claire and Dylan had the same rare tumor at almost the same time 2 years ago, they have had some differences.  While Claire’s presented in-utero and she had her liver resection surgery at 7 months old, Dylan’s HMH didn’t present until he was 8 years old.  Claire’s cysts were mainly fluid filled, with a few small solid cysts.  Dylan’s cysts were mainly solid and sclerosed.  Claire’s HMH was determined to be linked to the Androgenetic Biaparental Mosaicism and Placental Mesenchymal Dysplaisa, but doctors are still unclear the source of Dylan’s HMH.  Claire had the heart defect where Dylan has autoimmune issues – both of which doctors are unsure if they are connected to the HMH. 

There are just still so many unanswered questions from both experiences as to why this all happens.  But now that we mothers have found each other, maybe we can figure things out together.  We have found out that we have a lot more in common than just our children having the same rare liver tumor from our faith in God, to our similar jobs at the hospital, to both having lived in NC, to even our birthday.  Our struggles to find the answers to our children’s medical issues and having to prove to doctors what we think is the answer is also something we have both dealt with. 

I am so thankful I figured out how to look in my “Others” box on Facebook.  And thankful that Alysia didn’t think I was being rude when I didn’t reply to her for over a year!  But it’s kind of ironic if you think about it.  Her message was in my “Others” box.  To me in the world of feeling alone with Claire’s rare liver issues, I found that there really are OTHERS out there. 

The Scott Family

Thursday, June 20, 2013