Top Surreal Moments from DNC 2012

As you can tell, from the lack of posts, the Lihns have been a tad bit busy.

As many of you know, this past week, our family traveled to Charlotte, North Carolina for the Democratic National Convention.  It was an honor to be asked to participate in the convention and share our family story and the importance of the Affordable Care Act on our family.  For those of you following my Facebook posts, there was a bevy of surreal moments throughout the week at the DNC.  In fact, there were so many, I decided to create my own Top 28 (couldn't narrow it to 25) Surreal Moments from DNC 2012, in the order in which they happened. 

1.  Shortly after I learned I would be speaking at the DNC, I was contacted by one of President Obama's speechwriters.  Yeah, one of the President's speechwriters!  We discussed the content of my message and I stressed that I wanted to mention the prevalence of congenital heart defects, to help raise awareness on a national stage.  Fortunately, the speechwriting team, allowed me to craft nearly 100% of my speech, hence the "1 in 100" reference to Congenital Heart Defects! 

2.  As part of the process, I went through a rehearsal, several hours before my speech with Obama's speech team and other campaign officials.  I recited my speech, with the assistance of a teleprompter.  There was a lot of emotion during my run through, so much so, that I started sobbing at the end.  After I regained my composure, I learned that there wasn't a dry eye in the room.  That gave me immediate validation that the speech was powerful and effective.  In fact, one of the lead campaign officials walked up to me, told me about her daughter's heart defect and open heart surgery and asked me for a hug.  A more detailed discussion of the behind the scenes process of my speech can be seen in this Jansing and Co. clip.

3.  After rehearsals, I was taken into the arena and was given an opportunity to view and stand on the convention stage.  This helped me visualize delivering my speech.  At this point in the day, the podium was still in another area, being kept under lock and key.  After some discussion, I was allowed to go even further behind the scenes to see the podium.  Security was very tight!

4.  After rehearsal, I was told to meet back at the Time Warner Arena at 7:15 p.m.  Once there, we were guided to the basement and into the green room to prepare.  One of the first orders of business was to get makeup done.  Caleb went first and in addition to face and neck makeup, had his hair touched up.  I went next, and was seated in a chair next to Kal Penn, who gave a speech after me.  Emerson was brought in next and they put on powder and lip gloss, she was so excited.  Zoe was asleep, in her stroller, during this process, but she woke, on her own, a few minutes before we were summoned backstage.  As we were walking out the door, they threw some quick powder on her face.  

5.  As I entered the makeup room, Kathleen Sebelius, Secretary of Health and Human Services, approached me, gave me a hug and thanked me, prior to my speech.  I still have no idea how she knew who I was!  I, of course, took the opportunity to thank her for all of her efforts in raising CHD awareness and recommending pulse ox screening for all newborns.

6.  Obviously, delivering my speech was the reason we were in Charlotte for the convention.  For those of you who know me, Obamacare is of imperial importance to my family.  Anything we can do to advocate for the law is a civic duty we will fully embrace.  The opportunity to do so, in front of millions of people, was a once in a lifetime opportunity.  We were honored and humbled to be asked to be there. 

7.  While backstage and giving my speech, I felt energy from the far too many heart angels who lost their battle too early.  I've known too many to name, but I kept several of them - Mia, Travis, Gwenyth, Cora, Emma, Hayden - on my mind during my speech and I literally felt their collective spirit on stage with me.   

8.  Immediately after my speech, we went backstage and received hugs and compliments.  I was told we received a standing ovation.  I was definitely a little surprised at the crowd's reaction.  As we were leaving the backstage area, Craig Robinson, Michelle Obama's brother, was entering, as he was about to give his speech.  He looked over at me and said "great speech!"  We went down the steps towards the green room, and Rahm Emmanuel walked out, preparing to head backstage for his speech, shook my hand and complimented me; he also shook Caleb's hand and told him he did a great job as a father "standing there."  Tammy Duckworth, who gave an emotional speech, two speakers before me, congratulated me on my speech.  When Caleb went back into the green room, to get the girls' stroller, as he was walking out, Deval Patrick, the Governor of Massachusetts, approached him, with tears in his eyes, shook his hand, and said "great job out there, your family is amazing."  

9.  After gathering our things, we walked down a long hall and were escorted to a series of tables that contained 25 commemorative DNC posters.  Each speaker is asked to sign the posters.  After I was asked to sign, my first thought, was are you sure you want me to sign these?  It was a bizzare and extremely humbling experience, particularly with many of the names that were already signed to the posters.  I'm not sure what they do with the posters, but I signed all 25.

10.  After signing, we were navigated via my "speaker tracker" through a maze of back stage hallways and guided up to a suite, to watch the remainder of the opening night of the convention.  From the suite, we watched Julian Castro, the mayor of San Antonio, TX, deliver the Keynote speech and Michelle Obama deliver her speech to close out Tuesday night.  While in the suite, Nancy Pelosi and her daughter, Alexandra, who were in the neighboring suite, both shook my hand and complimented me on my speech.  After his Keynote speech, Julian Castro entered the suite and shook Caleb's hand and told him we did a great job.  

11.  After Michelle Obama's fantastic speech, a quick interview with USA Today and the close of night 1 of the convention, we were guided out of the arena.  As we made our way through the huge crowd, which wasn't easy with a double stroller, we were stopped by numerous convention attendees, congratulating me on my speech and/or said we did a great job and have a great family.  The positive reaction caught Caleb and I off guard; it was both humbling and rewarding, and validating to know that the speech had such an impact.   

12.  Once outside the arena, we had to navigate the thousands of convention goers, also walking the streets of Uptown Charlotte.  While walking away from the arena, people continued to stop Caleb and I and congratulate us on our journey.   It was almost overwhelming.  One woman ran up to me and yelled "You're trending on Twitter!"

13.  I also met countless strangers, who after seeing my speech, told me, with tears in their eyes, of their children's CHD stories, including a campaign staffer and an AEW union official.

14.  While enjoying our midnight walk through Charlotte, Zoe, understandably, started getting fussy.  In an effort to distract her, Caleb put her up on his shoulders.  After a block or two of Zoe getting a bird's eye view of the crowd, we heard someone jogging, almost out of breath come up behind us and stop us.  He introduced himself as Greg Stanton, the mayor of Phoenix.  "I'm your mayor!"  He complimented me on my speech and wanted to take a picture with our family.

15.  After returning to our hotel room Tuesday night, exhausted and excited, Caleb and I began reading our emails and text messages, of which there were many.  From those messages we learned that my speech was not only well received by the crowd in attendance at the arena, but also the media.  We were informed there was numerous discussion of the impact and importance of the speech on MSNBC.  After later watching a replay, it was surreal to hear my name, and our family discussed, from the mouths of Rachel Maddow, Chris Matthews, Lawrence O'Donnell, Ezra Klein, etc...

16.  While reading the literally hundreds of emails I received, I was touched and brought to tears by so many of them.  One email was from a man who said his family had never seen him cry, ever.  During my speech, he started crying and he thanked me for helping him show his family a different side of him.  I heard many stories as emotionally impactful as this one.  I am slowly doing my best to respond to all of the emails.  

17.  After a few hours of sleep, we woke up Wednesday morning to find countless media reports and photos of our family in publications including USA Today, The Guardian, New York Times, Huffington Post and others.  Very surreal.

18.  Wednesday morning, I received calls from MSNBC, a local Phoenix news station and Glamour Magazine, all requesting interviews.  As long as I can talk about CHDs, I'll give interviews all day.

Doing a satellite interview, at the convention site, with Channel 12 in Phoenix.

19.  One of the most surreal moments, for me, was the invitation to sit in First Lady, Michelle Obama's suite Wednesday night during Bill Clinton's speech.  Um, yes!   

20.  I received a congratulatory email from one of the speechwriters I worked with.  He told me that after my speech, as we were walking offstage, the back of the arena was chanting "Zoe! Zoe! Zoe!" while giving us a standing ovation.  How awesome is that!?

21.  Wednesday night, I nervously went to the second night of the convention, knowing I was sitting in Michelle Obama's suite.  I felt slightly out of place navigating through secret servicemen, but after a glass of wine, I was just fine! 

22.  The seats were assigned in the First Lady's suite.  After glancing at the various name placards, I saw my suite mates, in addition to Michelle Obama, included Julian Castro and his twin brother, Kathleen Sebelius, John Estrada, Lily Ledbetter, US Congressman John Lewis and, in the next suite over, VP Joe and Jill Biden!  

View from Michelle Obama's suite.

President Clinton delivering perhaps the best speech of his career.

23.  While in the suite, I realized I had to go to the bathroom.  I made my way to the suite door, and discovered several secret service agents standing in front of it.  So, I kindly asked them where the bathroom was, they slowly stepped to the side and pointed.  This brief interaction made me realize the enormity of the situation, and how strange life in politics is.  

24.  After sitting in the suite for a bit, Michelle Obama made her way in.  Her Chief of Staff introduced me to the First Lady.  Michelle Obama immediately embraced me, then took both my hands and told me how inspiring and wonderful my speech was; she told me that "we" (I assume she and Barack) talk about the importance of eliminating lifetime caps quite often and how our story is truly inspiring and perfectly illustrates the importance of their work.  Wow, just wow!!  To say it was difficult getting to sleep Wednesday night would be an understatement.  Even Zoe stayed up until 3 a.m. bouncing off the walls!

25.  On Thursday, the third and final day of the convention, we picked up our convention credentials and planned to get to the arena early to meet up with Sierra and Andy - the talented producer and videographer who we originally met in January of 2012 when filming Faces of Change: Life Without Limits.  Even though they were only at our house a few days, when they left we felt like family was leaving.  We've kept in touch with them since then, but were very excited to see them in person again.  The girls were excited too.  We love you Sierra and Andy!

Andy & Sierra

Together again!

Sierra got to hold Lambsie.

26.  After letting Sierra and Andy get back to work, we found some seats and settled in for the final night of the convention, excited to listen to Barack Obama address the nation.  We knew it would be a long night for the girls, since we sat down at 5:00 p.m. and President Obama wasn't scheduled to speak until 10:15 p.m.  Fortunately, James Taylor lulliby'd Zoe to sleep for an hour-long nap.  The girls did great and seemed to be soaking up the atmosphere.  Then, it happened.  President Obama, in his speech, said:  "You're the reason there's a little girl with a heart disorder in Phoenix who will get the surgery she needs because an insurance company can't limit her coverage."  What a fantastic moment, to hear him refer to Zoe, not by name, but it was unequivocal who he was talking about.  He continued to refer to her on the campaign trail, the days following, in Iowa and Florida.  It is so awesome that Zoe is helping to make the world a better place and do her part to better healthcare for families with sick children.  

27.  Following President Obama's speech, we made our way out of the arena, still in a daze from President Obama referring to Zoe.  On the way out, we were stopped by many convention attendees who wanted to take pictures of our family or with our family.  What an honor!  Oh, and I got a good chuckle that I "look much taller on stage."

28.  When we arrived home Friday evening, while watching the Daily Show, we saw Jon Stewart discussing Obama's speech Thursday night.  He talked about the portion of the speech where Obama gives the public credit for making a difference.  Then, after playing the clip where Obama refers to Zoe, the camera flashes back to Jon Stewart, who in a sarcastic tone, says "You're welcome!?"  We love the Daily Show, so it was pretty cool to have him include the subtle reference to Zoe.

As amazing as the whole week in Charlotte was, and how surreal the whole experience was, the most inspiring and monumental part of this entire experience was delivering the message of the importance of Obamacare to a large audience and raising awareness, to the general public of the prevalence of congenital heart defects.   It was such an honor to learn afterwards the effect and impact of the speech. 

Hopefully, last week's events brings us closer to two of my biggest wishes - that one day no families will have to deal with congenital heart defects, as there will be a cure, and that one day every American will have access to adequate healthcare.

Thank you all for your love and inspiration.  Thank you to those who support me and my message, even if they sit on the "other side of the aisle." 

And, as I've been so inspired these past few weeks, let me inspire you with one of my favorite quotes:

 

Emmy's First Day of Preschool

Today, my little baby girl started preschool.  The past four years have flown by so very fast.  Before I had children, I always heard people say "kids grow up so fast."  I never realized the full impact of that statement until today. 

As we hustled to get Emmy out the door this morning (and Zoe ready for Papa's house), I made sure to get a few pictures of Emmy on her first day of school.  This year, Emmy is attending a Montessori school that focuses heavily on science - Black Mountain Science Academy - where much of the focus is on microbiology.  With Emmy's love of Doc McStuffins and her fascination with Zoe's constant doctor visits, perhaps this'll prime her well for medical school. 

Who knows, maybe both Emmy and Zoe will go to medical school.  Don't think it's possible for Zoe?  Think again - check out this amazing story of Tom Glenn, shared by his mom, Terri, who lives in Chandler, Arizona!

Of course, as soon as I picked up Emmy today after work, I asked her to tell me three things about her day.  I figured I wasn't going to get much when she stared at me blankly and said, "Uuummm..."

So, with much prodding (and Papa's help), here is what I got:

1.  Emmy played with her new friends Abigail and Maddie.
2.  Emmy went to the playground.
3.  Emmy did puzzles.
4.  Emmy did not eat all of her goldfish at lunch.
5.  Emmy learned "criss-cross applesauce" but is unsure why.
6.  Emmy lost her sandwich container.
7.  Emmy did not "pee on the potty" because her teacher didn't tell her to.
8.  She did not see Arik.

and last but not least . . .

They do "flag" during "circle time." (What flag you ask, "the Obama flag!"  I said, Emmy, you didn't say that in class did you?  Her response, "no, I was quiet.")

So yes, she may be in preschool, but she's also apparently doubling as an Obama campaign staffer.

We'll see how tomorrow goes - so far, so good!

Kick, Kick, Art

While all four of us were sick on Saturday, fortunately, everyone felt better on Sunday, just in time for the girls' first ever swim lesson.  The instructor, Jennifer, came to our house and was very good with the girls.  They worked mostly on kicking.  Lots of kicking.

And learning how to catwalk to the steps...

Zoe expressing her displeasure

All started off well, until it was time to go underwater!  Admittedly, mommy wasn't too thrilled about this part either.  Emmy was more than unhappy; she was terrified.  Her (very experienced) swim instructor convinced me that all of this is normal with new swimmers and kids don't like water in their ears, etc.  (who does?)  But all that ran through my mind is the Oprah episode about dry drownings... anxiety much?!

Emmy's underwater trial by fire; she kicked herself up and grabbed the side, as instructed.

Zoe really showed off her strength during swim lessons and practically scaled the wall to climb out of the pool.  Swim instruction definitely counts towards good aerobic activity!

Even though the girls were not so thrilled with their first immersion class, we're hoping next week will be a little easier.

To top off the weekend, we did some wall hangings in anticipation of the many items Emmy will be bringing home from preschool.  Yep, 1/2 day, 5 days a week preschool starts next week!  To get Emmy in the spirit, we prepared a wall in her playroom so she could show off her goods.

Of course, while we attempted to finish up the project, Zoe was less than helpful... this girl tried to scale the walls all weekend!  Perhaps she was just showing off - she wanted everyone to know that she wasn't going to let a little cold keep her down.

Day at CHOP

Today was the primary reason we made this trip to Philly.  An appointment with orthopedic surgery and a day of evaluations with the NeuroCardiac Care Program.

Our first appointment was with the orthopedic surgeon at CHOP,  Dr. Davidson, who specializes in leg length discrepancy.  He evaluated Zoe and quickly pronounced and demonstrated that she does not have a leg length discrepancy.  When we told him about the 2cm discrepancy measured a couple days before, he chuckled and asked if it was identified using a tape measure.  When we said yes, he said that is a notoriously inaccurate way to measure legs. Given her clot, however, he said there is a chance that down the line she could develop a discrepancy.  For now, the good news is he said there is no need to do anything, and he wants to see her back in a year for another evaluation.  We were relieved to hear what Dr. Davidson had to say.

After the orthopedic appointment we had less than 10 minutes to get over to cardiology.  After we were called back, a medical assistant checked Zoe's vitals and took measurements.  She is up to the 25% for weight and 50% for height.  Must be all the guacamole Zoe eats.  Her sats were 91, which everyone was pleased with. 

First, Zoe saw a developmental pediatrician who interacted with and examined Zoe.  Zoe was very social, as she usually is, and the pediatrician was impressed.  Based upon the tests she administered, Zoe scored at the 32 month level, 6 months beyond her age level.

Next, Zoe was assessed by a speech therapist.  The speech therapist spent some time showing Zoe pictures and asking her to identify objects and string together sentences.  Zoe did very well, and the therapist was impressed.  She didn't push too far beyond her age level, but based upon where she stopped, Zoe's language skills tested at 2 years and 6 months, or about 4 months beyond her age.  

Physical therapy was next on the docket and this was not Ms. Zoe's strong suit.  She tested 2 months beyond her age in balance skills, but is a tad delayed in locomotor and object manipulation/ball skills.  Even though Zoe's weekly physical therapy ended a few months ago, the therapist suggested resuming weekly therapy to help push Zoe on particularly the locomotor activities.  She also suggested community based athletic activities.  She said that they've seen that heart kids who participate in non-competitive athletics early in their childhood seem to do better with activity later in adolescence.  Fortunately, Zoe starts swim lessons next week.  We also plan to enroll her in Wee Ballet through the City of Phoenix.

Zoe then saw the neurologist who concluded that Zoe did not show any signs of neuromuscular issues or gross motor issues.  He then sent in the nutritionist who went over Zoe's diet and given her location on the growth chart suggested only minor changes to her diet.  An occupational therapist also came in and based on her evaluation, provided suggestions for some things for Zoe to continue working on during her weekly occupational therapy appointments in Phoenix. 

Last, Zoe saw her CHOP cardiologist, Dr. Szwast.  Dr. Szwast reiterated that Zoe looked great, sounded good, had great color and no liver enlargement.  She emphasized that given the potential liver issues (scarring) that routinely develops after the Fontan, she would like to wait until Zoe is 4, or the Spring of 2014, to do her Fontan. Let's hope Zoe's body cooperates with Dr. Szwast's time-table. 

All in all, it was a good day of appointments and definitely helpful to have the benefit of all the evaluations, essentially at one time.  It was, however, a long day and certainly pushed Zoe's limits.  In fact, literally minutes after the last appointment finished, Zoe passed out on the exam table.

After the appointments, we met up with our friends, the Jackley's, who's son Kellen also had NCCP appointments.  The adults were all exhausted, but the kids somehow found a second wind and had plenty of energy to play.

Kaylin and Emmy hugging it out.

Zoe pushing Kellen.

We had a great time in Philly and are headed back to Arizona today.  Although, since orthopedics wants to see Zoe back in a year, she will be due for another NCCP visit in a year, and Heart and Mind day is usually every July, we may just have to make our July CHOP visit an annual tradition. 

See you next July Philly!

A Little Bit of Everything

On Friday morning, our first order of business was to take Zoe to CHOP to participate in a research study.  We dropped Emmy off at Poppa and Grandma's room and took Zoe for the three block walk from our hotel room to CHOP.

Shortly after arriving at CHOP, we met with a cardiologist who interviewed us, examined Zoe and took several measurements of her legs.  She also had an ultrasound of her abdomen and both legs.  The study director is Zoe's interventional cardiologist, Dr. Glatz.  The purpose of the study is to look at potential damage to the anatomy from catheterizations in infants younger than six months.  We always knew Zoe had a fully occluded femoral clot in her left leg, but we didn't know exactly what, if any, long term complications she'd experience as a result.  We learned from the leg measurements that her clot leg is 2cm shorter than her other leg.  According to pediatric standards a leg discrepancy of greater than 2cm typically requires some level of treatment.  Even before this study, Zoe's physical therapist observed a discrepancy and recommended we consult with an orthopedic physician.  Since we knew we were traveling to CHOP, we decided to squeeze in an ortho appointment.   We will find out on Monday morning, what the orthopedic surgeon recommends for her discrepancy.  After we completed the elements of the study, the research assistant who coordinated the testing, told us that Dr. Glatz wanted to come say hi, and see Zoe.

We couldn't convince Zoe that Dr. Glatz wasn't going to try and cath her.

During our conversation with Dr. Glatz, he indicated that, from what they've seen, of kids with post-cath leg clots, approximately 90% of kids have them absorb into the body. Zoe is in the 10% who's clot remained.  The clot is the likely culprit for the leg length discrepancy.  Dr. Glatz said that Zoe's 2cm discrepancy is one of the bigger ones they've seen so far in their study.  Although she obviously didn't come out unscathed from the cath she had at one month old, it was necessary, and life saving, since it discovered her narrowed BT shunt which, if not discovered when it was, could have led to her death.  One of the many reasons we love Dr. Glatz.

After spending a few hours at the hospital, we decided to head to Sesame Place, for some fun.  It was a bit humid, but the girls had a blast. 

Zoe loved the carousel. 

Which Elmo should I get?

Keeping cool in the tide pool.

My sister and mom riding the coaster.

On Saturday, Caleb and I went to CHOP for their annual Heart & Mind Day.  It is designed as a day of learning for parents and patients affected by congenital heart defects and an opportunity to interact with CHOP doctors and nurses.  We enjoyed socializing with many of our heart family friends.

HLHS Moms - Katrina, Jackie, Stacie, and me.

We also learned quite a bit.  Two of the quick facts, that we found interesting, and wanted to share are:

The number of babies born each year with a single ventricle (including HLHS) is equivalent to the number of new cases of childhood leukemia, 2,500 a year.

&

In the 1970's HLHS was 100% fatal shortly after birth, in the 1980's it was 80% and today it is down to 20%.

While we learned quite a bit of positive information, we also learned that single ventricle children are, in large numbers, demonstrating hearing loss starting around age 4.  They don't yet know the reason behind this.  We also learned that liver damage in HLHS children is more prevalent than originally thought.  Because the liver is directly below the heart, and because the HLHS heart, even after the third surgery is a less than optimal circulation, the circulation in the liver is forever compromised.  Now that surgeries are resulting in greater numbers of children surviving into, and beyond, school age, physicians are collectively appreciating greater numbers of liver scarring.  This is one of the main factors behind delaying the age of the third surgery (the Fontan) from 18-24 months to 3-4 years. 

I'm glad we were able to attend Heart & Mind Day, and we definitely want to attend again in the future.  While we were learning and socializing, my parents and sister took Emmy and Zoe to The Crayola Experience.  The girls LOVED it and brought home lots of cool arts and crafts.

The girls sent us a message while we were at CHOP

Saturday evening, after we all met back at the hotel, we decided to get cheesesteaks from Jim's Steaks, the best in Philly.  Soooo good!!

Zoe was a fan of the cheesesteak with Whiz and onions.

On Sunday, we had brunch at White Dog Cafe, one of our favorite brunch spots in Philly.

Someone pointed out that Caleb and Zoe appear to be mimicking two of the characters in the painting behind them.  Total coincidence.  

We then walked into Center City for a day of hanging out in the park and shopping. 

Emmy and Zoe tackling Poppa.

Aunt Stephie and Zoe smelling flowers.

Emmy and Zoe looking for the perfect flower.

Exploring the park.

Family photo. 

The photos above are all from Rittenhouse Square Park.  When Zoe was a month old, after we were discharged from CHOP, we were required to stay in Philly for a week, for observation, before we flew Zoe home.  Besides getting from CHOP to our hotel, and our hotel to the airport at the end of the week, Zoe was out of our hotel room for about 10 minutes.  Just enough time to get a picture of her in Rittenhouse Square Park.  Since then, every time we come to Philly we try to get the same picture.  Here are pictures of her, at that same spot, at one month old, 14 months and 26 months:

As you can see Zoe has come a long way and is growing up quickly.  To give her the best chance at a long life, on Monday we return to CHOP for a long day of appointments.  At 8:30 Zoe has an appointment with orthopedics to assess her leg length discrepancy.  Then at 10:00 she has her first appointment with the NeuroCardiac Care Program (NCCP).  As part of the NCCP, in a span of four hours, Zoe will be seen and evaluated by a pediatrician, cardiologist, neurologist, physical therapist, occupational therapist, speech therapist and a nutritionist.  By the end of the appointment, they will author a joint report assessing Zoe in each of those areas.  We are anxious to see how Zoe's NCCP appointment goes.  We will, of course, post an update on Monday, after the appointments.  

We're having a great time in Philly and look forward to continuing our tradition of annual trips, for many years to come. 

Going Back to Philly

Today was the day that we made the long trek from Arizona to Philly.  When we arrived at the airport, we learned that our flight had a one hour delay. 

Zoe protesting the delay.

After some games, snacks and hanging out with Poppa and Grandma, who generously made the trek with us, the time passed quickly and we were ready to go!

Emmy and Zoe following daddy on to the plane.

Zoe strapped in and "ready to ride the airplane!"

Zoe stayed awake the entire 5 hour flight, until 10 minutes before landing, when she decided it would be a good time for a nap.

Made it to Philly!!

Once we arrived in Philly, we met up with my sister, Stephanie, who flew all the way from San Francisco to hang out with us.  All 7 of us piled into a minivan and headed for our hotel.  After getting settled in at the hotel, we planned to meet up with the Jackley family.  Their little guy, Kellen has HLHS, like Zoe.  Like Zoe, Kellen also has an older sister, Kaylin.  The Jackleys were super generous and let us borrow their pack 'n play for Zoe to sleep in, they made custom gift baskets, perfect for a fellow heart family, filled with snacks, drinks, soap, hand sanitizer, anti-bacterial wipes, paper towels, sippy cups, syringes, dish soap, anti-bacterial spray, etc.  They also gave the girls awesome gift baskets with their own Philly Phanatic!

Kaylin and Emmy at dinner.

Yum, making S'mores.

Skipping in the rain.

Zoe, Kaylin, Kellen and Emmy.  What cuties!!

After a long day of travel, everyone is wiped out.  On Friday, Zoe has an appointment at CHOP to take part in a research study by her interventional cardiologist related to damage from cardiac catheterizations in infants younger than 6 months.  Zoe had 2 before 6 months, and the first one, at one month old, resulted in a full occlusion of her left femoral artery.  The study includes an ultrasound on her abdomen and legs then an interview and questionnaire.  We love that CHOP is always researching and developing new or improved treatments on our kiddos, so we are happy to participate in research when we can.  After completing Zoe's part in the study, we are taking the girls for a day of fun at Sesame Place.  Of course, expect to see plenty of pictures of the girls with their favorite characters.