Tuesday, July 31, 2012

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!

Sunday, July 29, 2012

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. 

Thursday, July 26, 2012

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. 

Thursday, July 5, 2012

The Fourth

Yes, I realize birthday pictures still have not been posted (two months belated.)  Caleb is in charge of the birthday post - yes, I just called you out...

This fourth of July was a bit different than most.  It rained.  In Phoenix.  An early monsoon present.

Emmy started off her day in rain boots.  Enjoying the cooler temperatures while they last(ed).

Zoe joined her, but in flip flops.

We spent the day pretending we were on vacation - in Southern California or better yet, Hawaii - with the overcast and humid conditions. It was a nice change up for us Phoenicians.

At night, we broke out the sparklers. We thought for sure Zoe would be scared of them and not want to participate. But really, what were we thinking?! She's fearless. I'm pretty sure the only reason Emmy went along with the sparkler fun was because she saw her little sister attempting to set the entire backyard on fire and thought, "oh, that looks fun!"

Some fun pictures from our Fourth Fun in the backyard.

We relish these moments with our girls.  Every holiday, every birthday.  The lesson we've learned in taking nothing for granted definitely has it's perks.

At the end of the month, we'll be heading back east, to Philadelphia.  This trip, while we'll be spending a good amount of time at CHOP, will be mostly for fun.  Zoe has an appointment with the Neurocardiac Care Program and we get to visit with many of our friends - both physicians, care coordinators and fellow heart families whom we've come to know and love over the past two-plus years. 

I'm looking forward to being in Philadelphia again, to see Zoe running down the halls at CHOP.  What a surreal and exciting moment that will be!