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!


  1. Dr. Gil WernovskyJuly 31, 2012 at 6:18 AM

    Great News!

  2. Glad to hear things went so well! It sounds like Zoe's assessment was exactly the same as Aly's a few weeks ago. We started Aly in gymnastics two weeks ago and can already tell a difference.
    I wanna go next year! :)

  3. Nicole SkurjunisJuly 31, 2012 at 6:43 AM

    I am so Glad that it went wonderful. The NCCP definitely has made a GREAT difference in Jacob's life. Our primary care never pushed for therapies for him, but thanks to Dr. Gil and his wonderful team, Jacob is growing stronger and recieving weekly therapies. I love this program and I love all that CHOP does!! I am so glad Zoe is being the Rock Star we all know she would be since she started her Journey!

  4. Stacey,
    So glad to hear how well Zoe is doing. That us fantastic! Sorry we didn't have the opportunity to meet up with your family while you were here. Hope to be able to attend Heart and Mind next year, and meet many more heart families.
    All the best!!
    -Julia Rowbotham, Lily's mom

  5. GREAT news all around! So glad that the leg discrepency was cleared up.

  6. What a busy day! But very happy to hear you received great news all around! Will pray everthing works out just as planned.

  7. I just saw you speak at the DNC and decided to look you up and came across your blog. It is such a small world because I go to CHOP too and have seen Dr. Davidson. Obamacare!

  8. Great job speaking at the DNC! My son also had his surgery at CHOP and is part of the congenital heart disease study. What a wonderful place - well worth traveling to!