Thursday, December 8, 2011

“Hey, Grecian formula businessman, SMILE AT MY KID!”

She won’t leave you alone. She’s going to keep craning her neck to get into your field vision laughing and smiling until you can’t ignore her anymore…so you may as well give up and just grin right back at her. What’s up with these dudes? Everywhere we go and everyone we meet can’t help but smile at CCB…she makes sure of it! But these guys, well, they are the ones that actually need a little CCB in their lives to brighten up their crappy day.

She so rocked the docs this past week at her 12 month Philly triumphant return! We arrived on Monday afternoon and made a quick visit to the Macy’s downtown that has the biggest light display of any Macy’s in America. Julie Andrews narrates and there’s about 10 minute light show right in the middle of the store, 4 stories high, every hour on the hour….super worth the trip! They also have a Dickens village that you can walk through that tells the Scrooge story with puppets and animatronics….a throw back to my kid days at Pogue’s in downtown Cincinnati.

It was so surreal being back at CHOP…when we left a year ago it was decorated for Christmas….when we returned a year later, and it was decorated for Christmas, as if no time had passed yet so much has happened. Ryan Seacrest (as you may remember from a previous post) visited the SDU just days after I was released…he now has a broadcast studio that he donated in the Atrium for kids to do talent shows, celebrities to broadcast from etc. We saw familiar faces in the SDU, NICU etc that remembered us… and remembered CeCe…that was cool.

Our first appointment Tuesday morning was with Dr. Hayes-a developmental pediatrician. She was on the militant side but you could tell she’d been through the trenches and seen it all. I honestly think CeCe stunned her a little bit. She probably had expectations coming in about what she could or couldn’t do…and CeCe seemed to anticipate her every test. She would say “I need to get a look at her back”, and CeCe would turn her back to her. Then, “I need her to flex her foot, move her leg, dance a jig” (or, whatever) and CeCe would do it as if she understood her! Then the coup de gras…she said…”Can I see her crawl?” and with Brian’s watch as the lure and prize, she four point crawled for this doc for the VERY FIRST TIME! I teared up and scoop up my girl…what a show off!!!!! The doc called her “Fabulous!” and off we went to the next appointment.

The second appointment was with a PhD of some kind that evaluated her abilities for cognition at her age level. She put CeCe through problem-solving test (super fun to watch her figure out how to get a toy out of a clear cube the was open on one side, but the doc kept shifting the open side forcing her to problem solve to get the toy). We heard her imitate what the doc was saying to her…for instance, a toy fell on the floor and the doc said “I’ll get it!” to which CeCe said “Ah-Ge-It”! She tested her with peg boards, tea cups, pictures and shapes. Each time the doc would demonstrate what she wanted CeCe to do and each time…SHE DID IT! Such a proud day for us! This doc called her “DELIGHTFUL!” I was like, “Yeah, I know!”

The rest of that day was pretty uneventful…dealing with a tired child and a shared hotel room presented its challenges but, we managed.

Day Two: This is the one we asked so many to pray on: Urology. After waiting an hour and 20 minutes past our appointment time they came and got us for her VUDS (Video Urodynamics) testing. This measures the pressures and basically the elasticity of her bladder walls. It takes about 45 or so as the fill her bladder with fluid and a computer and ultrasound mark when it contracts or leaks (if she coughs, cries, or sneezes….that happens to me too  !). It’s a boring process and I couldn’t understand the computer graph so we just basically stood there and helped keep her calm. Little Bit fell asleep (thankfully) about ½ way through and managed about a 20 minute power nap). When they finished, the doc and nurse were EXTREMELY quite…so much so that both Brian and I got very worried…EVERYTIME they get quiet like this, bad news has followed…but NOT this time! CeCe’s bladder IS contracting to some extent on her own, but she does also leak when she cries and laughs. But her kidneys look perfect, she has ZERO signs of reflux (which means we don’t’ have to worry about that anymore!) but she doesn’t quite empty all the way. What does that mean? Good question! No more antibiotic everyday! WOO HOO! And, as expected, when she is ready to be potty trained and what they call “socially continent” she most likely will have to be catherized to keep her dry…not a big deal and to be expected. But, who knows….again, time will tell!

All in all, this was a great trip. CeCe has proved once again that she is her own person and is not a text book child.

Finally, our flight home was, well, let’s just say turbulent. So, to the Flight Crew on Flight #1527 from PHL to CLT…let me apologize now and say “Clean Up in Aisle 14”, you may want to replace the barf bag in the seat back. Note to self…never travel the day a weather front is moving through….I believe I tossed my cookies somewhere over Virginia. My sincerest apologies to the poor woman strapped to her seat like a caged animal with a barfer and a baby….hope your Thursday turns out better than your Wednesday (and thanks for passing me the second bag).

Some random things to think about…

1. Why to Philadelphians love Dunkin Donuts so much that they are omnipotent?
2. Why is there a show called “It’s Always Sunny in Philadelphia” when it rains every time we are there?
3. What the crap is Scrapple made out of?
4. Camden, NJ should change its motto to the City of Brotherly Love or similar, then maybe everybody wouldn’t be shooting everybody else. Hate to be a real estate agent there….”And only 6 people have been shot in this house….way below the community average!”

And to that I say to you, beloved Blog Reader(s), Peace Out, Philly…see you in 18 months!


  1. Hi Jen,

    I stumbled upon your blog, and reading few of the entries has given me a very meaningful inside perspective about having a child affected by spina bifida. I am inspired by your courage and touched by the pictures of your family that I had to reach out. My name is Courtney Beyer, and I am the new Study Coordinator at VitaPath Genetics. Earlier this year, we successfully completed the first phase of our landmark study looking at the genetic factors contributing to spina bifida. In conjunction with our academic collaborators at Children’s Hospital Oakland Research Institute (CHORI), Stanford, UC Berkeley and UCSF, we recruited over 1,000 women and their child affected by spina bifida to participate.

    Our first phase produced promising results but, we believe that it is appropriate for us to replicate this study in a second, independent group of mothers. We are beginning our second study in early January and are reaching out to more mothers to participate. In order to reach as many women as possible, I would very much appreciate if you could include news about the study in your blog. I also have banners and buttons if you would like to post something on your site. In addition it would be great to connect with you via facebook (search SB Genetics) and twitter @sbgenetics.

    I would like to get in contact with you to share more information and answer any questions that you may have. Please email me at and visit This website gives an in depth explanation of the study as well as a link if you are interested in enrolling. Thank you for taking the time to read my note and I am greatly looking forward to being in contact.

    Warmest regards and happy holidays,


  2. Hey! We’re putting on an online live Q&A with Dr. Levitt from Cincinnati Children’s Hospital about fecal incontinence related to spina bifida, on February 22nd, 2012 at 7:00pm ET. If you’d like to participate in the event, you can RSVP here: If you’re interested in hosting the event on your site or blog and would like some more info, please contact me, John Martin at john (at) Thanks!