“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!

Super quick and super awesome

I promise to post more later, but the quick gist for today is....AWESOME! CeCe's first appointment was with a Developmental Pediatrician who put her through the physical paces...checking reflexes, social interaction, and all other milestone abilites. The doc was obviously impressed! She called her fabulous and had nothing but great things to say...CeCe even showed off by crawling on ALL FOURS for the first time for her! Get it, girl! We don't get a true clinical opinion because they don't know her outside of the 45 minutes they spent with her today..but she had such great things to say.

She also saw a neurodevelpmental doc that checked all her cognitive skills and abilites...CeCe did skills for this doc I never knew she could do...stacking two blocks, problem solving, and imitation among them. This doc called her Delightful! It was so fun to watch her impress them.

Urology up tomorrow!

Got a hankerin' for a Philly Steak & Cheese?

Me too! It's almost time to head back to Philly! What the #$%@? How did that happen? What a year we've had! CeCe just marked her first birthday last week and what a blessed event it was...so many of those that have looked after her (& us) all together in one place to celebrate this sweet baby girl. Thank you to all of you there both in body and spirit...we would not be here today with such a great outlook without the constant care of all of you!

Moving on...I've started taking a better view on her last report (MRI and ENT) and now we are ready to kick some CHOP butt coming up!

CeCe's PT looked up the testing protocol that they will be using to measure her mental and developmental progress (Bayley Scales of Infant Development)and she can rock them all but one! It's going to be a strange testing period in that we are in the room with her but not allowed to encourage her...she has to be able to do everything on her own...what kid does that? And they also won't take into consideration any parent input...like, we can't just say "she does that all the time"...if they don't see it, she can't do it...is their philosophy....whatever...we know the truth, right?!?

She is also going to have her annual Urodynamics testing which will test her bladder pressures and make sure she is voiding completely. This is such a common issues for sb kids but she's been doing really well all year without a single UTI and perfect ultrasounds of her kidneys. Brian and I have both been praying on this one the most and humbly ask you to do the same.

They will also being covering her back closure scar so that the researchers don't have any bias as to whether she had fetal or post natal surgery and we are not allowed to say ANYTHING that might lead them to think one way or another. As a sidenote, the study recently got a grant to EXTEND the follow-up. So in additon to our return here soon, and at 30 months...we will also be returning sometime between ages 5-7...that's GREAT! The more research, the better!

I'll update when I can from Philly!

MRI...complete.

We just got home from the hospital and CeCe is doing well. The ENT did her bronch scope and said that all is pretty much the same as the last time he looked in August. Her right cord is still not moving very well, but her left is about full function. He was also able to say that the nerves around that area seems good so that's a positive sign that the right one may still come back.

On to the MRI and neuro. The MRI showed that her syrinx (the fluid in her spinal cord) has not gotten any smaller as we had hoped since her decompression in February. As the neuro said this is not really good or bad news, it's just news. What it means is that they went ahead and changed her shunt setting in hopes that would fix it. Then they will redo her MRI in 6 months (ugggh) and see if that helped. If not, the next thing is to decide if she needs a second shunt (different then she has now) in her spinal cord to remove the excess fluid and not allow it to build up causing loss of function below the site. Not something we want. They also told us that she has a tethered cord...I guess we knew this, but this is the first anyone has said it outloud. Once she starts growing more, the spinal cord will become taut and cause her to lose function below that spot and she'll have to have another surgery to de-tether. All sb folks have this, it's just when it becomes symtomatic that it's a problem.

Sorry this is such a bland post, but it's been a long day. BTW, when they came out to get us when she was in recovery the nurse said..."She's so happy!" That's my girl!

BTW, if you take a look at the calendar, CeCe will be 1 year old in two weeks...holy cow! If you'd like to get her a gift, that's great but we would really love for people to make donations to the sb association instead. Here is the site...

https://www.kintera.org/site/c.liKWL7PLLrF/b.3876151/k.68FB/Tribute__In_Honor_Of/apps/ka/mt/createCard.asp?c=liKWL7PLLrF&b=3876151&en=rmLYJ8OUJbKQIfOVLbKUJjM2LjI1KjO6LuIaKrOeG


Thank you all for your prayers (and positive thoughts!)

Tomorrow is another big day...

Just a reminder that CeCe has a pretty big day tomorrow. She is going to have a bronchoscopy at 7:00am and her BIG MRI from 8:00am-11:00ish. We have to be at the hospital at 5:00am....geez. I'll update when I can. thank you in advnace for your prayers!

PS...if this doesn't make you smile today, then nothing will!

"They's my MAGIC shoes!"

Thank you Forrest Gump! CeCe got her AFO's (ankle-foot orthotics) yesterday and the cutest little running shoes to go with them. She took to them quickly and you can tell they will really help her to learn to stand properly and distribute her weight and help her to learn to walk. They go from her toes to mid-shin/calf and fit perfectly into her new Keeping Pace running shoes....a company created by a mom with a son with cerebral palsy that got tired of the constant struggle to find shoes that fit over braces. Love companies like that!

CeCe has a few big dates coming up including her sedated MRI on Tuesday, November 8, so please add her to your prayer list. This is a big day for the neurosurgeon to be able to check in on how her Chiari is doing and to keep monitoring the success of her decompression surgery back in February.

If you didn't know already, October is sb Awareness Month. Please note that THIS MONDAY has been designated a National Day of Prayer at noon for families living with sb. Please say a prayer for all these folks...it means so much to the families to know that they are being lifted up. We will also take "positive thoughts", if prayer is not your thing!

CeCe crawling.MOV