“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

All Clear!

CeCe had a GRRRRRREAT clinic appointment last Friday. She had another renal/bladder ultrasound to be sure her kidneys and bladder look good and that there isn't any reflux...and she rocked it! If she has one more good one (i.e. no uti or reflux) then she will be OFF the amoxicillin she's been on since birth.

We also saw ortho and he again liked the look of her bones and movement. He gave us a Rx for AFO's (ankle-foot orthotics) little ankle and foot braces to help her learn to stand and walk properly....she is going to have contraptions on from head to toe...literally!

We also got the dates set for our triumphant return to Philly for her 12 month study follow up....prior to going, though, she has to have a sedated MRI and her ENT wants to get down her throat and mess around while she's under too. This all makes me nervous, but neuro needs to see how her decompression surgery is progressing and ENT wants to make sure her vocal cords are still getting stronger. And, if yes, then she can come off her reflux medicine too...woot! Having the MRI done here in Charlotte will cut a day off our trip to Philly as they will just use the results from this MRI for their records too. So all of this will be going down on a Tuesday (not November 22!)between the end of October and mid-December...a huge coordination on the part of the hospital to get both these doctors in the same place at the same time.

Her head shape is getting better too. The back of her skull has really rounded out nicely already and the sides are coming along...she still will probablly have to have the helmet until right before her birthday...what a super birthday present that will be!

Check Out This show of sisterly SOLIDARITY! ---> ---> --->

For $25 you get Egg Roll

"I'd like to thank the Academy, my fellow nominees and all the little people who made this possible."-Excerpted from my Worst Mom of the Year acceptance speech 2011 (I don't want to get ahead of myself and think this may be my only winning year).

So, Caroline got in the car with Brian last Tuesday when he picked her up from school and she was wailing, "MOMMY forgot to sign me up for gymnastics!!!" Brian called me and asked what she was talking about? I had no idea...I wasn't expecting a comment from her like that for at least another 8 or 9 years. So, I figured maybe one of her little friends had been signed up somewhere and was telling all the kids in their class about (BTW, I loathe other people's children for this exact reason...time you knew that.)

Anywho, I guessed at who the little culprit might be and happened to see his/her Mom in the parking lot at drop off the next morning. MUCH to my consternation she said yes she had signed "little one" up and the classes are at school...during school hours...in the gym. THEN she tells me that the classes started the day before and EVERY KID (read that again...EVERY KID) in Caroline's class was signed up...except her. I pictured them putting her in a dark room alone during gymnastics hour as punishment for having such a LAME Mom.

So, I went to the Director and said "How was this publicized?" She said signs, flyers and a take home paper. Geez. Could I feel more like the scum on the belly on the worm at the bottom of the ocean (i.e. as low as it goes?).

So although we got there a round-the-back kind of way, it worked out GREAT!I didn't have to take her anywhere...all I had to do was pay my money (just $25 smackers a month) and she was set to be the next Mary Lou Retton!

So, the big day arrived and Caroline was SUPER excited to get to school for class. When I saw her that evening I confidently asked "How was class today...what did you learn?" To which she, laid down on the ground, pulled her knees to her chest and rolled around on the floor..."I learned Egg Roll!" And that, my friends, is what you get from a $25 gymnastics class that "every other kid in her class is in, that she would die alone if she didn't take, and stressed me out enough to think I had damaged her permanently (that will come soon enough)-gymnastics class.

You probably think this is going to be about helmets...

Dear Blog Readers:
Although you are few and far between, please allow me an indulgence with today's post without the fear that you will never return based on its content. I just feel like writing today.

Bear with me...here we go...
Why is it that when I'm driving in my car alone I compose blog entries that bring me to the brink of belly-aching hilarity and near-miss collisions, yet when I rush to jot down these little gems, they've completely escaped me. Today is such day....alas, I cannot recall what caused a fit of laughter between Exits 25 & 28 on my morning commute. Most often these posts jostle around in my brain in the form of conversations befitting an insane person just shy of their asylum admittance mulling things over with their multiple personalities. I openly laugh/smirk/hurrah etc out loud in public places, forgetting myself and my environment...lost in the teleprompter in my head. In these conversations, I've composed a thousand "resignation" letters (read:all the things you never have and never will say), dreamed of the day when I actually WILL stop my car and tell the person behind me EXACTLY what I think of their driving skills, and lamented about exactly how I will work the word "vociferous" into a blog entry (DONE!).

So, my friends, to sum up what today's entry is about...nothing.

By the way, CeCe had her helmet appointment yesterday and her new accessory will arrive August 10th. There, see...if you read to the end, you will get useful information! Au Revoir!

Date Stamped.

I seem to forget a lot of things these days...where I've laid my keys, why I'm now standing in front of the pantry (what in the world did I come over here for?)...But in my life there have been stand out moments that I've shared with fellow Americans and private ones shared with just a few loved ones. Do you remember where you were when the Space Shuttle exploded? How about when you saw the Twin Towers fall? These are events that bring very specific memories to me in time and space (8th grade in the hall outside my social studies classroom and Ballantyne Country Club while on a tour). I can remember them so clearly, yet often wish I couldn't.

I'm having some trouble sleeping. That's not really anything new, though. But for now I can at least point to why. Today marks the one year anniversary, if you will, that an ultrasound tech walked out of a room for 7 minutes while Brian and I reveled in the fact that we were having another girl before the doctor came back in, silently studied the images before him and declared..."Your baby has Spina Bifida, I'm sorry."

The whirlwind that began at those very words, is a moment in time frozen in my memory. I can hear his voice, I can feel my guts being ripped apart, and see what the doc keeps pointing at on the video screen as he relays to us what CeCe's future will be. The picture he painted that day was dim.

Now, ENOUGH OF THAT! CeCe is 7 MONTHS OLD, PEOPLE! She is the sweetest little joy you have ever seen and brings smiles and assurance to everyone that meets her. She loves people and feels compelled to put them at ease with her by offering an easy going personality and a bright and sunny outlook. She continues to get cautious kudos from her doctors at each visit and maybe, just maybe, remind them that it's not all about what they learned in a book.

As you know, she has had her struggles these past 7 months-4 surgeries, bowel issues, and she is in need of a helmet to correct some issues related to those surgeries. But, you know what...she is just about sitting independently, rolls all over the place, eats like a horse, I even saw her scoot backwards a little bit yesterday. I don't say all of this in a bragging way, I say it to emphasize a point. She IS NOT what they said she would be one year ago....She IS who she is...without asterisks or footnotes.

I'm lucky to be her mom...to get to see her everyday and dream of her future. She is surrounded by amazing people who have lifted her up when she needed it most and skillfully and gently brought her back down to embrace her every success.

Today is going to be a good day.

The video

As participants in the MOMs study, we were asked in March to send in a video of CeCe with a sign in the video that said "Somewhere Over the Rainbow" or "What a Wonderful World". It was shown to the staff and doctors at a recent meeting. These kids are just so inspirational...bring a box of tissues.

Here it is...cut and paste the link and enter the password.
http://vimeo.com/24723653
password is: cfdt

"That's everything!"

Just a quick note here. This gives me chills...

My sister, Gretchen (Gretel!), an accomplished Physical Therapist, was up to visit us yesterday. She was doing some work on her laptop and CeCe was sitting next to her in her Bumbo seat. Out of the corner of her eye, she saw CeCe point her feet and wriggle her toes. She said "Hey! She has Dorsal Flexion!"..or something like that. We had seen CeCe do this before and but didn't really KNOW what it meant. Gretchen put her few a few paces and said she's reflexing when she touches her toes and pushes back at her when she pushes her feet upwards. She seemed very excited about this and said CeCe seems to be responding at an S1-S2 level. I said that's great knowing there is also S3-S5 below that. So I asked..."well, what does that mean as far as feeling goes?" and she said "That's everything!".

Awesome.

16lbs and 2oz of perfection!

Not gonna lie...Brian and I were amped up about this appointment. We didn't know what to expect from CeCe's first sb clinic. In reality, it was probably the best dr. appt we've EVER been to. Seven docs came in and out in about 2 hours...that's better than the wait time at most of their offices!

CeCe weighed in at a perfect 16lbs, 2oz and 26 inches long (tall?)...that puts her right in the middle at the 50th percentile. They also measured her head circumference and she was at 42cm...right where thay wanted her to be.

The first doc in was the nutritionist...her very first comment upon laying eyes on CeCe's roly-poly arms and thighs was "I see we have nothing to talk about!" HA!

Genetics came in next-all three of them were interested in our participation in the MOMs study...they had offered it to patients before but they had never met anyone that had participated. We shared our experiences with them and that was that. Since CeCe doesn't have any additional genetic issues, they really didn't have anything to say to us.

I was very concerned with what Urology would have to say. Brian had to take her in early on Friday to get a bladder and kidney ultrasound....these tests always put me on pins and needles...90% of sb kids need some kind of bladder/bowel management program due to their inability to empty them completely causing infections and kidney reflux. In the 1960s, when sb was first getting any real attention, many people passed away due to renal failure due to this reflux. Today, for instance, although CeCe hasn't yet shown signs of infection, she is kept on a daily, low-dose of amoxicillian to keep any uppity bacteria at bay....a minimal annoyance for potentially amazing results...but I digress. The ultrasound tech said her bladder was empty (though I've learned not to accept this until the docs have confirmed) and then...the doc confirmed...kidneys are PERFECT and she is voiding all on her own!!! The Urology doc is a funny little guy....he's always in a very self-important hurried state and posturing to anyone else in the room....but he gives her good care and that's all we ask (most of the time.)

Neuro came and went, no change, no issues.

Orthopedics (bone guy!) pretty much came and went. She hadn't been seen by one of these docs since NICU...he said she looked and moved great and believes (like we do) that she CAN feel parts of the bottoms of her feet and toes. He saw no issues that currently need to be addressed.

The last doc was Physical Medicine. I had never heard of this before and it was explained that they are sort of like Advanced Pediatrics. She made sure CeCe was doing all her baby stuff...following objects, moving her attention to whomever was speaking and double checked her PT exercises...She commented that CeCe should be about 15 years old to have led the life she's led already.

So, A GREAT DAY! We head back to this same environment in 3-4 months...remember, she missed her first two opportunities to go to clininc because she was laid up in the hospital.

One of the best parts was getting to meet two other famalies. We met an 8 month old girl who was not shunted and had no other issues since her back closure surgery...she looked great...already eating table food, feeding herself and trying to learn to crawl. We also met another mom with her 3 year old who had just moved to Hendersonville, NC from St. Louis...Charlotte is the closest place for her for neuro. Her little girl was SUPER cute and got around with both AFOs (ankle foot orthotics) and a wheelchair. She wheeled herself ALL over that place like a speed demon...never slowed down...not once!

Anyway, that's about it...CeCe has some work to do now...gotta keep everything moving and shaking. She starts school on Monday!

ENT and School Update

CeCe had her latest ENT follow-up this morning. The good doctor, of course, wanted to scope her to check out her vocal cord movement and was pleased with what he saw. Her left cord is moving purposefully and functionally and her right is improving, although it's still not back to normal...yet. He expressed that he did think this would return in time, on it's own. He also said he has several patients that live just fine only having one functioning vocal cord. Then he added, very solemnly and dramtically...that although her speaking voice should be fine, she may have trouble hitting "the high notes" when singing. Ummmm, whaaaa? Brian and I burst out laughing at this one...To a family who hears something like this about their child for the first time, I can imagine that is may be tough to hear. To us? Excuse the pun....this was music to our ears! If this is all Little Miss has to deal with, we are ecstatic! Aside from the genetic impossibilities herein, there goes her diva opera career...or maybe she'll just have to be an alto! He didn't mean for this bit of news to be humorous...but it certainly was...to us. All in perspective, my good man, all in perspective.

Sooooo, all that said....CeCe has now been given a great big, giant, jolly green light to start "school" on Monday the 16th....which also means Mr. Mom is headed back to work. Boo! When asked how I feel about this as our new reality, my answer is...medium. The ENT said it best.."it's time to move on with all your lives and she can't live in a bubble"....so, to school she goes and we'll see how it goes. I bet she rocks that baby room...afterall, she's so worldly!

Pushing up and rolling off!

CeCe had another 6-week neuro follow-up yesterday. The neuro said her ventricles are still smaller than he'd like to see them so they needed to dial up her shunt...so she's back to "CeCe 2.0"! I know this seems counterintuitive since the hydro caused her ventricles to be "big"...but there is such a thing as too small. It can cause her shunt to clog more easily forcing an emergency revision...something we DO NOT want her to go through. The doctor has us watching/listening out for any changes she may experience because of the shunt adjustment. He also checked her kick reflex and liked what he saw there too...she pushed back at him with her legs when he ticked her off!

Bright notes this week...Monday-Little Miss is pushing herself up when she is laying (lying?) on her tummy...she used to just fall asleep. You should have seen the three of us (Brian, Caroline and Me) kneeling in front of her cheering her on....a Broadway performer should play to such an ovation! THEN, to top that, Thursday-she is rolling from her belly to her back! No more relaxing on the ottoman for her! She makes us proud everyday...what a joy!

We head to ENT next Friday and clinic the Friday after that...I'll update then!

Detour

A friend passed this along to me today....this is the perfect description of raising a special needs child...

WELCOME TO HOLLAND!

byEmily Perl Kingsley.c1987
by Emily Perl Kingsley.
All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned. And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

5 months old

Holy cow! CeCe will be 5 months old tomorrow! Sorry for such a long delay in posts, but this really has been a case of "no news is good news"!She has come so far in such a short while. She came for a SURPRISE visit to my work today...I got giddy when I saw Brian bringing her around the corner. She had been snoozing in the car and hadn't awakened fully yet...she's such a cute little sleeper.

She had her weekly PT visit yesterday and she is doing really well. We still have to do her exercises several times a day to keep her movement and strength up, but she is responding very well and they are pleased with her progress. She has "graduated" to 10-15 minute intervals in her exersaucer and some time in her Bumbo seat...all this is to help strengthen her core and neck...but also to give her some different views of the world. She loves to be on her belly...but only to sleep! We try to put her on it to get her to lift her head and tone everything up, and she abruptly falls asleep almost without fail.

She's potentially got some big changes coming up. She goes back for another round of check-ups May 6-13. The ENT is first (and sort of the most important this go around) on the 6th. He will scope her and determine if she her vocal cords tone and movement have come back enough for her to be able to attend school and for Brian to go back to work. Her stridor is still present now and then and I'm truly not sure whether she'll get the thumbs up or not...We want to make absolutely certain she can withstand a cold without putting her airway at risk. She also has a neuro follow-up on May 5th (I think) and her very first sb clinic on May 13. She'll get to meet with all her docs in one place there and some for the first time. If all of these go well, she will start school (where Caroline goes) on May 16th.

Sidenote: I "met" the mom of another kid with sb and she says she never capitalizes "spina bifida" because it gives it too much credit and I've decided I'm going to do that too...I like the way she thinks.

Anyway, that's about all that's new in our world...please pray for her in the coming weeks and for the doctors to give us strong direction.

4 month update

Not too much here....CeCe had her 4 month pedi checkup and is doing great! She's gained about a pound and a half since her last hospital stay and has grown almost 2 inches since January....what a beast! The doctor said he really liked seeing all her leg/ankle/hip/toes movement (we can't hear that enough) and really not too much else to report. It was such a relief not to have the appointment end with an emergency (or soon to be scheduled) hospital visit.

Her doctor also mentioned for the first time that he is on the national SB association board ( you think you know someone!) and he wondered if Brian and I might be interested in starting a Carolinas chapter...it's definitely something we've talked about before and are now considering again with his help. Anyone out there know anything about taking on a huge endeavor like this??? We'd really like to help folks going forward with a place to connect and find answers. Something to think about...

More soon!

Nothing to report!

How's that for a headline! CeCe is doing very well (everybody, knock on wood!). The last of her surgery strips came off today, just in time for her first pictures...ok, ok...her first PROFESSIONAL pictures :)! While her stridor is still there on occasion, a little reminder of where she's been, it's much quieter.

She starts PT at the house tomorrow and we are looking forward to having them come every week so she can keep hitting her milestones. She struggles to hold her head up but we can see progress there already. Oh yeah, and she GIGGLED this week More of and "henh hehn" than a "HAHA"...but music to our ears nonetheless.

Don't tell Brian, but he think he is enjoying his Mr. Mom status. He was very excited to have a playdate at the park yesterday and is looking forward to another one on Thursday. He came home talking about recipes and hair salons! Ok, no he didn't, but I think he really did enjoy the time he spent with another family. Thanks, Tiff!

Check out her new pic to the right....Gooooo CeCeBe!

Cautiously Optimistic...

Today is a day to give both science and religion a pat on the back! They both came together today and gave CeCe a good, yet cautious, report. And, we'll take that..thank you very much.

Brian reported back from the ENT appointment today (I'm back to work) that the ENT was "very pleased" and "optimistic" about CeCe's progress. The doc scoped her again and he (and Brian) were able to see much better function/movement in her vocal cords then when he scoped her right after her larynx surgery on February 8th. He believes she will return to full capacity and function, but is not there yet. What does that mean? NO TRACH-TALK TODAY!!! He did stress that we are not out of the woods, but that we are on the right path. We still have to be mindful of her eating and swallowing habits as these are the first signs that things maybe going downhill. He (like neuro) can't explain why the stridor is back...just one of those things. By the way, he also does not want to see her back for 3 W-H-O-L-E months! And, neither do we!!! We pray she doesn't have symptoms that push us there more quickly.

I was expressing my frustration for all CeCe's been through to a friend at church who's a nurse this past Sunday...she said something that will stick with me....she said, "the docs try things that have worked on other people's kids and hope they will work for CeCe." And that, my friends, is kind of the definition of "practicing medicine", yeah? It's all about perspective. Thanks, Sallie.

On a sidenote (you know I always have a side note!): Being back to work hasn't been as hard as I thought it would be...Brian has made this transition so much easier just by being the person he is. I treasure all the time we had together as a family these last 3-4 months...but I know our girls are in good, strong, loving hands. But, I miss you guys like crazy!!!

We've had a bit of a scare.

I didn't post anything on Saturday about this, but we heard CeCe's stridor return a bit that night, and it scared the heck out of us. In addition, her incision started to look a little bit different and we were worried it was the beginning of an infection.

Brian took her to the neuro today and he said the incision looked that way becasue the surgical steri strips were irritating it...really no big deal.

About the stridor...he did say that it "may come and go" and does not neccessarily mean the Chiari is symptomatic (i.e. that we are back where we started) but we do have to be on alert for all of the same things we were before to make sure we don't miss any signs or symptoms. He said that kids can have a stridor until they outgrow it at 2-3 years of age but that we still can't rule out a trachesotomy and/or feeding tube. Just like everything else wth SB...wait...and...see.

She has a follow-up appointment with her ENT on Monday and he may decide to scope her again then. She hates it of course, but she is so tolerent each and every time. Let's all hope he says she's rocking it too!

Feeling better!

CeCe is feeling so much better today than just a few days ago. She is moving her neck quite a bit by herself from side to side and lets us move her almost to her full range of motion. Her incision is healing nicely and doesn't look as "angry" as it once did. She seems contented, smiley and back to her delightful self...SUCH a change from a week ago.

Our friend, Jennifer, gave her the bib in the new pic and we just love it...thanks, girl!

Her next appointment is Tuesday with neuro for her surgical follow-up...please keep her in your prayers!

Headed Home!

We are just about out of here! Everyone came by and signed off that needs to and we are just about to load the car. CeCe is smiling away and ready to be home. What else can I say?!?

On the mend...

CeCe is finally getting some rest. She had a great night with no interruptions and went back to sleep after her breakfast. Her BP is down (still a little high) and her heartrate is really stong. She only has the smallest stridor when she's REALLY worked up.

The rounding peds docs just left and have cleared her from their standpoint to go home later today. BUT, they have to defer to neuro and we have to wait until they come by to give us the full thumbs up. I keep peeking out into the hallway to see if they are on the floor...I am going to ambush them as soon as they step off the elevator!

Hopefully I will update from home later today!

Houston, We have a smile!

This has been long awaited by us for her to show us she's on the mend....waiting on the rounds docs to come by. She had an ok night...still not sleeping very well and they had to give her a new IV line at 2am...you probably heard her whereever you were at that time!

Not too much to update

CT Scan came back and her ventricles look good...they can also see that her cerebellum has the room it needs....good stuff there. BUT, they can't explain why she is vomiting so much so they are checking for a gastric blockage, urinary tract infection, and just a plain ole virus. Neuro said she is ready to move out and about from her crib for feeds to get her neck moving again. Still waiting on uro to report back from bladder and renal scan also.

She's having a rough day today. She's not eating and cries when she tries to poop and nothing comes out. They've got her back on IV pain relievers since she couldn't keep the oral ones down and she hasn't slept but 30 minutes since 4am...not a pretty picture.

Still waiting for her smile to return.

Overnight

Although CeCe's numbers stayed good, she started vomiting everything she ate including her meds from about 8:00 on. They had to put the IV back in her about 3am so she wouldn't dehydrate. Neuro has since asked for yet another CT to check the shunt and they will be taking her down at about 5:30am so they can get the pictures for the rounds docs.

Quiet Sunday...literally.

All of CeCe's docs converged at onCe around noon today. They are still watching her very closely to be sure her heartrate and bp stay where they want them...and she hasn't really dipped all day. She will not moved her neck at all and cries when you have to pick her up and move her the slightest bit, but they assure us that's the best thing for her right now. Neuro thinks she's on a great path and she just needs some time for her body to equalize.

We were also able to have her urologist come by to check her out since we keep having to cancel her office appointments because we have ended up in the hospital. He is going to go ahead and run her bladder ultrasound tomorrow that she needs updated to be sure nothing has changed there. Please pray for this for her.

She still has the slightest bit of stridor but we can already tell it's better than it was just yesterday and she's eating full feeds without coughing or sputtering...GOOD STUFF!

**Side Note** There was a group of student nurses here today and they all wanted to see and listen to CeCe...most of them had never heard stridor and hadn't seen an SB kid. They all peered in at here and whipped out their stethoscopes. She's such a rock star!

If you are interested...

I found this on the Mayo Clinic's website fairly closely describing what CeCe had done....it's not too overly graphic either...

http://www.mayoclinic.org/chiari-malformation/treatment.html.

She's is doing "ok" right now...the docs haven't come through yet this morning...but you could tell she was really in pain last evening/night and the docs hadn't written for any pain meds. The nurse had to call and call to get them to call back so they could even give her Tylenol. She woke up about 3am and they were able to dose her agian. Her heartrate is still of concern and has set off the alarms several times during the night as it dipped below the monitors limits, but she brings herself back up (i.e. no outsude assistance) but even then she stays on the low side for what they like to see. She also doesn't want to move her head and neck at all from side to side...crucial to help her heal properly...can you blame her?

Neuro is going to be consulted again today to get their opinion this morning. I'll post agin after rounds/neuro consult.

Movin' on Up!

CeCe was moved up to the "Progressive" floor! She does have a little stridor, but NOTHING like it was...the nurse said it just sounds to her like a child who had just had an intabation tube removed. Her heart rate and blood pressure are still a bit out of whack, but they are watching her very closely.

She is moving her head and neck some, but you can tell she's sore...she did cry (for the first time since Tuesday) this afternoon. But, she is smiling more and so happy to be held.

I got to go home for a few hours and be with Caroline....who now has a wicked cough and will be heading to the doc as soon as possible...great.

There's talk about us going home on Monday! That's all for now!

Morning rounds..a good night!

They were able to remove CeCe's NG feeding tube last night and reduce the oxygen she was needing to the lowest setting....then when we came in this morning, they docs decided to take her off all her meds, cannula, and even removed the port in her foot that they keep as a "just in case" measure should she need IV drugs and such. A good thing too because her little foot had swelled up over night where the port was and her right foot was a deep purple because the O2 wasn't circulating properly. Once they removed it....it turned right back to pink.

She ate a full breakfast and went right back to sleep. The Intensivist doc said he thinks she is ready to move out of the ICU onto another floor, but wants the blessing of neuro and ENT before doing so...who knows when they'll be by?!?

Let's keep this train rolling!

Deep breath

The docs turned off all of CeCe's meds today about 5:00am with the thought that she would be ready to extabate about 7:30am...but, CeCe had other ideas. They expected her to wake up fairly quickly on her own and that wasn't happening. In addition, her heart rate was dropping into the low 60's and her blood pressure was WAY up....like 155/95.

The docs weren't liking what they saw and described it as a triad...bp + heart rate + respiration=proper shunt function....and the respiration part was missing since she was on a vent. So the neuro adjusted her shunt again and they sent her for a CT scan to check the setting. This is on THE OTHER SIDE OF THE UNIVERSE from her room in the PICU. So they rolled hear down there and while she was in the room her heart rate drop quickly to 50 and the monitors started screaming and beeping. Brian and I could her them from outside the door shouting at one another, but we couldn't understand what they were saying. They came out and said we needed to get her straight up to her room and we rushed back. Her numbers were a bit all over the place on the trip back and it got pretty scary....All the docs came in the room and started watching her and slowly but surely her numbers began to even out.

They decided at that point to go ahead and extabate. They had all the "just in case" meds at the ready and re-warned us about what we were about to see. CeCe was a champ! She was fully awake, with the tube and she just started sucking on it like a binky...then they slid the tube out and she just sort of looked at them....no crying, just staring at them.

So, she is resting now with intervals of alertness and we are just watching her like a hawk. So far, no stridor, no chest retractions....all good. Hopefully her ENT will come by later today and assess from his point of view...I think she looks good....squishy, pink and sweet.

Tomorrow...

They are going to take CeCe back off her feeds at 5:00am with the hopes of extabating her around 7:30 or 8:00 (hospital time). I am going to have a conversation with her respitory therapist tonight and get his thoughts about letting her stay intabated through the weekend to give her body more of a chance to heal on her own first...again in an attempt to avoid the trach. But, they do have her on the ENT's surgery schedule for 4:00pm tomorrow just in case.

Morning update...a "yea"!

The rounds docs came by and decided they want to leave her intabated another day to be sure the swelling has gone done and give her the best chance of avoiding the trach. YEA!

So, they are going to keep her mildly sedated with a different drug that will make it easier for her to "come around" when they are ready to go tomorrow.

Neuro came by after reviewing her CT scan from this morning said "the scan looks just how whe would want it to look. No swelling, bleeding and ventricles are small." DOUBLE YEA!

She looks a little puffy, but opens her eyes now and then if there's a loud noise or the nurses are messing with her. She seems to be taken it all in stride and tolerating this life interuption.

Overnight

CeCe had a good night. They have adjusted her feeding tube in anticipation of her being able to "eat" again today. But, they want to wait until after her 8:00am(ish) CT scan ( at the incision site) to be sure she's ready.

Today is a BIG day for her again. They have decided to extabate her (remove her vent and allow her to breathe on her own) but we have already been warned by multiple docs and nureses that this is a tough process to watch and kids respond in different timeframes. They are first going to scope her again to check the amount of swelling etc in her airway to be sure they can re-intabate her if necessary. Then, they will slowly bring her out of sedation until she is fully awake and is ready to try breathing on her own. This is the scary part...she's going to be waking up with tubing going every which way and this will make her anxious and stressed and probably try to pull things out. If she does alright, they will pull the tube and...viola...she is ready to go. If not, they will have to re-intabate and then consult with the ENT about the tracheostomy.

Three things we need prayers for today...easy extabation-no trach, no infection, no leakage at incision site....let's call it out, people!

CeCe is out of surgery!!!!!

She came out of surgery right on time and the doctor said she did great. They did have to give her some blood since her hemoglobin was a bit low. The anesthesiologist said this often happens and is no reason for concern. He also said..."She was my daughter when she was in there, but now I'll turn her back over to you." How awesome is that.

The neuro said they had to shave part of her skull and the back arch of C1-C5 and a tiny bit of C6. That was more then I expected, but he seems very hopeful that this will "fix" her issues. He DID NOT have to go into her dura either! A HUGE deal in that he didn't have to open the covering around the brain nor harvest a patch (or use a synthetic one) which is very positive.

We haven't gotten to see her yet but expect to go in within a few minutes. Please continue to pray that she does not develop any infection or have an leakage at the incision site and that this did actually fix the vocal cords and stridor.

Out of MRI

CeCe is doing fine...the MRI and xray took over 2.5 hours...and they were delayed in starting. She is on a vent which is breathing for her at the moment, but is sedated, of course, and resting. They have also restrianed her arms so she can't accidentally pull her tubes out.

We have emailed the MRI results to her Philly neuro for one last look but we are not sure he'll be able to get the look he needs or that he'll have a chance to view it before her surgery tomorrow. Either way though, enough people have convinced us that she needs this surgery and we are ready for it (as much as we can be).

***Sidenote***-One of her alarms just went off and when I asked what that meant, they said she was coughing...we couldn't hear a thing...weird. She also opened her eyes for a momment before they gave her more meds and it was so nice to see her baby blues.

Anyway...the nurses and doctors remember us from last time which is sort of comforting and all have asked how she is doing...

I'll post more tomorrow when I can.

Procedures scheduled...

CeCe's MRI will be on Tuesday at 4:30pm and the decompression surgery will be Wednesday at 7:45am. They have decided not do the trach unless necessary and hopefully this is something we can avoid altogether. We are of course anxious for these procedures and praying that CeCe responds very quickly witht he stridor going away and her vocal cords regaining tone and movement.

I'll update all I can from the hospital.

More tough days to come.

Our neuro report/appt. yesterday did not go that well. He thinks CeCe's only option at this point is the decompression surgery. He will also be consulting today with her ENT to discuss her need for a trach.

He went ahead and added her to his schedule next week for an in-hospital MRI on Monday and the decompression surgery on Wednesday. Brian and I are weighing everything he has said and just got off the phone with our neuro in Philly and he agrees with everything our neuro is telling us. He also said that they only see this in about 10% of SB patients.

The neuro also said that he can't guarantee that this will make any difference with CeCe's issues...in fact, we may not know for months what the results are of the surgery as it can take that long for her body to respond. If the surgery doesn't help her chiari, she will most likely end up with a trach and a feeding tube and we wait to see if just time and growth will help her then.

Not sure what else to add at this point, we will post an update as soon as we have more information.

Back from Neuro and ENT

So...nothing too new here. ENT is still thinking she will need a trach. Her vocal cords are not moving well and he is VERY concerned that her airway will be compromised if she gets any kind of cold or worse, RSV. While this is a relatively simple operation, but the care at home is HUGE. She has to stay in the hospital for 5-7 days, mostly to teach us how to care for her. We will also have an in-home nurse that will come by to check on her throughout the coming weeks. Becasue this is such a real possibility, Brian will not be returning to work for at least 14 more weeks.

Then we went on to neuro where they adjusted her shunt again to try and maximize the draingage. She's now a 1.0! We will go back on Tuesday afternoon and she will get to meet with her neurosurgeon (he's been out of town during all of this) and get his thoughts and advice. We think he is going to say she needs the decompression surgery and if he does, we are going to get a second opinion either at Duke or back in Philly.

This has been a crazy week for little Miss, and we pray next week is better. Till then...let the shunt do it's shunting!

Super quick update...

We have an ENT follow-up tomorrow at 9:30am where we will discuss the trach and a neuro appt on Tuesday at 3:45pm where we will discuss the MRI and the decompression surgery.

Please pray for our family.

SB News

Spina bifida has been in the news a lot today. The MOMS study released a an article in "The New England Journal of Medicine" that concludes that fetal surgery is better for a fetus with spina bifida. We knew this was just around the corner as we heard about it the week after Christmas. Here are some of the stories if you want to check them out.

http://www.nejm.org/doi/full/10.1056/NEJMoa1014379?query=featured_home

http://www.nytimes.com/2011/02/10/health/10fetal.html?_r=1&hp

http://www.msnbc.msn.com/id/34276015/vp/41499228#41499228

This has really thrown me today...probably partly because we just came out of the hospital. Since CeCe was in the post-natal group, all the wonderful things they are talking about don't apply to her. Which brings me to today. I have spoken with her neurosurgeon in Philly and he believes that her stridor IS related to her Chiari and that she will need the decompression surgery. She needs an MRI to really know what's going on. Of course, I've already called her neuro here and am waiting for them to call me back. The MRI will give them a much better picture of what's going on....I wished I had called Philly sooner as he believes the larnygo malacia was related too and maybe we could have spared her that surgery.

Brian and I are moving through as best we can and we will be considering what we need to do as a fmaily as we go forward.

"The Beast"

When I was a kid we used to go to an amusement park called Kings Island. It had one of the old-fashioned, Coney Island style, wooden roller coasters that was once touted as the biggest, fastest, blah blah blah coasters in the mid-west...or something like that. It was called "The Beast". I was afraid of that thing for 2 summers before I got on it. It jerked you around for 2 and a half minutes before depositing you back at the start, breathless, with your hair standing on end....that's how we felt yesterday.

BUT...

Once you rode it...you felt more prepared going on it the next time. You knew where the dips and turns were and the spots where your stomach dropped. That's how we feel today.

I've decided SB is just like The Beast. But for now,WE ARE HEADED HOME!

This morning they were going to move CeCe out of the ICU and up to a regular floor...but after neuro poked around, she aced her swallow test, and ENT put in their two cents...we got the okie dokie to head home. CeCe still has quite a stridor (in fact the folks from Respiratory Therapy keep looking in the room as they pass) her airway is open and her O2 is 100%. All the scary scenarios are still very real possibilities, but not today.

Thank you all for your prayers...once again, we owe you one.

Not too much to report

CeCe is doing ok...the stridor is still the same. She will have a barium swallow in the morning sometime. Basically they will feed her while watching to see if she swallows correctly and making sure she doesn't aspirate into her lungs.

The ENT and neuro docs will check on her in the AM and decide what to do from there. That's about it.

Admited to Pediatric ICU

CeCe had her surgery today for her laryngo malacia and it went well. The surgeon came out and said it went very well. He had me a little upset right beforehand saying that he was concerned that it would be related to her Chiari and Spina Bifida when he had told us two weeks ago that it was in no way related. Geez.

She was in recovery and the stridor seemed to be gone...then she woke up. The stridor is still there in full force indictating that something else is also going on. The ENT came back by and said the sound was consistent with a problem with her vocal cords. He scoped her again (with us in the room, ugh) and said that he could see her left vocal cord move but her right one has paresis (sp?) Everything goes sort of fuzzy from here...

What this means is:
a. she made need a trach tube
b. she may need decompression surgery for her brain to have more room.
c. her shunt may need to be adjusted b/c the fluid in her brain is pushing on her vocal cord never and causing the "weakness" (or paresis).

Neuro has been consulted and they came and adjusted her shunt again. Their hope is that if they relieve the pressure, the stridor and paresis will be fixed....THIS IS WHAT WE SO WANT IT TO BE. The alternatives and decisions we face otherwise, are too much for me to comprehend right now.

Please keep CeCe is your thoughts and prayers.

Surgery tomorrow

I hate that she is having to go through this, but she sounds so awful...I'm glad she'll be fixed up tomorrow. She's scheduled first since she is the youngest one....so be praying/thinking about here at 7:00am! I will update the blog as soon as I can.

Sidenote: Remember we don't get phone calls, emails or texts at the hospital until we can go outside and find a signal.

Here we go again...

I just got off the phone with CeCe's ENT and they want to move her surgery up a week to Tuesday, February 8th. She just isn't getting any better. So she is going to have a super epiglottis plasty (sp?)to loosen the area around her larynx to help her Stridor. She sounds just terrible right now and they said she'll be better that night but may have some swelling that will bring the noisy-ness back on days 3-4 post surgery. We won't know until she is in recovery if she will have to stay the night.

I'm sad for her...poor thing has been through so much already, but if she needs, she needs it. They at least were able to get her in the first morning surgery spot at 7:30am (arrrival at 5:30am) she doesn't have to go thru all the NPO nonsense again like last time.

Please pray for our sweet girl...she's a tough one!

CeCe 2.0

That's what Brian is calling her. We went to neuro today and they needed to change her shunt again...to the 2.0 setting. The numbers are a measure of pressure and when they dial it up, the shunt drains more slowly (which seems backwards to me). They started her at 1.5 then moved her to 2.5 (the highest) in the hospital last week because she had some fluid between her brain and the dura and thought she was being "over-shunted"...draining the fluid to quickly.

So, when they checked today, her ventricles were a bit bigger (again) so they decided they needed to meet in the middle to try and balance her out. They won't check the setting etc again for 6 weeks since they have already seen what the other settings will do...and also they don't want to expose her to anymore radiation then they have to.

I asked what "fluid on the brain" means for her future and couldn't get a straight answer. The P.A. said kids that don't have SB and don't have a shunt can have the same thing and it doesn't really mean anything significant to them. I need to do more research on this one.

On a side note, I have a co-worker whose daughter is in the ICU (and has been there going on three weeks now). She is 8 years old and is in a medically induced coma because they can't stop her unexplained seizures. Her name is Brooke and she needs your prayers too.

How did she get to be 9 weeks old?

CeCe had here re-scheduled 2 month pedi appt on Monday...He checked her out and said she's looking great. She has hit all her smilestones :) so far and she took her shots like a champ. She's up to 10lbs 12oz too...what a beast!

She also had her follow-up visit with Early Intervention and she brought a Physical Therapist this time around. She re-evaluated her since she hasn't been looked at since she was 9 days old at CHOP. She said she was impressed by her leg movement, but still needs work to loosen her hip, knee, and ankle joints. The knees were new to us, but just means we need to add another exercise to her rapidly growing repertoire. It's funny that all the docs say..."it will only take a few minutes a day if you add this or that" That time swallows up 24 hours VERY quickly.

Next up....neuro tomorrow....

Back from ENT...

The pediatric ENT has agreed that CeCe does have laryngomalacia and on a scale from 1 to 10...10 being the most severe...CeCe is a 9 or a 10. He basically had to re-run the endoscopy and we watched with him on the monitor as he looked around in there...weird to watch and see her crying from the inside out! He also confirmed that her vocal cords are working normally (which we thought had already been confirmed) but he wanted to double check as there was 20% of her having that issue as well. Please remember this has nothing to do with her SB...lots of kids have this.

So, where do we go from here? They want to put her on some very pricey medicine for the next 3 weeks as well as saline nasal spray to clear up her congestion...poor kid is having a rough time with this cold...and then we will go back for his re-evaluation on February 11th.

**Sigh**...if she isn't any better (or better enough) he will have to do a surgery on February 15 that will snip the area around the larynx and fix it that way....which of course means another hospital stay. We've gotten to know the nurses already...I'm not sure that's a claim to fame we really want to have. That's about it for now.

Deja Vu...2

So after some crazy potential diagnosis and treatments...Cece has been diagnosed by the Pulmonologist with larngynomalacia. Basically this is a "floppy airway" on her larynx causing her airway to be slightly blocked. They don't seem to plan on doing much right now with it. Most kids grow ou of this by the time they are 10-18 months. I cannot tell you how releived we were to hear this from her doctor. Just today they said (all which have proven to be false) she had vocal cord paralysis...she may need to have part of her skull removed to relieve pressure on her cerebellum...she made need a permanent trach tube....goodness gracious, what a day!

They are keeping her here overnight at least for oberservation as she still is has the Strider breathing issue...probably an upper respiratory infection...not enough to keep us here after that....YEAH!

Once agian...thanks to all my prayer warriors...God is good!

Deja Vu...

We are back in the hospital. CeCe started having breathing issues over the weekend and we took her to her pedi yesterday morning. He at first thought it was croup. But then he thought there might be a Spina Bifida connection and sent us straight to Levine's...do not pass go...even asked if we wanted to go in an ambulance.

We got to the ER about 10am and they did an xray of her head and chest and a CT scan. Thay also consulted with neuro and ruled out the shunt. They decided to admit her and we were sent back upstairs. Some of the nurses recognized us from her shunt surgery days...not sure if that's good or bad.

Since being admitted, they've given her 2 breathing treatments (her little chest compresses about 1-1.5 inches when she's upset and trying to breath in), xray of neck and side chest (this was awful to see) and a have sent an endoscope up her nose to look down at her upper airway (double awful to see). This is where they found something. The ENT said that her vocal chords appear to be paralyzed or partially paralyzed. BUT, he can't say if that's related to the virus, she has always been that way and now it's just surfaced, or if it's a connection to her Chiari malformation in her brain. So, he really just presented a ton more questions with very little answers. The pulmonologist will look at her today. She will have to be sedated so he can look below the vocal chords and see if there is any other kind of inflammation. They are also, of course, testing her for RSV, flu, and croup.

I'm just waiting to see the morning doctors now....

CeCe's dedication was today...

We had such a great day today with family and friends. CeCe was dedicated at church today. Below is the text from our part of the service...

When we first received CeCe's diagnosis last June, we were devastated. We knew nothing about Spina Bifida...we didnt know that it is the #1 permanently disabling birth defect....we didn't know anyone that had ever had it.....and the picture the doctors painted was bleak. They told us things that no parent wants to hear about their unborn child. But God was there even then...He was working to teach us patience. He was testing our resolve. He was testing our Faith.

Brian and I rushed straight to Doug's office after leaving the doctor's office that day last June trying to make sense of it all...trying to figure out...why her, why us, why now? Doug said something that day that will be forever burned into my memory...he prayed with us that this baby would "confound" her doctors. I don't know if thay have felt so confounded, but I know we have. We did the only thing we could that day...We gave her to God.

Fast Forward to today....while there is still so much of CeCe's story yet to be told, she is here with us today as a testament to God's grace, his will and the prayers of his people. I asked Brian this week to pick one verse that he thinks sums up his feelings about today and he chose John 13:34-35 A new command I give you. Love one another. As I have loved you, so you must love one another. By this all men will know that you are my disciples, if you love one another.

We will never be able to begin to thank you all for your love, prayer, and support for Little Miss CeCe. We have felt wrapped in your and God's warmth from the diagnosis. What a blessing we have been given to be part of such a church body.

CeCe has had people all over the world prayng for her...family, friends, and even strangers. They have followed her story and our journey and she has touched people's hearts in a way we never knew was possible. We truly, with all our hearts believe that she is a direct result of the prayers that have been lifted up to God. HE made her prognosis better and better at each doctor's visit. HE calmed our minds and soothed our thoughts. HE allowed her doctor to exclaim...:this child will walk!". The bible verse I picked has been guided me throughout this time is...Isaiah 40:28-31 Do you know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew thier strength. They will soar on wings like eagles; they wil run and not grow weary, they will walk and not be faint. This is the prayer I pray for my daughter, my miracle.

You are truly God's people and know that as you have been there for us, we promise to stand by you...know that we've got your back.

17, I counted.

That's how many Doctor's appts./hospital visits/tests etc...since we've been home. And, yesteday was her repeat audiology newborn screen...and....SHE ROCKED IT. In fact, if she didn't pass with high enough numbers, they would have sent her for another diagnostic test at another office and yesterday visit would have been useless. But...nooooooooo! The doc said her numbers came back very quickly and she passed with flying colors...so, we are DONE with that guy! Mark him off the list!

We have a follow up with the Early Intervention (EI) people on the 25th and she has a followup with the neurosurgeon and an ultrasound next Monday. This appt will double check that her shunt is set at the proper pressure setting.

She's also going on a field trip tomorrow so the girls at my work can get their hands on her....hi, ladies! Remember to use your hand sanitizer!

The Trial is over....

I don't know why I am in such shock about this, but the trial we participated in ended right before Christmas...way early.

Every 6 months, the NIH (or something like that) comes in to review the data of the study to see if there is a clear answer as to if the pre-natal or post-natal surgery is better. It seems that they decided the benefit vs risk of the pre-natal surgery is worth it. When I first heard this on Friday (as rumor) I was really taken aback...kind of upset actually that we were told just 6 weeks ago that there was no clear benefit to those kids that received the pre-natal surgery vs those that didn't...and then BAM! the trial ends early (they only got to 183 of the 200 particpants) and they are done.

We will still be going back for the 12 and 30 month evaluations, but no new folks will be allowed to participate. Another weird thing is that people can now CHOOSE the pre-natal...we didn't have that option. Brian says I'm crazy to be bugged by this, but I will probably always wonder. God has watched out for us through this entire process and that's all I really need to know.

I spoke to the study coordinator today about all of this and she said they are going to be sending out a letter to all the 183 families to inform them of this once the data is ready to be published. It has to be "out" before they really make it public, so for now, it's just word of mouth that it's over. I hope that "they" will now take some of the money and put it towards reseach for those kids that are already here...wouldn't that be awesome.

CeCe has her Early Intervention evaluation tomorrow and her repeat audiology testing (she failed right before we left Philly) on Wednesday. I guess that's it for now....

By the way...Happy New Year!