The Walk N Roll

Walk N Roll-Team CeCe

So I'm just going to put it out there at the BEGINNING of the post instead of beating around the bush and lazily putting it at the end as if it's an afterthought.  We need you, people!  We need your care, your time, your (tax deductible) dollars and your strength to make this happen.  The Walk N Roll is just around the corner and SuperGirl needs her supporters or she will cry....she'll cry loud and long...she'll cry until the seas fill with saltwater (oh, wait...that's already the case)...then she'll cry until you can hear her wherever you might be in the world (oh, wait...she's pretty loud, so that's probably already happening too and not going to light a fire under you).  So, whatevs...just participate!  Walk with us, pray for us, donate...DO something!  Got it?  Clear?  Good, Great, Grand!  Moving on...that is all (for now).

Photos from our trip

SuperGirl!

Ready to take on the docs!

Broadcasting live from CHOP!

"Seacrest, OUT"!

Leaving victorious!

Loving on Grover at Sesame Place

Family vacation 2013

We came. She walked. She kicked their butts.

When we arrived in Philly we had high hopes that what we already knew to be true would shine through in front of the right people…and it did.

This will for sure be a more medical update then entertaining life story post…

First Challenge-Developmental exam-During this testing phase CeCe ran the cognitive gauntlet as they tested her brain’s abilities.  Remember that children with sb can have learning disabilities in both math and reading and reading comprehension. 

Essentially the Bayley Scales of Infant Motor Development test was used to evaluate her skills.  A quick summation of that test—“She was asked to do a number of activities to see if your child’s thinking, language, and moving (sitting, walking) skills are similar to children his or her own age. Some of the activities your child was asked to perform may have seemed very easy while some of the activities may have seemed very hard.  No child is expected to do well on every activity.  You may also have been asked questions about your child’s social skills (such as expressing emotions or talking with others) and behaviors (such as playing with others or dressing). These questions help us find out your child’s range of skills. No child is expected to successfully show every skill.”

First appointment-Day 1-Cognititve

Here’s how our girl rolled….

·         Colors-Knew ‘em

·         Gender Roles-Got ‘em

·         “-ing” verbs, opposites-Nailed ‘em

·         Pronouns, Plurals, Possessives, Plural Possessives-pCheck, pCheck , pCheck! (The “p”s are silent). J

Moving on…

·         Finish the picture-having her brain “fill-in” missing lines in a stick picture —completed all of them

·         Heavy & light, size & proportion—all by looking at flip book pictures-they were weighed, measured and laid to rest

·         Puzzles-finished them before all the instructions were complete!

·         Tower building-7-8 tall cubes tall and 12 in a straight line and on the diagonal

·         Concepts of in front, behind, and to the side-busted all of them

A little bit tougher…

·         Threading a string of beads into a test tube-she tried to STUFF them in J

·         Drawing/Mimicking a straight line-She scribble/scrabbled.  They asked me about how she crawled when she did this.  She crawled with her thumbs tucked under, always…even today if she does it.  The lack of strengthen of the fingers when a person crawls with their hands flat out they thins caused this…but who cares, right?  She’ll learn a straight line when she’s good and ready

·         Drawing a circle inside another circle-See reasoning above.

·         Building a bridge out of blocks

The evaluator said that most of her skills on are a four year old level…she measured at her age level except for “drafting” (making a straight vertical or horizontal line with a pencil as explained earlier due to her crawling technique) for which she tested below her age.

Second  appointment-Day 1-Physical

Next up we saw a very militant PT/OT…a woman of significant years that has obviously heard and seen it all.  Chit chat, discussion of the weather and extraneous comments of any kind are all on her prohibited list.  All business all the time.  She came upon us very abruptly and when I asked if she remembered us, her response was “Well, I remember her (CeCe)!” Alrighty then…DISMISSED!  Moving on…The first thing CeCe did for her was run…around and around and around.  HA!

They filmed this next part to be sure that all the kids’ evaluations are the same.

·         She is 36.25 inches tall-which puts her smack on the 50^th percentile

·         She is 29ish pounds-which puts her on the 40^th percentile-so, kind of a shrimp but properly proportioned

Dr. “Feelgood” had her…

·         Lay down on the floor on her back, roll over and push to standing

·         Had her lay down on her back and kick as hard as she could against Dr. F’s hands-full strength!

·         Checked her “wing-span” ration to height (to check that she is proportionate)-All good

·         Noted a Kyphosis (a word I had NEVER heard before and thought was related to scoliosis, it’s not) .  It just means she has a slight curvature at the top of her back (like a little hump) that she does to help keep her more stable and balanced  when she walks.

·         Noted a curvature of the knee when she walks (she stamps when she walks with a bent knee and resembles Frankenstein when you ask her to walk with a straight knee).

·         Crawl, tossed her about to check her reflexes, used the hammer to check knees, and Achilles response.

·         Poked and prodded her bottom and at all angles of her feet to see with a splintered tongue depressor while she was distracted with a bell (that CeCe broke…whoops!).  There HAS to be a more scientific way to test these areas other than this, right?

In summary, she basically said that she is functioning at the S1 level (her file says she’s L4-L5).  No praise from this doc…just observations.  Whatevs.

Last appointment-Day 2-Kidneys and Urodynamics

Let’s just keep this simple-Clean, Clear and no change!  Whoop whoop!  LOVE these two docs and wish we had them locally.  They even gave her a cathing doll (complete with big blue eyes and wild blond hair) for her to take home and practice on.  She loves this little doll that’s just like her and has named her Cecilia…love it!

And, we decided to make this trip more than just all business.  We went a few days early and checked out Sesame Place (Disney World for 3-7 year olds).  We hit the hotel pools, saw the Liberty Bell, without having to wait in line, road the Duck Tour around the Philly landmarks and INTO the river, and enjoyed a cheesesteak.  A great family vacation actually!

Thank you for all your prayers and keep ‘em coming…you can see just what the power of prayer can do!

And please don't forget the Walk N Roll for sb is coming up quickly...October 5, 2013!!

Please donate here!  We need your support!

Team CeCe 2013

It happened...

I got my moment. 

Everyone knows that we each get our own 15 minutes, mine lasted 3 minutes…180 seconds, 1/20 of an hour….so technically I’m still due 12.  I’m hoping to stretch the 12 minutes “due” to me to a lifetime of purpose. 

With my manager’s blessing, I was able to LITERALLY ambush the man in charge of getting a new clinic set up for sb patients here in town.  That 3 minutes is how I know I’m where I’m supposed to be.

He THOUGHT he was just being escorted to a teleconference phone room, but when I casually turned and asked the busiest man in healthcare if “he had ‘a second’ to answer a quick question” I watched his face change from polite business courtesy to annoyed teenage angst in the minutest of moments.  And my first thought was “well, there goes that”.  But. He reluctantly agreed to answer my “quick question” when he was off his conference call.

Although I had envisioned this moment for ages, I all of a sudden had all the classic signs of stage fright and hero worship…sweaty palms, heat palpitations and flatulence (just kidding, wanted to see if you were still paying attention).  So, I waited to be called into the conference room where he had exactly three minutes before his next AFTER HOURS meeting and started my less than well-rehearsed spiel.  What does it take to get through to a person of this stature?  Insurance premiums.   And without more detail to protect the innocent (and my job), this is all I can say.  The seed, my friends, has been planted.  I hope to nurture it and grow it into a well-kept, self-sustaining little clinic that provides for the needs of our very, very special population.  Maybe I’ll hear something in a few weeks, or, more likely, months and hopefully the roots will grow strong and the personnel will be attentive and caring.  All I know is that after my three minutes were up and I had watched as this man of power and stature listened to my logic, taken notes, and expressed his ideas for where to begin and whom to include on the project, I almost needed to be tethered to the ground to keep from floating away.  That feeling is indescribable and I feel inadequate as I lumber for words to match the elation.  Finally a good use of the word “tethering” in an sb story, huh?

As far as Little Miss goes…check out her gait plates…old AFOs on the left, NEW gait plates on right

The orthotist felt she was becoming too reliant on her AFOs and that she need to work a little harder to not become complacent.  To give you an idea, if you’ve ever worn ski boots, the AFOs almost give you a feeling like that where you can lean forward and let the boots take the work and weight off of you.  She has quite a learning curve with these new gadgets as all they do is disperse the weight a little more evenly inside her shoe and keep her ankles from rolling.  Remember, she used to walk like a super model stamping her way to the end of the runway…now she can bend her ankles and (almost) run!  She still has a skiers’ stance though as her quads and ankles get accustomed to their new found freedom.

What’s next?  Sooooooo glad you asked.  Guess who’s in charge of securing Corporate Sponsorships for the Walk ‘N Roll for Spina Bifida?  ME!  So let’s get rolling (pun intended) and start anteing up!  If you have a business,  this is a great way to get your name out there to this community with your tax deductible donation…it starts at just $250!  And if you have a few more bucks to pass along, we are still looking for a Presenting Sponsor for a donation of $5,000.  At any rate, donation or not, October 5^th is walk day and we’d love to have you support us by joining our walk team!

Here’s the link for you to get more details and just so happens to be Team CeCe’s personal team page too….imagine that, a little self-promotion-on this page…crazy!

 Walk N Roll for sb-Team CeCe

One last thing for now.  So many of you have been with us since we started this crazy journey on June 29, 2010.  We covet the prayers of each and every one of you.  That said, I’d love to give a special shout out to two members of our Jr. Cheering section, LUCY & GRACE!

These girls have NEVER wavered in their faith or prayer for CeCe.  Each and every night they pray for her health and well-being and that she is safe in God’s hands.  We know that without prayer warriors like these two, we would never be where we are today.  So to these two young role models, we say a GIANT thank you!  We are blessed for having you care for her as you do, every day and every night...praying without ceasing (1 Thessalonians 5:17). 

Hope to see you October 5^th!!!!!!!!

Forgive me father, for I have sinned...

It has been 4 MONTHS since my last post.  Here's the abridged version of what's gone on at Casa de Huskey since October 2012.

October/November-So, I got let from my job.  I kept showing up at of habit and they kept saying "You don't work here anymore!" But as with most things in life, God had put me in his Silver Linings Playbook at Quaterback and after 2 weeks of shock and devastation-the fog lifted to reveal a gift...time with my family during the holiday season.  I attended school parties without the reluctant acquiesce of a workaholic boss. Birthday party planning (CeCe's 2nd) and Christmas shopping became a pleasure rather than a chore to cram in between on-line sneakiness at work and bath-bedtime after hours at home.  The wrapping part still stinks--no way around that, I guess.

December-So, I honestly believe that my home is held together exclusively with caulk, paint and spackle.  I am now a fiend with a caulking gun.  I can do it standing on my head, holding a two year old's hand, and while cooking dinner--all at the same time.  In short, I got to me a Mom.  I could have my own show on HGTV.

Speaking of TV--I've never realized all the crap that's available during daytime TV hours.  Exactly how many channels bought the rights to freakin' Law & Order, anyway.  And, to that, is it necessary for me to watch murder/crime scenes as I overindulge in my morning bowl of Honeynut Cheerios?  Tone it down, people!  I shouldn't have to worry about changing the channel at 9am for fear my 2 and 4 year olds will be exposed to ANYTHING shown on Fox News, Lifetime, or (Lord, help me) BRAVO!  Our daytime hours were relegated to HGTV, Hallmark, and Food Network. Sadly, my beloved TLC didn't make the cut due to their insistence to show and promote shows about gypsy weddings & the Vegas Strip(pers).  Not to mention shows with live labor and delivery televised from dawn to dusk.  So, to TLC execs, I say ENOUGH with "A Baby Story", already!  But, I digress.

Back to December-We forged on thru it making many pajama'ed trips out to view "Chrissssmas Lights" with Caroline counting down the days with her chocolate filled advent calendar.  The BIG DAY finally arrived...and what was the best gift...A great big box of BOOGERS candy (yeah, they were THAT gross) that Santa brought Caroline.  "He sees you when you're sleeping, He knows when you're awake..." And the lesser known verse..."He knows when you are picking your nose, so stop it for goodness sake".  NOT her favorite gift.  Her stubborn pouty face still appears whenever we, her loving parents,mention it (which is often).

January-Well, January passed without incident...Ohhhhhhh, wait a minute...I got a job!  I'm back in the world of contributing citizens.  And while I enjoyed my time off with the fam, I'm happy to be back in the workplace...so far, it's a place I've been thanked everyday by somebody, seemingly appreciated and where I think I just might be able to make a difference.  More details on that later...but, folks, we are on the right track!

CeCe also started hippotherapy this month...she rides once a week at Shining Hope Farm.  She talks non-stop about Sammy & Willy, her two ponies.  It's so fun to watch her ride...it's all new efforts to work her core, hips and balance.  She'll get to go thru May and I'll be sad to see it end.

February-Like sands thru the hourglass...these are the days of our lives.  Tomorrow, February 23, marks CeCe's decompression-aversary...2 years since she had her 4th surgery and last hospital say (EVERYBODY, KNOCK ON WOOD).  What a blessing to only attend 6 month follow-up visits and leave with only another appointment in 6 months.  At her last Uro appt....her kidneys and bladder were perfect...no reflux and no UTI's since last fall!  Woot Woot!

In addition to all of that, we are already scheduled for our 30 month follow-up at CHOP.  So, back north we will go in June.  She is going to BLOW.THEM.AWAY.

So, that's it....thank you for all your continued prayers and I'll be better about keeping you posted!

PEACE!

Fearless

That's a powerful word.  Living without fear has never been my choice for living my life.  But when I watch our family, other families, kids with sb, adults with sb...that's how THEY live...without fear.  Everyday.

This past Saturday we had the honor of attending our local sb Awareness Day.  We met with vendors, families, kids with sb (and siblings without sb) as one big fat family all bound by the same thing...the very thing that tries so hard to separate us from everyone else.  It's here that we nod along as we listen to other families describe a situation we know all too well. It's here we hug strangers that we feel we've known all our lives through the magic of FB and blog posts.  It's here that we make the connections that encourage us to move forward with whatever our own individual fights might be...the little backyard scraps each day and the big fat ugly fist fights that creep up on you and slap you in the face like a bully on the playground.

And, at the risk of sounding like every trite reality show from the Bachelorette to The Amazing Race when they constantly and tearfully comment about "their journey" and "the connections" they've made along the way, this is REAL REALITY.  We ARE on a journey and we DO make connections.

Here's a short list of who we met this past Saturday:

An author
A 34 year old sb advocate and self admitted FB addict
A sister in law of an adult traumatic spinal cord patient who sees carry over in our causes
A mother, motivated by her son to dream up this event when he was 1 year old
A mother and father who've taken their son to China & Mexico for stem cell treatments
A Senator
A child celebrating his 3rd birthday with 150 people surrounding him
A local restaurant owner (and donor of lunch!) who timidly/tearfully asked me how sb "works"
A pregnant wife and her husband due to deliver in November with an L5-S1 diagnosis looking for help


This, my friends, is a fearless group.  All I took away from this day was POWER.  The power to do more, the strength to do more.  This is the place where we go to GET educated and then we bring all this knowledge back and share it with everyone else.

Happy sb Awareness Month!  Your Education will NEVER be complete!


Here's a video from last week with her showing off what her big sister taught her how to do...

Here's an update on Little Miss Fancy Pants:

She just got her third set of braces (AFOs) and can walk walk walk all over this Land!
She is no longer using a walker (per PT).
She has started Aqua Therapy to strengthen her thigh muscles.
She's wearing Ponsetti Bar at night (it TOTALLY looks like a snowboard) to keep her hips in neutral.
She's talking up a storm and using 4 word sentences.

Ok...enough bragging...here are a few current pictures...

Ok...so that's not really her...but it's still fab pic worth a share...!

Satisfied...for now.

Busy week.  On Monday I had my meeting with the hospital staff.  My feelings about the incompetence of the Operations Manager (OM) I had been dealing with for the first two months of this self-proclaimed  pilgrimage were, in a word, CONFIRMED.  I felt as if there were only two ways this could go...very poorly or very productively.  I was prepared (I even brought them handouts from other clinics defining sb for them....heehee...sometimes these folks need a kick in the pants, right?).  Anywho...I got the chance to meet the new doctor in charge of the clinic... Dr. H. and I'm happy to say out loud...I think I'm in love!  Ok, maybe that's a bit drastic, but from the moment SHE walked in the room and started talking (she kinda railroaded the other two and I, of course, responded to that...about time somebody did), I knew we were on the same page.  She is a traditional MD with a neurology background and has spent most of her career with kids with MD (Muscular Dystrophy).  That said, I believe that her clinic experience is going to be invaluable to the underlings as they try to pull this mess of a clinic into shape.  She started barking out orders (in a nice way) to the VP & OM that the sb clinic needed a coordinator to run it, and only it...someone she could hand pick to mold to her vision of the clinic.  Uh, can I get a "What, What!?!?"  FI-NAL-LY!

OM couldn't get a dumb word in edgewise...what a delightful change.  To date, all that has dribbled from her mouth is corporate speak, double talk.  What I was hearing now, was actual plans to pull this off.  They are going to be looking to me to help get the work out to local parents and try to get their support and confidence back into the program.  It was interesting, at one point the VP said "Well, we just aren't sure there are enough in the patient population to need this clinic.".  Had I been drinking a coke at that time...it would have come out my nose as a guffawed and spewed it out at the ridiculousness of this comment.  I know 50 people who have sb for crying out loud.  How could a hospital with this size of service area not draw in more folks....Oh yeah, your clinic sucks, that's why.  BTW, I spoke to a Dr. at Duke Medical and they serve 500 patients with sb and neighboring UNC serves 400.  I guess the other 50 from  just couldn't get off the wait list...what a bunch of hooey. 

So, that was Monday.  Tuesday I had my first NC/SC conference call with the other board members and I think this is going to be really good.  I'm hoping to be in charge of the medical community sub committee...but we shall see.

On Wednesday, I watched the finale of So You Think You Can Dance...but don't tell me who wins, I DVR'd it and have yet to watch the last 30 minutes.

On to Thursday...I trekked back down to the hospital (during a Panthers game....yikes! The score and the traffic were equally terrible) to go to the info session for the hospital Family Advisory Board.  I got a good overview about what they do, but it's not for me so I'm not going to apply for that...this year.

So that's about all the update.  To end on a fun note...we went to a neighbors birthday party over the weekend and two very special guests showed up...and they saved me about $3K and 7 vacation day...Can you tell who liked them and who liked them...from a safe distance?  Till next time...

She can get 70 mpg on this hog!

ARE YOU READY...???  Thanks to her anonymous donor and Ambucs AmTryke...she is going to be racing some seriously HOT WHEELS....Look out Dale Earnhardt, Jr.!

Upward mobility

So it's been too long, my friends.  I need to be better about keeping this up to date.  We've had a great summer and are finally cooling down a little here in the Carolinas....enough about the weather already!

I'll start with some SUPER cool news.  Back in July (after attending the annual conference) we put CeCe's name on a list (a loooooong list) for her to get a special tryke made to her exact needs and specifications AND....drum roll please.....SHE WAS PICKED on Friday!  We thought her PT had something to do with it, but just found out this morning that a family in High Point, NC does fund-raising and donates money to local NC kids to get these bikes....I can't tell you how that touches my heart and what a big deal this is to us....the new bike will be here THURSDAY!!!!!!!  Here's what her sweet ride will look like with a personalized license plate and everything...Watch your toes, people!

Now that we are on stable ground (as much as you every can be with sb) it's time for us to pay it forward.  So here's the latest... After several unfortunate experiences dealing with our local children's hospital and dreading the option to drive her three hours away when we have such wonderful facilities locally to Duke University to the next best clinic, we have decided to take matters into our own hands.  We recently contacted our local clinic to find out why we hadn't heard from them and where CeCe stood for a return visit...since we hadn't heard from them IN OVER A YEAR and phone message have never been returned...not one time....ever. So after trying to go thru the proper channels, I Googled "President of (Local Children's Hospital)" and got a phone number to "please let us know how to serve you better".  That was all I needed.  So, next Monday, dressed in my Sunday best, I will be meeting with the VP of the hospital, Dr. in charge of the clinic, nurse in charge of the clinic, and operations manager of the Specialty Center...WOOT WOOT.  We will be discussing, coordination of care issues, follow-up, attending clinicians & (sadly) promotion of the clinics existence as if broke my heart to find out families in our area never even knew it existed.  This type of clinic has been modeled well in other cities and there's no reason we can't make it happen here.  I'm saying all of this in hopes that someone reads this and knows we are trying to make this better.  In addition to that, I am submitting my name for nomination to the Family Centered Care Board of Directors so that families that get this diagnosis in the future have a place to turn to...someone that can lead them in the right direction.

Also, pamphlets are currently being printed by the SBA to be distributed to local MFM (Maternal Fetal Medicine) doctors and OB/GYN to help them learn how to Deliver the Diagnosis and a take home one on Receiving the Diagnosis to give parents a chance to find out more information and let them know what resources are available to them.  Just like CeCe learning to walk...once tiny step at a time.

{{Stepping down off soap box}}

On a more personal note, we were able to go to our family reunion this past Labor Day and my cousins, aunts, & uncles were able to meet both my girls.  It was fun to watch their kids interact with mine.  A cousin's son close to CeCe's age and her turned into NASCAR stars as they raced (with her walker and his push toy) around and around and around and around arou....well, you get the picture.  It was also super duper awesome to meet up with the Cleveland Crew...thanks for making the trip down just for a slice of pizza.  We miss you guys!

All in all, a pretty good summer....dont' forget the next Walk N Roll is right around the corner (May)....so get your laces strung up tight!

Here's Little Miss Fancy Pants at the splash-ground a few weeks ago....Happy Fall!

Can I get an "AMEN"?!

Holy COW!  Did we ever get a surprise during CeCe's PT session tonight...check it out with your own eyes....rock it, CCB!

Told you so...we KNEW it wouldn't be long!!!!!

It's what's on the inside that counts.

I’ve heard this phrase all my life…Almost always when it has to do with pre-judging someone or not giving someone a fair shot.  Sometimes it’s what people say when they just didn’t know what to say…kinda like, “It’s all for the best.”  Well, my friends, turns out it IS on the inside that counts even when it comes in the form of a syrinx. 

As you may recall, CeCe has a pool of fluid in her back that can be a bit ornery.  It was the hope that this pool would shrink and just lay there, still, not causing her any difficulties.  But as of her last MRI in November it was the same as it had been 6 months prior.  So here we were at her follow-up to her follow-up to her follow-up.  We waited on pins and needles in hopes of hearing the Neuro say those three little words…”Her syrinx IS smaller.”  Ok, that’s 4 words…whatev, math is not my strong suit.  Who cares!  Results=No pending surgeries!

Although we have to catheterize her now to prevent infections and protect her kidneys, she has come so far in just a short few months.  She has about a dozen words now (My favorite is “Mom-MEEEE” EVEN when she says it a hundred times over and over in time with her crawling cadence.)  She loves her some Elmo (“MoMo”) and she already IDOLIZES her big sister, Caroline…attempting to copy everything she does (Man, are we in trouble!).  She is ALMOST walking…ANY.DAY.NOW.

In other news…Team CeCe ROCKED the Walk N Roll.  We had such a blast and want to thank all the folks that supported our cause.  CeCe won first place for donations and left with a gift card that produced her first set of wheels…a Red Radio Flyer wagon.  I saw her eyeing the one a kid had at the walk, and thought she deserved a little something special.

Later, Gators.

Our girl made the paper!!!!!

I knew it would happen one day or another...but TODAY is the DAY!  CeCe is front page news in our local paper....check her out!  Thank you, John Deem!

http://www.lakenormancitizen.com/news/item/2162-a-little-girl-with-a-lot-of-backbone-fights-to-walk.html

To donate to the Walk N Roll...please click...
http://www.walknrollncsc.org/faf/search/searchTeamPart.asp?ievent=1014740&lis=1&kntae1014740=83AEE55ED8F240DCB7C3F2DF014E78A8&team=4975325

Last chance, peeps...to donate to an amazing cause...The Walk N Roll is THIS Saturday... here's the site
 http://www.walknrollncsc.org/faf/home/default.asp?ievent=1014740&lis=1&kntae1014740=5640ADC650A5498496B8992DCE30AB88

And here's a little inspiration...Thank you for helping future babies by supporting CeCe NOW!

And away she goes!

CeCe got her first walker yesterday and took to it like a fish to water. What a blessing it is to watch her tear up the living room, NASCAR -style.

She got it so quickly...she didn't want any help from her PT...as shown here...

 THAT'S MY GIRL!!!!

Ok. Ok....maybe she didn't love it the WHOLE time... :)

All walks of life

What a surreal experience it has been to move to a new neighborhood. Packing up all your memories (and junk) into little boxes and transporting all to something you hope is a bigger better change for your family. We are in a new place where no one knows our history and I find myself wondering how/when/if to tell them about CeCe or let them just meet her and SEE for themselves rather than putting her limitations and expectations out there for them ahead of time. Last night we met a new neighbor with a child just slightly younger than CeCe and I didn't mention a thing and none of it seemed to matter. I liked that....I like it here.

CeCe had an OT (Occupational Therapy) evaluation last week to check about her thumb tucking when she crawls and it has been deemed "just a habit, not a problem"...yea! She also had PT yesterday and in addition...she has the hand-eye coordination of an 18 month old, yea, again! She has also grown out of her first set of "Magic Shoes", she is going to be getting a reverse walker. It looks like this..

As soon as the PT said it, I immediately grabbed CeCe a little tighter. It's hard still for me to know she needs "Assisted Devices"...that lasted about 2 seconds and then I thought. "Awesome! She'll be able to cruise around with this!" Knowing it will all take a little getting used too..but what doesn't?

She also got a great report from her teacher yesterday...She is playing outside with the other kids (a goal of ours as the weather gets warmer)and can get up the slide, down the slide and go through the tunnel...ALL BY HERSELF...I just may stalk the bushes in the next few days to see it myself. Here's a video of her going up and down our stairs in the new house...something she did DAY 2 here and NEVER did in the old joint...

Anyway...enough bragging.  Team CeCe is well underway and gearing up for the first NC/SC sb walk on May 5th.  Be a pal and donate to the cause or better yet, JOIN US!  http://www.walknrollncsc.org/faf/search/searchTeamPart.asp?ievent=1014740&lis=1&kntae1014740=7AC5CB812B2F4D53BAF73004437C827D&team=4975325

Also, keep us in your prayers going into May...CeCe has another big MRI coming up to check her syrinx and fluid around her brain...all seems to be really well, but we loathe the sedated MRIs (probably not too much fun for her either, come to it.)

Here's some current pics of our Super Girl!

Team CeCe is ready for action!

It's been awhillllleeeeee since our last update, but here we are in 2012 and ready for whatever life brings us!

CeCe is doing well and just recently had her annual evaluation from the county to determine what services she needs and we are pleased to say...no new services are needed at this time! She is progressing in all areas....pulling up (with and without her braces), vocalizations, crawling on all fours like a mad woman and eating everything is sight! She is a true charmer and personality is really srtating to develop...you should see her put Caroline in her place...HILARIOUS!

We've had a great year so far and are so excited to introduce to you Team CeCe! North Carolina and South Carolina have just mobilized the first ever Walk 'N Roll event on Saturday, May 5th...and we need you to support Team CeCe. Here is our special website set up to give you all the details. We'd love to have you join us in person (or spirit!) on this special day to promote awareness and raise money to support sb research.

http://www.walknrollncsc.org/faf/donorReg/donorPledge.asp?ievent=1014740&lis=0&kntae1014740=9AAA319138BB4950BB6F4060172C28DB

Hope to see you there! Go CCB!!!!

“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!)