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!!!!