Tuesday, August 27, 2013

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).

Tuesday, July 2, 2013

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 50th percentile
·         She is 29ish pounds-which puts her on the 40th 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!

Wednesday, March 27, 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 5th 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!
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 5th!!!!!!!!

Friday, February 22, 2013

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!

Monday, October 22, 2012

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...

video


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...!




Friday, September 21, 2012

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...