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!