Saturday, June 16, 2012

Time to Catch Up!

Wow - It's been too long since I've written. I'm now home from an inspiring adventure, but let's see if I can recap from Thursday morning when I met the craniofacial team at the St. Louis Cleft-Craniofacial Center at Cardinal Glennon Children's Medical Center.  

Thursday Morning: 

 

 I pull into Cardinal Glennon with barely a minute to spare and was pleasantly surprised by the small size and the free parking; very low key and suburban feeling right in the middle of St. Louis. I parked my bike and filled my helmet with FACES brochures, blog cards, and business cards and headed up to meet the team who had generously set aside time out of their busy morning to meet with me. [Inspirational eye and photo by Ashley Wiehle]

Clinical Nurse Coordinator Debbie Watters, met me in the waiting room and ushered me in to meet the team as they started arriving. I was quickly introduced to Plastic Surgeon and Team Director Dr. Lin, who was young, charming and easy going, and I can see him having a wonderful way with his young patients. I also met speech therapist Loretta Laurent, occupational therapist Sue Stuppy, dentist Jim Klarsch, audiologist Sarah Duncan, and public relations Ashley Wiehle who had her camera ready! [Thanks Ashley for taking photos with my camera for me!] The whole team is friendly and good natured and I was put immediately at ease.

I learned that the entire team [approximately 20 professionals] was not always there together, and often rotated or were on call for when needed. The team meets three times a month at Cardinal Glennon, so their waiting room is always full and they work hard to give each patient the time and care they need.  
I learned a lot talking with this great group of people. For instance, Dr. Lin brought up speech therapy and how important it is in a child's world where they're not only judged by their looks, but by their speech as well. Just as people with facial differences are assumed to be less than intelligent when they are certainly not, nasal and unclear speech can also lead to thinking that they are mentally challenged, and they are not!  

Thank you Cleft-Craniofacial Team for taking the time to meet with me! I learned a lot and it's nice to know the professionals that FACES' clients see are so warm and caring! 


 

Thursday, June 7, 2012

This is what it's all about!


I hit the road yesterday morning about 6 am and made good time ! I took Interstate until Missouri where I took exit 16 and turned left towards Anna, then right [North] on Hwy 51 for some back road travel. That was a nice diversion including the HUGE piece of farm equipment I rode behind for a few miles! 51 took me to I-64 and I was soon in St. Louis and found my hotel. Ah...sweet stillness while my body continued to vibrate from the ride.

Yesterdays travels took me over 450 miles. Today will be a longer track. I'm not taking the Interstate but state highways with views. That probably ads about 100 miles to my route - but I really hate riding on the Interstate if I have a pretty road to travel instead. We shall see!

This morning I have the honor and pleasure of meeting the team of professionals at Cardinal Glennon Cleft-Craniofacial Center who work with patients with craniofacial anomalies.  You may wonder why a team? Why not just one doctor?

A Typical Team has the following professionals:
  • Plastic Surgery
  • Speech Therapy
  • Ears Nose and Throat
  • Audiology
  • Occupational Therapy
  • Feeding professionals
  • Dental / Orthodontists Services
  • Genetics
  • Psychology

If you think about the head - you realize there's a lot going on above the neck. You have speech, hearing, breathing, vision, throat, facial structure, etc...And so when a person has a craniofacial disorder, they often need a combination of doctors that specialize in each of these areas and work together for the best possible outcome for the patient. The professionals that treat them have experience with craniofacial disorders and so they have a much higher success rate than a professional that has not worked with craniofacial disorders. They've seen it before and know what works and what doesn't; hence, their success rate reflects this.

And a Team is everything it implies. The Craniofacial Team works together and knows what is going on in all aspects of their patient. We all know Team Work is important!

So today, I get to meet some of these crazy busy professionals! They only meet once a week about four times a month, so their clinics are extremely full with kids and their parents patiently waiting their turns. I will basically be there to shake their hands, give them a FACES brochure and briefly explain how FACES helps with medical travel, education and resources, get a photo taken, and then I'll be out of their and heading towards Upland and the FACES Rally!

It's a great day!


Tuesday, June 5, 2012

Cardinal Glennon Craniofacial Center in St. Louis

Meet and Greet Arranged With Craniofacial Team at the Cardinal Glennon Cleft-Craniofacial Center in St. Louis


I'm excited to announce I will be meeting the very busy and very skilled team of craniofacial professionals at Cardinal Glennon Craniofacial Center in St. Louis on Thursday morning! Thank you Dr. Lin and Debbie Watters for working with me to arrange this!

http://www.cardinalglennon.com/medicalspecialties/cleftlip/pages/default.aspx

Rainy Morning and List Making

Wonderful rain plays in the background as I sit on my porch with a note pad and pen, making my To Do, To Bring, To Remember Lists. Yay! That means I'm getting to business - did I say I can be a procrastinator? Or I like the, "I work well under pressure!" line better! More forward thinking.


 I tried to put my seat on yesterday evening, but got stuck on the last thing to do - remove two brackets off the stock seat to reuse on the new seat. Well those suckers will not come off for me! I've tried tapping and brute strength but my tools are poo-poo [standard bike issued] and the bolts seem cheap too. I have to take her in to the shop anyway - I'll ask them to help with it. Darn it! I was hoping to do it all myself, but I guess sometimes you have got to ask for a little help. Thank goodness I am surrounded by so many wonderful, and helpful people.


The rain is due to let up before I leave for Garry Griffith Cycle in Chattanooga for an oil change, rear tire, general overall good look see at things and help removing the two bolts and getting the Mustang seat on. I may see if I can get some foot rests/pegs too. The neon pink duct tape isn't working too well.


FACES Rally - This weekend! I'm excited to attend this rally! I've been working with some of the great people there via email, phone, Facebook and I'm looking forward to meeting them in person. The group of folks that put together this rally - work their booties off!!! If you're up for a road trip come check it out! facesrally.org
They have free camping in the park and they about shut the town down for a big party to help kids and adults with craniofacial differences. It's going to be a lot of fun! I'm sure I'll be coming home with some cool ideas to use in the 2013 FACES Ride 4 Smiles!

To Do - To Do!
Later ~
www.faces-cranio.org

Monday, June 4, 2012

Keep Your Fingers Crossed!

Today - two days before I leave - I finally find the right people to call at the Cardinal Glennon Craniofacial Center in St. Louis to get a response! Keep your fingers crossed...I will know tomorrow if the surgeons will take the time to meet with me for 5 minutes for a quick photo and a brochure in their hand on Thursday morning....

I think they're going to say yes...We shall see!

Two Days Til Take-Off!

Count Down! - 2 Days and Weather is Looking Good!

 

FACES Ride 4 Smiles was a Huge Success! The Gratitude I feel for everyone that participated is hard to put into words! All I can say is WOW! What awesome folks supported FACES Ride 4 Smiles 2012!

Speaking of awesome people, I am about to embark on a journey to meet more big-hearted bikers in Upland, Nebraska for the FACES Rally - June 8, 9, & 10! I'm looking forward to meeting some fine folks who have worked hard for 10+ years to put together this weekend event that benefits FACES: The National Craniofacial Association.

My seat came in! A Big Thank You to David Harless for bringing my seat to me from Rick Cycle Parts in Rainsville, AL. The seat arrived with David at the FACES Ride 4 Smiles and boy was I tempted to try and put it on then...but I had a ride to work so I had to put it into wonderful FACES Volunteer Dan's van [Thanks Dan!!!]. I'm picking it up today. Can't wait to put it on and sit on it!!! Photos to come! Thank you Dale, David, and Rick!

Off to work. Happy Monday!





Friday, June 1, 2012

And then there's the DUCK

Tomorrow is the FACES Ride 4 Smiles and I have been pretty much crazy busy getting ready for this  event. The weather forecast is looking good and the rider registrations are pouring in! I'm hoping this will be our biggest year yet! Check it out -ride4smiles.org

When I'm not thinking of Ride 4 Smiles, I'm thinking about next Wednesday at 4:30 am. The early morning that I will be getting on my bike to ride towards Nebraska. I'm getting excited. This will be my longest bike trip yet!

"To Do" List for my trip to Nebraska. 

  • Mustang Seat - Check   [You know how I feel about that hard Honda stock seat!!!] - YAY - Thanks to a dear friend from the 80s days I was able to swing it. Thanks to Rick's Cycle Parts, I was really able to swing it.Thank you both sooo much!
  • Rain Suit - Check - Found a great deal on one at the Sweetwater Flea Market when I went riding with Janet and Billy Saturday.
  • Oil Change - Monday
  • Tires ? - Eeek - hoping to make it on this set but my back one is looking kinda sketchy...


And then there's the DUCK
It all started with a ride on Saturday with Janet and Billy...

...and Billy found this duck as he was waiting on Janet and me to arrive. Well I instantly fell in love with the little critter and decided that it was going to be my riding partner for my Miles for Smiles. I think it's a he and I'm not sure of his name yet - but I have found my ascot for the ride!

Time to get rolling to work and making Ride 4 Smiles one of the best years yet! Have a great day and keep the shiny side up!