Join “Team Rudy” Today!

You may recall that in celebration of Rudy’s birthday last October, our family and some friends participated in the American Heart Association’s Santa Barbara Heart Walk to raise funds for pediatric research and programs.  At the time of the walk, we were anticipating and very excited about a trip to UCLA for Rudy’s next heart cath and, we hoped, the green light to move forward with Rudy’s next heart surgery.  As most of you know, the news from Rudy’s heart cath on October 21st was not what we had hoped.  Not only was Rudy not ready for his heart surgery but he was officially declared not a candidate for surgery or a heart transplant at all because of high pulmonary pressures and poor lung function in general.  Shocked and in disbelief we sat with two of Rudy’s cardiologists after the cath to try to understand what options Rudy had.  In short, they described that Rudy had exhausted his current medical options but that we shouldn’t lose hope because “there may likely be treatment options available to Rudy in 6 months that aren’t available today”.

At the time, this felt very daunting and the wind was certainly taken out of our sails but in the 10 months since, we have been encouraged by Rudy’s growth, developmental progress and obvious love for life.  As a result, we are hopeful that God is, indeed, allowing Rudy time – valuable time that could very well provide new treatment options for him.    We are motivated more than ever to help in the effort to raise research funds.  Last year, our team (Dr. Harake’s Moms with Heart) raised over $10,000 for pediatric research through the Heart Walk campaign ~ an amazing success!  We certainly surpassed all our fundraising expectations going into it and, more importantly, it was a meaningful experience for our family and such a special birthday celebration for Rudy.

For all of these reasons, our family is excited to participate, once again, in this very personal campaign to celebrate Rudy turning 3 years old in just two months!!  By participating in this year’s Heart Walk on Saturday, October 8th, we hope to recruit a team and raise another $10,000 in research funds vital to a potentially healthy and active future for Rudy and kids like him.  Will you consider joining us by donating today or joining “Team Rudy” in Rudy’s honor?

To visit our family’s personal donation page, follow these simple steps:

  1.  Go to “www.sbheartwalk.com
  2. Click “Donate” on the Home Page
  3. Enter my name:  First Name “Trish”, Last name “Geyling” and click “Search”
  4. Follow the instruction to click on our family’s name and you’re there!!

Here’s some more specific information:

The 20th Annual Santa Barbara Heart Walk

Saturday, October 8, 2011

Fess Parker’s Doubletree Resort:  Registration at 9:00am – 5k Walk at 10:00am

Let’s Party!!!

For those of you who are close enough to walk the walk in person, we will gather the morning of the event, distribute “Rudy blue” Happy Birthday balloons to all the “party walkers” and celebrate with cake and party favors at the finish line!!  What a great way to spend a gorgeous October morning in Santa Barbara!  We hope you can join the fun.  Let us know you’re coming and we’ll reserve a balloon for you! 🙂 (rsvp to trish@silverbytrish.com)

Come join the fun!!!

2010 Fundraising results!!! 

Look close…Rudy’s family and friends were #1 and Logan’s family and friends were #2 ~ We were neighbors in the CTICU at UCLA and forever partners in our SB Heart Walk efforts!  Santa Barbara Heart Families ROCK!

Join our WINNING Team!!!

2010 SB Heart Walk
Donate online today and get your very own "Rudy Bookmark" as a personal thank you from our family!
Join "Team Rudy", raise $100.00 and get your very own "Team Rudy" t-shirt - a gift to you from our family!

Friends, please know we are very mindful not to bombard you with financial requests as we know these are challenging times for us all.  Great things can be accomplished when many join together but know that if you are unable to join us in this particular effort, we are deeply grateful for your ongoing partnership in prayer for Rudy which makes you a member of “Team Rudy” always!  🙂

The big kids have caught a vision and decided to have a garage sale sometime later this month with the proceeds of the sale going to the American Heart Association.  If you’re local and you have stuff you’d like to donate, feel free to drop it off in the next couple of weeks and we’ll add it to our stash of goodies to sell.
We’re all anticipating another great event and having fun in the process.  Bless you dear friends…
Thank you!

Warm California Sun

After several weeks of June Gloom at the start of our summer, we’ve finally had some nice sunny weather here on the coast and we’ve taken full advantage of time in the pool.  Even Rudy has discovered a love for the water.  Although we have to be very careful that his trach doesn’t get wet, time in the water is so good for him.  He even spent one of his therapy sessions in the pool with therapist Kristin and is more and more confident with each spin in his inflatables!  🙂 

Max produced a little video with some recent pool footage we collected…be patient, it takes a while to buffer but it’s worth the time investment!  Ha (Thanks Max):

Boy, when he finally gets to wean from the trach, he’ll be quite a little water-rat like his big sibs!  He’s definitely primed and ready to go…’wish you could come over and join us for a dip ~ especially our friends and family burning up in the Midwest and East!  🙂 Bless you friends….

Water-rats with goggles!

Almost….Just About There….

It's a big, big world out there and Rudy is ready to go places!

Well, we’re happy to report that Rudy is almost officially accepted into the California Children’s Services (CCS) program!  CCS is a state program that offers a wide range of health services for children up to age 21 with certain health problems.  Rudy’s current therapy is provided through the Regional Center’s Early Start Program and will end when he turns three years old.  Normally this isn’t a concern as most kids with delays like Rudy’s are under the CCS umbrella as well so there is, from what we understand, a natural transition from Early Start to CCS services.  Although everyone working with Rudy considered it a given that he would qualify for CCS, Rudy’s road to CCS has been a twisted one. 

We were given the standard instructions by Rudy’s pediatrician and our Regional Center case worker as to how to go about initiating the CCS application process shortly after we brought Rudy home from the hospital.  As was expected, Rudy did not qualify initially due to Rolf’s income but we were told over and over again to push through the system as Rudy indeed would qualify for the Medical Therapy Program regardless of our household income.  Many applications, Dr. letters and current OT recommendations over the past year and a half led to a firm and final denial this winter with the stated reason being that Rudy’s condition did not include a neurological diagnosis that would put him in one of their qualifying categories.  As you can imagine, this was extremely troubling news to hear.  We feared that although Rudy had the developmental delay of a child with cerebral palsy, for example, his case would be lost in a big, nondescript crack just because he didn’t have the right neurological “label”!  The whole process was indescribably frustrating and a bit scary not knowing what other resources were out there for Rudy once he turned three.

As it turns out, Rudy’s onset of seizures in May just may be working in his favor.  Rudy’s pediatric neurologist had no problem sending in his recommendation to CCS after our first consultation based on Rudy’s stroke history, MRI results and seizure activity and, lo and behold,  our communication with the CCS office resumed shortly afterwards!  A packet of paperwork for us to fill out arrived as did the coveted BIC (Benefits Identification Card).  Now, we’re not getting our hopes up completely as he still isn’t officially accepted but CCS therapist Rachel came to the house this week for an assessment and when I asked her if she  would recommend treatment for Rudy based on her initial assessment, she said professionally but with vigor “YES!”.  Phew!  

In addition to the potential transition from Early Start to CCS, Rudy may also be transitioning to PRESCHOOL in the fall.  He will qualify for special ed preschool starting October 1st when he turns 3!!  Unfortunately, the Goleta School District special ed preschool program isn’t currently certified for non-ambulatory kids but there is a wonderful program in the Santa Barbara District that Rudy could go to if he is cleared by his doctors to go.  The thought of Rudy going to school is both remarkable and terrifying!!!  We just never allowed ourselves to look too far into Rudy’s future so now that preschool is potentially right around the corner, I am left feeling so very grateful and so very nervous all at once.  🙂  There is alot about this fall that is unknown and many details for Rudy that still need to fall into place but with Wilson and Max heading into new schools and the potential of our family managing 4 different schools (!!!! YIKES), I’m praying already for smooth transitions for all and peace for this mama’s heart that is anxious about sending her chicks in so many different directions. 

In the meantime, it’s “business as usual” around here…check out Rudy’s new trick…

Yea!!!!

 

Rudy and his BIC!!!

 

Rudy is making super progress this summer and absolutely loving all the extra activity the big kids bring to his day…stay tuned for some fun pool footage.   The summer is blazing by much too quickly…Bless you friends!

Uppie Fever!

Wow!  My Cinderella-esque weekend is over and now I’m challenged to put into words what the whole experience means to me.  I’m not sure where to begin…  

  

circa 1987
Memory Lane...
Oh, this one is a favorite!

I guess I should start by telling you that, yes, I am an Up With People alum! (Check out UWP in action…click here)  A little known fact about me for many of you…I guess I don’t talk about it much…and it’s not because I lack an appreciation for the experience.  On the contrary, I’m a very proud cast member of UWP Cast C 1986-87!!!! (proof in pics above) It’s just the opportunity to talk about one’s tour with Up With People back in the mid-80s rarely comes up in conversation!  ha  And maybe I’m a little gun-shy given the last time the subject came up in conversation with my friend Bob (yes, “Pastor Bob” who sometimes comments on Rudy’s Beat)…back when Bob, Rolf and I worked together in L.A. an old friend of mine met with Bob about a potential work opportunity.  When I arrived at Bob’s office to pick up my friend, Bob said with great enthusiasm “Trish! Kim told me you were with Up With People.  You were with Up With People? I didn’t know you traveled with Up With People?!!!”.  I humbly shrugged my shoulders and began bobbing my head back and forth preparing myself for the onslaught of gushing admiration I usually encountered when people associated me with this amazing organization when Bob continued….”I HATED Up With People!!!  No one can be that happy!”.  I responded with a shriek of disbelief and a big, ol’ slug in his arm.  Way to go, PASTOR Bob!  You traumatized this happy UWP heart for over a decade!  🙂  

Well, the positive, giving spirit for which Up With People is known was certainly on display this weekend in Tucson and as the back story of how this trip came to be for me and Rolf continues to unfold,  it’s clear it was in play in the months leading up to the reunion as well!  My cast has had a reunion every five years since we traveled..this year’s reunion hosted by the UWP Alumni Association included the casts from ’71,’76,’81,’86,’91,’96 and 2006…and although I’ve always wanted to attend, I never felt we were in a position for me to make that trip back to Tucson.  When talk of our 25th reunion started to circulate on FB a year ago, once again, I regretted having to miss the event…feeling it was even more out of my reach with the “Rudy logistics” in play.  

Unbeknownst to me, a fellow cast member spearheaded a committee of cast mates  (thank you Jim and all!) and submitted my name for an Everyday Hero award nomination having followed our journey with Rudy from afar the past couple of years.  (Jim also nominated our cast rep, John, for the “Outstanding Cast Representative” award and John also won!!!  MUCH deserved John…congrats!).  When I communicated my regrets about not coming, Jim quickly contacted Rolf and told him he had to get me to Tucson…and so the web of lies and deception started spinning and Rolf was a very busy boy coordinating Rudy’s nurse coverage, care and activities for the big kids and undoing any plans I had for the weekend without me finding out about anything!  His efforts to keep it a secret were quite elaborate…he and his posse of deceivers went as far as to send me texts and emails to confirm plans that he already secretly canceled, Rudy’s nursing agency sent me a decoy nursing schedule at the beginning of the month as Rolf had rearranged our hours for extra coverage for the surprise weekend, etc, etc, etc.  It seems everyone around me knew what was going on and NO ONE slipped and let the cat out of the bag…amazing!  

All the hard work of  Jim, Rolf and Cast C at large paid off because I was completely clueless when it finally came down to prepare to leave on Friday.  I was instructed by a mysterious and somewhat vague letter to pack and wait for further instructions.  Claiming he didn’t know what was going on, Rolf headed off for work Friday morning and told me to have fun with whatever was going on.  With the help of some very sneaky friends, I arrived at the SB airport to find Rolf with his overnight bag waiting to whisk me away to Arizona!  Wow!!  

sneaky ones...

Needless to say, my mind was swirling with questions…who? what? where? why? HOW?  And when it finally sunk in that we were heading to Tucson, my heart was all a flutter with apprehension…”It’s been 25 years!  What if my cast mates don’t remember me?  What will we have to talk about?”  Little did I know what was ahead.  

Headed to Tucson!
Disbelief in Tucson!

Well, my fears were quickly relieved when Rolf and I got off the plane and were greeted by one of my cast staff members, Denis, and I recognized him immediately.  Denis drove us to the resort where we were greeted by 15+ cast friends in the lobby!  There were lots of hugs and I could barely catch my breath…instant reconnections!!  What a rush…  The reconnections continued all afternoon poolside (passing much too quickly) until it was time to get ready for that evening’s banquet and program.  

Goofy Uppies

Of course, my cast knew about the award and Rolf even admitted to being pretty nervous before the program started but either I was so caught up in the frenzy of just being there or my castmates are all pretty cool cats because I had NO IDEA something was up.  I was completely blindsided when my name was called and I was invited to the stage.  With tears streaming down my face, I looked out at the hall of 700+ guests barely able to concentrate on what was being said.  The presenter read a shortened version of the nomination letter below…posted for our records:  

“It is strange to nominate someone for an award that celebrates them for being the person they are, but no better words describe Patricia (Trish) Wilson Geyling (86C) than “Everyday Hero!” A dedicated wife and mother, Trish’s life was forced upside down by a turn of events in 2008 which changed her world and have helped her to become an amazing inspiration.  

Trish and her husband Rolf were surprised to discover in the spring of 2008 that they were pregnant with a fourth child, a boy. But the real shock came when the 27th-week ultrasound showed that their baby was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). In plain English, HLHS means that the left side of the heart is underdeveloped and non-functioning. It would take a series of three risky surgeries between birth and about 4 years of age to get the little half-heart configured to give their son a chance of survival.  

 Rudy was born at UCLA Mattel Children’s Hospital on October 1, 2008 and had his first surgery, the Norwood, when he was five days old. While optimal timelines project about a month of hospitalized recovery, Rudy battled numerous setbacks that kept him in the ICU. His battles with chylothorax (lymphatic fluid in the chest cavity), trying to breathe on his own, and process food properly saw him return to the operating room four additional times (thoracic duct ligation, pleurodesis, tracheostomy placement, Nissen fundoplication/G-tube placement). They were finally able to bring Rudy home on May 7, 2009. The doctors would have counted it a victory to have him home for six weeks; there is great amazement that he has been home for more than two years.  

 Trish’s courage and strength over the last years are enough to make her a hero, but she and her family have taken their pain and struggle and transformed them in ways to help so many others. In the years since Rudy’s birth, their blog Rudy’s Beat (https://rudysbeat.wordpress.com) has been a source of connection for friends and family, as well as a resource for other families dealing with children born with challenges. Together with members of their community, the entire family has participated in the American Heart Association’s Heart Walk, as “Team Rudy,” to raise money for heart research. Trish, an accomplished jewelry maker, designed and produces a special heart pendant (http://www.silverbytrish.com/html/pendrh.html) with proceeds supporting Camp del Corazon, a wonderful organization that provides rich camp experiences for children living with heart disease. Trish has also spearheaded the production of “Rudy Rolls” forNICU/PICU wards, offering colorful and practical tools for propping up ventilator tubes and IV lines, for physical therapy exercises, positioning trach babies for trach changes, or simply grabbing hold and snuggling.  

 Rolf continues his work as President of the Santa Barbara Rescue Mission (http://sbrm.org) dedicated to bringing physical, emotional, educational and spiritual resources to men, women and children in need, particularly those struggling with addictions. The entire Geyling family is involved in activities supporting this program as well as their spiritual home, Coast Community Church. As time allows, Trish, a talented singer and guitarist, still performs for fundraisers.  

 A true testament to Trish’s heroism has been the dynamic affect Trish and Rolf have had on their three older children Wilson, Max, and Olivia. Each has grown into a compassionate caregiver. At a recent school assembly that Trish and Rudy were attending (since sister Olivia was getting an award), Student Council President Max noticed that the normal applause and celebratory cheers were affecting hyper-sensitive Rudy. He can get himself so worked up that he goes into respiratory distress. Sure enough…as the first awards were handed out and the applause began, Rudy’s face turned red, the tears started to flow and his deep, panicked cries rang out loud and clear. Before Trish could gather their things to make an escape out the back door, Max approached the school administrator and asked if he could address the crowd. She quickly stood to the side and gave Max access to the mic. He then told the room full of students and faculty that his baby brother was in the audience, he pointed Rudy out, proceeded to explain that Rudy doesn’t tolerate applause and asked if everyone would use the ASL sign for “applause” instead which consists of holding your hands in the air and twisting them back and forth a couple of times. Max’s quick thinking and confidence to follow through with his instinct is just one example how Rudy’s siblings have become heroes, themselves!  

 In a recent blog post, Trish writes, “Not much has turned out like we thought it would, which carries its share of heartbreak. But there’s also much cause for rejoicing. The delicate little kid with the stringy curls and battle scars who fought his way home is a far cry from the happy, robust and squirmy boy we have today. His bewildered stare has turned into a smile for everyone he meets–there are times where he just seems to exude love and joy from every pore. It’s been a journey of concern and anguish, but also richness and beauty like we never imagined; and we’ve drank deeply from that these last two years.”  

 Trish could have sunk into despair with Rudy’s arrival, and spent her energies on self pity.  Instead, she mustered the courage of an Everyday Hero, and served as an inspiration and genuine help to parents of other children with special needs. We are lucky to call Trish a castmate and friend, and to nominate her for this award which she so richly deserves.  

Sincerely,  

Members of UWP Cast C 1986:  

David Aurilio (California), Nicole Coppens (Belgium), John Fedynich (New Jersey), Forrest Nelson (Japan), Kendra Reid (California), Kristin Sellers Schneider (Ohio), Charlene Noel Soucy (Rhode Island), Lee Swider Wiensch (Wisconsin), and Jim Williams (New York)”  

 
 
 
 
 
 
 

   

 

  

 
 
"Stunned" would be an understatement!!!
Of course, the program wouldn't be complete without a "UWP Theme Song" sing-a-long...complete with swing claps!
Even Rolf couldn't resist engaging in our "happy high"!

The rest of the night is somewhat of a blur…the day ended with our cast gathered in a suite sharing until the wee hours of the morning about our lives since our tour ended.   With just a few hours sleep, it was time to wake up and make our way to rehearsal for the “Era Show” to be performed that evening.  The casts from each year represented performed a few songs from their show.  I hadn’t laughed that hard in a long time but the Casts of 86-87 still had IT!  

"How does that vamp go again?"
"Oh my, fake it and smile!"
"It's coming back!"
 
"Tah - Dah!"
 
And look! We even ate our lunch on the floor after rehearsal...just like we used to!
 
After a quick dip in the pool, we all cleaned up for a group photo...Cast C is looking good!
 
And then it was off to the show...an excited audience of Uppies! I'll spare you video clips of the performance...ha, ha
I know most of you don’t know any of these people but I just have to include these pics for my own keepsake and those in the cast who couldn’t come.  Jim, these are for you especially!  After all you did, it’s just wrong that you couldn’t come afterall!!  Precious people….uh, Dave, why are you in almost every shot?…

   

  

  

And the music didn't stop after the curtain closed...Cast C snagged a lobby piano and had their own after-party!
One last song...

And then it was over…just like that…in less than 48 hours, Rolf and I were back on the plane  headed for home.  There is so much for which I’m grateful in this experience…for Rolf making it possible on our end to even make the trip, for his willingness to participate in the fun and for embracing these friends of mine from so long ago.  I’m so thankful for the friends here in SB that gave of their time to care so sweetly for all the kids and I’m blown away by the big kids’  ability to keep the secret, willingness to let mom and dad go away without incident and by their mature support in general .  And, as for the members of Cast C, well, I’m humbled.  The generosity you’ve extended to a friend you haven’t seen in 25 years is quite remarkable.  Your efforts leading up to the reunion and throughout the weekend have left me feeling affirmed, loved, honored and inspired.  Our cast has seen it’s share of heartache and loss in the years since we toured and sharing a bit of ourselves with each other this weekend brings a deeper awareness of hope and encouragement knowing we are not alone…we continue to carry one another in our hearts…and that is the greatest gift -as was the laughter.   Oh, the laughter!!  How fabulous it was to laugh!  🙂     Bless you dear friends…and thank you for EVERYTHING!  

And lest you think this post is a little self-promoting on my part, let’s not forget that it all comes down to this little guy…  

  

This weekend would not have unfolded the way it did if it weren’t for Rudy…it was a real thrill to share so much about Rudy (and family) to a community of Uppies spanning 40 years!  And I sure pray I have the opportunity to introduce Rudy in person to the greatest cast ever – see you in 5 years Cast C!!!!  

 

 

 

 

 

Lots of smiles this weekend

But none more precious than these…

Not sure we’ll ever forget this weekend and all of the love and affirmation. Thanks to Jim, John and all the Uppies who had a hand in making the award weekend possible.  And many thanks to the crew here in SB (Lisa, Jannele, Sherry, Tera, Evelyn, Gina, Dodi, Lauren, Greg) who held things down seamlessly on the home front and managed to pull off the big surprise.

Rudy is very proud of his mama and approves of the trophy!

Life among the Uppies

OK, the surprise is done. Trish is having fun connecting with friends, reliving memories and dusting off a few of the old show tunes. Though I view being the Grinch’s understudy in 6th grade as significant theatrical experience, no one is all that impressed and they won’t let me into the reunion show (Divas!). This whole “Up With People” thing is a new experience for me and perhaps many Rudy fans, so let me give you and idea of what goes on.

Whenever you get a critical mass of Uppies in one room, a well-produced catchy production number is bound to break out.

There are happy people singing happy songs. Even the most jaded toe will start tapping. You start to feel good–like you’re special and maybe there’s hope for the world. Just in case you mood hasn’t approached giddiness, they’ve got just the thing waiting in the wings…(cue children of the world singing about a bright future)

Works everytime. Now, they release them into the audience and the inevitable sing-and-dance along cannot be resisted. Some get more caught up in the frenzy than others.

Hard to figure how Trish joined up with this crew. Must go ponder by the pool.

A quick recap

I am sure Trish will post in more detail when we get back home and there are certainly better pics than these, but here’s a quick summary to satisfy all those who are wondering.

We pulled off a great surprise. Trish had no idea it was coming, but still came off looking resplendent up on the big screens.

A nice tribute out in the lobby–we’ll put the text up later this week.