Reality Check

October 27, 2016 by

This week has been a bit of a reality check as Rudy has had both developmental and medical evaluations.  Here’s a recap:

Rudy’s IEP was on Tuesday morning.  This is an annual meeting of Rudy’s educators to establish an individual educational plan and discuss his various academic, social and physical goals.  This year’s IEP was particularly comprehensive as it included a triennial reevaluation to determine Rudy’s eligibility for services.  The eligibility assessment team included Rudy’s special education teacher, his adaptive PE specialist, district phycologist, district nurse, the speech and language pathologist and occupational therapist.  All were in attendance today along with Rudy’s CCS OT & PT, his general ed classroom teacher, district special services representative, Rolf and myself.

There weren’t any big surprises and, in general, we couldn’t be more pleased with Rudy’s progress and attitude toward school.  He is motivated to learn (most of the time) and eager to put what he’s learning to practice (especially when it involves sporting equipment of any kind)!  ;)  All in all, IEPs are a positive experience and Rolf and I always leave grateful for the community of professionals who pour so much energy and expertise into our boy. That being said, IEPs are also a bit difficult to face as they are designed to take a microscopic look at Rudy’s deficiencies and areas of need…even more so in the triennial.

The report presented on Tuesday determined Rudy’s eligibility and need for continued special education and related services based on the following criteria: Intellectual disability, Orthopedic Impairment, Multiple Disabilities, Health Impairment and Speech or Language Impairment.  One change is that as Rudy gets older and the academic divide between Rudy and his typical classmates becomes wider, the time Rudy spends in his special ed classroom becomes greater (the special ed/general ed split that was 50/50 the last couple of years is now more like 75/25).  In addition, the triennial report included approximate age equivalent determinations based on the psychologist’s assessments.  Rudy was tested in cognitive functioning categories like fluid reasoning, knowledge, quantitative reasoning, visual spatial processing and working memory (resulting in an average age equivalency of 3 years and 5 months) as well as in social/emotional functioning categories like communication, daily living skills, socialization and gross/fine motor skills (resulting in an average age equivalency of 3 years and 3 months)…it’s not something I dwell on too much but it does make me a little sad.

On Wednesday, Rudy had his routine appointment with Dr. Harake and monthly blood draw.  Thankfully there isn’t a significant change in the ventricle size or the tricuspid valve leakage since Rudy’s echo 2 months ago…still moderate to severe…and his hemoglobin level is still at 21.  Rudy’s next appt at the Heart Clinic/UCLA is December 8th and we see Dr. Harake again on December 20th.  In the meantime, Drs. Harake and Dan have recommended we schedule an appointment with Rudy’s surgeon so we are hoping to coordinate that consult with our trip down on December 8th.  We’ll see.

There has been a lot to process this week, my brain is tired.   It’s time to refocus and prepare for Halloween and all the fun of the next few days.  The holiday season is upon us and I’m ready!!  Let me be the first to wish you a Happy Hallowthanksmas!!!



Rudy at the pumpkin patch with his classmates today.


He picked out a good one!



A Weekend Full of Fun

October 24, 2016 by

Since there will be much to document this week, I thought I’d slip in a quick update on our weekend that included a homecoming halftime, good time with dear friends, a camp fundraiser AND Monster Ball!!  I just love fall…the cooler weather, the fun festivities and all the yummy comfort food!  :)

Max had the honor of being a member of the 2016 Homecoming court.  The football game and crowning of the queen happened on Friday night.  The king is crowned at the dance which isn’t until November 5th so Max can’t hang up his royal hat just yet.


The little prince with the Homecoming prince!




Prince Max and Princess Joanna


The traditional convertible parade!

Rolf, Rudy and I headed down to LA Saturday morning for the annual Camp del Corazon Family Festival & Reunion fundraiser.  Thanks to the generosity of “Team Rudy”, we were the 2nd top fundraiser!  Woo Hoo!!!  Way to go Team Rudy!


2nd Place fundraisers!!


Celebrating with Lisa Knight – Camp del Corazon co-founder!


It’s always a huge encouragement to connect with Rudy’s former CTICU nurses…


…and HLHS survivor Jeni & her husband Nick!!

Then, on Sunday, we went to the annual Monster Ball party with many of Rudy’s special needs buddies and the UCSB Gauchos!


Rudy getting some pointers from Gaucho Alex.


Rudy and Alex met last year and had fun reconnecting!


Rudy has quite an arm…


…and swing!


Thank you Gauchos!!

The Gauchos’ head coach has a son and daughter who went to preschool with Rudy.  Shortly after we arrived, Coach brought his son over to Rudy to say “hi”…his son took one look at Rudy and said to his dad “That’s not the same Rudy!”.  Ha Ha  I LOVE IT!!!

Olivia and Wilson had big weekends too…


Olivia ran in the Mt. SAC X-Country Invitational…


…and Wilson competed in the Task Force South Ranger Challenge competition. His team finished in 1st place earning them a trip to Ft. Lewis in a few weeks for the next round of competition.

It was a big weekend for the whole family.

Next up?  Rudy’s triennial IEP meeting tomorrow, cardiology appointment on Wednesday, and a visit to the pumpkin patch on Thursday!  Yay Fall!!  :)



A New Season

October 20, 2016 by

This has been a different fall for our family.  With our AYSO days behind us, fall doesn’t have the same kind of intensity as it once did with multiple evening practices, Saturday games and “Coach Rolf” at the helm.  :)  The big kids are more and more independent and, more and more, Rolf, Rudy and I find ourselves chillin’ at home in the evenings.  A new season is emerging indeed.  ;)

I think we’ve appreciated being a little less CRAZY BUSY this fall but we sure haven’t had a deficit of fun…quick visits from friends and fun milestones have kept our family on our toes!


One of the great advantages of living on the Central Coast is that we make a handy pit stop for friends heading up and down the coast! Rudy clowning around with Judy!🙂


Olivia was excited to receive special recognition from her XC coaches last week. She’s off to another overnight meet this weekend and enjoying the experiences she’s having with the High School team.

There was another special accomplishment in the family last week.  ‘Thought I’d give you a “behind the scenes” look at our family’s response to said accomplishment…





I appreciate Max keeping it real, Wilson’s PSA and just LOVE that Olivia managed to incorporate the word “magical” into her response!!!  We celebrate bowel movements…especially those that occur in the potty.

The celebrations continued (I’m sure Maya will love this segue) with a quick visit from Maya sandwiched between engagements on her calendar:


Yep, folks, he went there!  (Wilson was home too but, sadly, I failed to get him in the shot!  Wilson!!!, why aren’t you in this picture????)




Poster boy for “mischievous”…


…and, of course, we made a stop at Kyle’s Kitchen! Surprise, Surprise!!  Ha Ha!




Rudy and friend Thomas were twinning at church on Sunday.


Max and Olivia were twinning too!…For spirit day at school!!!!

Ha Ha!  Fun stuff!

So, we have a big week ahead:

Rolf, Rudy and I are heading down to North Hollywood on Saturday for the annual Camp del Corazon Family Festival and Fundraiser.  We’ve been raising $ this month for this amazing organization in honor of Rudy’s birthday…if you’d like to learn more about CdC or make a donation, click here!

Rudy’s annual IEP is next Tuesday…this will be a particularly thorough IEP as it is his triennial so we expect to examine all aspects of his educational plan with many voices speaking into the assessment…always an interesting (and somewhat emotionally exhausting) process!

Then, on Wednesday, Rudy has his regular echocardiogram and exam with Dr. Harake.  I try hard to resist the temptation of living from one appointment to the next but, I admit, I’m eager to check in with Dr. H and get the latest echo info. We’ll keep you posted…

In the meantime, enjoy the sights, scents and yummy flavors of autumn!  May the changing of the season bring refreshment to our hearts and souls.  ;)



Happy 8th Birthday Rudy!

October 2, 2016 by


Rudy celebrated his 8th birthday out at the Dos Pueblos Ranch yesterday with approximately 324 guests!  Although Rudy meandered around the ranch believing all the preparation and commotion were for him, we were actually there to participate in the 15th annual Back to the Bayou fundraising event for the Santa Barbara Rescue Mission.  Sadly, we were so busy that none of us took any pictures at the ranch but we did enjoy a little post-Bayou party at home later that evening.  It was a full day for our family but Rudy definitely felt celebrated in the midst of all the activity and we were blessed to share the day with so many SBRM friends & supporters who have a personal interest in and love for our family as well…the best birthday gift one can get is to know how very much he is loved and Rudy certainly got that tenfold!  Happy Birthday Rudy!!!


An intimate dinner party on the ranch!


A Bayou after-party with friends Jeremy and Becky!


Olivia worked hard making Rudy’s Lightening McQueen cake just right…


…and Rudy worked hard  “eating” it!





Birthday Eve 2016

September 30, 2016 by

Rudy got a jump start on celebrating today with his friends and teachers at school…a birthday so big it will likely fill two blog post updates so here’s pictorial proof of Birthday Fun – Day 1!!


Rudy got a hug and special greeting from Nurse Evelyn first thing this morning…


…and then he got some birthday love from Mr. Latta and…


…a few of his 2nd grade friends.


Miss Ginny was all smiles on the playground with Rudy during recess!


I brought a bunch of extra oxygen tubing to the classroom in the afternoon to make “silly straw” glasses with Rudy’s special ed classmates…


…even the grown ups got in on the giggly fun!!


Special friends!!


The day ended with a very special visit from Christoph (cousin from Austria)!!


A simply delightful evening…and a perfect end to a very special day!!!

It’s time to hit the hay…we all have a BIG DAY tomorrow as we continue the celebration at the 15th annual “Back to the Bayou” event supporting the Santa Barbara Rescue Mission!!  The Rescue Mission community was such a huge encouragement to us when Rudy was born, it will be fun to share tomorrow together!  :)  Happy Birthday Eve Rudy!!!  It’ll be your official birthday in just 26 minutes!!!!!

Settled In and Moving On

September 11, 2016 by

School has been in session for a couple of weeks and all are settled back into the structured school/work/athletic & therapy schedules that keep this family on the go.  I hear good reports each day from Rudy’s new teacher and aide and we are looking forward to hearing more about his class at “Back To School” night this week.  After taking the month of August off at the Medical Therapy Unit, Rudy is back on the schedule with two PT and two OT sessions per week…this is in addition to the Adaptive PE, OT and speech therapy he gets at school so he definitely has a full slate of services that keep him working hard Monday through Friday.

We haven’t had any more discussions with the team at UCLA since our consult with Dr. Harake a couple of weeks ago.  Rolf hopes to make contact with Dr. Dan sometime this week to follow up on the post-cath conference.  I don’t expect there will be any major revelations as a result but the ongoing discussions and our inquiries keep Rudy on everybody’s radar and fan our hope that maybe, just maybe, something more favorable than what we have now will come out of it.    We’ll keep you posted…

One facet of our family’s life may be stuck in perpetual limbo, but the many others are charging forward as life tends to do so we’ve embraced all the transitions of the past couple of weeks and the fun milestones reached.  Life goes on and, despite what is (and isn’t) going on in Rudy’s body,  he is most definitely front and center in it all…a gift not lost on us.


Rudy was an enthusiastic helper getting Wilson settled back into college…


…he LOVES being “one of the guys” when hanging out with Wilson and his roommates!


Max had to work on “move in” day but the rest of us helped usher Wilson into his sophomore year at APU! Go Cougars!!


Rudy and his schoolmates had the fun opportunity to hear from Mountainview Elementary alum, US Women’s Water Polo team member and Olympic Gold medalist Kiley Neushul who visited the school recently.🙂 So sweet! Rudy sure admired her gold medal.


He’s also very proud of his new pair of shoes!


A sweet moment captured at Ventura Pier at Rolf’s SUP race…


…and in Ventura again a week later for Olivia’s first high school XC meet!


Speaking of Olivia…she turned 14 years old on Friday and celebrated with donuts…


…and a little pool party in the afternoon…


…and a little dinner party in the evening! Life is rich for this young lady!!


Speaking of life being rich, Rudy demonstrated his independence the past couple of weeks at church by sitting in the front row with friends. Another friend captured this picture of him praying today which pretty much melted all our hearts. Rudy is blessed to be a part of such a loving and genuine church community!

It’s hard to believe but Rudy’s birthday is just 2 1/2 weeks away!  He gets to celebrate with 300+ friends as it falls this year on the same day as the SBRM’s big annual Bayou Event!!  There is much to look forward to and lots of hard work ahead these next couple of weeks as we prepare.  Woo Hoo!



Family, Friends and Friends who feel like Family.

August 26, 2016 by

We sure have packed a good bit of quality time with people we love in the past two weeks…Rolf made it home safely from Rio after sharing a most incredible life experience with dear friends:


Goofing around in Rio with Ruben.

Oma came to Goleta and took on Rudy duty for a few days so I could visit my mom & extended family in Kansas:


Fun in Quinter, KS with Gma Jo and lifelong friend Eugenia!!


Good times in Goleta with Oma!

And Rudy’s godparents visited for a couple of days from San Diego!!!!!:


A whole lotta love from Marlin and Grace!

The visits have been brief for the most part but significant on so many levels and good for the soul nonetheless.  We are deeply blessed by the rich relationships in the life of our family and this whole summer, frankly, has been a big reminder of that.

I got home from KS on Sunday and our household jumped back into the swing of the new school year on Monday.  Max and Olivia were the first ones to go:


First day of school for Max and Olivia – August 22nd.


The taking of the traditional 1st day of school photo!


12th grader Maxo and 9th grader Olivia!


The big send-off by Wilson and Rudy…

Rudy was next:


Rudy’s 1st day of school – August 24th.


So, so happy to start another school year!


Rudy’s new teacher Ms. Ochoa and his aide Jennifer!


Ms. Ochoa rolled out the red carpet for her 2nd and 3rd graders…


1st day of 2nd grade!!!

Wilson left for APU on Thursday and starts his classes next week.  We’re heading down to Azusa on Sunday to take the rest of his things and say our official “goodbye”…it was hard to see him go after our fun family summer together but his excitement about getting back to campus and his friends made it a lot easier this time around.  :)

We ended this crazy week with an appointment with Dr. Harake (SB Cardiologist).  We typically see Dr. Harake within a week of a cath but the appt wasn’t automatically generated after Rudy’s cath in July (as it typically is at the time of discharge) and I dropped the ball on our end as the summer filled up so today’s visit was a little over a month and a half LATE!!!  Yikes!!!  I felt a little irresponsible after talking with Dr. Harake’s office to set up the appointment earlier in the week.  Thankfully Rudy was fine and recovered well from his cath on July 8th but not scheduling a post-cath follow up with Dr. Harake isn’t something we should do in the future.

The discussion today was sobering.  Today’s echo showed that Rudy’s atrium is three times it’s normal size and is bigger than it was in May.  Our discussion turned to the cath results and how it effects where we go from here.  The cath showed that the pressure in Rudy’s lungs has lessened which is significant because Rudy’s high pulmonary pressure (known at pulmonary hypertension) has been a major factor in preventing him from having a successful Glenn and/or heart transplant.  Low pulmonary pressures potentially put surgical options back on the table for Rudy.  I think it’s fair to say that Dr. Harake sees this as a good thing but doesn’t necessarily see it as a green light for surgery.

The reality is that Rudy has been a high risk for surgery for more reasons than just pulmonary hypertension and those other factors are still present.  In addition to the risks that remain, there also remains the question whether or not the rate at which the Glenn will reduce the stress on Rudy’s heart is worth it.  In other words, can the Glenn reduce enough stress on the heart to make a noticeable difference?  Although it’s impossible to predict an outcome, it is possible to factor a general mortality rate given the variables with which we are working.  Dr. Harake encouraged us to think about what an acceptable mortality rate would be for us going into surgery.  That’s certainly a difficult question to answer…a tough process to wrap the brain around.  We haven’t heard back from the team at UCLA yet but Dr. Harake’s counsel is helpful and we pray the conference on Rudy’s case will bring some clarity.  We need good information in the midst of a confusing mountain of unknowns.

Dr. Harake also encouraged us to keep a close eye on ANY possible source of infection whether it be in his oral health or in the redness surrounding an elbow abrasion.  He warned us that a topical infection that enters the bloodstream will attack a vulnerable, compromised ventricle with deadly consequences and so it’s important for us to be vigilant in the prevention of infection.  (Yikes!)  We’ve always known this to be true but today’s warning felt more direct than usual…and heavy in light of everything else.  So, prayers for discernment and protection are at the top of the list…discernment in the decision-making process (still) and protection for Rudy’s heart in the meantime.   I’m ending the week zapped of energy and guarded…grateful but also concerned.  This journey sure can leave one feeling pretty manic/depressive from one day to the next so I’m praying for balance in the midst of conflicting reports as well as stability in this season of adjustments for the whole family.

Here’s one last look at summer:


Boy at the beach.

Happy “Back to School” dear ones!!!

Random Stuff…and Rio.

August 13, 2016 by

To say life has been a bit of a whirlwind the past couple of weeks would be an understatement…

…Rolf jetted off to Rio (Yep, I said Rio!!) 10 days ago to watch our goddaughter compete in the Olympics, Wilson headed down to Azusa for a couple of days to practice with his fellow campus worship team members for this next school year, Olivia trotted up to Mammoth with the DPHS XCountry team for a week of altitude training and Max has been working double shifts at Kyle’s.  Rudy and I?  Well, we’ve been holding down the fort at home and enjoying a few last minute visits with friends from LA and Orange County.  The fun doesn’t stop there though?  Rolf’s mom flew in yesterday for a couple of weeks, I’m headed to KS next week to visit my mom and the big kids start school the day after I get back!!!!  The end of summer is closing in fast!!  Boo Hoo…this mama is never ready for summer to end!!!

Our family will all be back under one roof tomorrow and the rest of us are eager to hear all about Rolf’s Rio Adventure…I’ll refrain from sharing too much about it now and let Rolf tell his own story but I will say that the highlight of the Olympic coverage for me the past 10 days was watching (our goddaughter) Maya’s response to each success she had…she swam four events, she won four medals (bronze, silver and 2 gold) and each time she was interviewed, she communicated gratitude for the experience and joy over Team USA’s overall success.  She thoroughly enjoyed the personal experiences she was having but always presented herself as a team player.  She was simply delightful to watch and I’m so proud of every expression, every gesture, every move I saw her make in this once in a lifetime opportunity…that’s a pretty remarkable thing to be able to say.  Congratulations Maya!  And THANK YOU…for representing well and glorifying God in the process!


Rudy cheering loud for Maya at home!!!


The Geyling family representative in Rio with 4-time Olympic medal winner Maya DiRado!

Soooo, now, it’s time to regroup, refocus and wrap our brains around the start of school…in less than two weeks.   Rudy has some big adjustments ahead.  He will be moving up to the next special ed day class at his school with a new teacher and older classmates, he will go from mainstreaming in a Kindergarten class to mainstreaming in a 2nd grade class and, most notably, he will have a new caregiver.  :(  Dear Nurse Sara accepted a position at our local hospital over the summer and won’t be returning to Mountainview.  We are so very thrilled for her but she will definitely be missed.


Some summer fun with Nurse Sara!


High 5 for being a GREAT NURSE!!!🙂

With all that is going on at the end of our summer break, I won’t have the time to prepare our family for the start of school as I typically do so I’m praying now for prepared minds and hearts and all around good adjustments for all the kids.  Olivia and Max start classes at the high school (9th and 12th grade) on August 22nd, Rudy starts 2nd grade on August 24th and Wilson heads back to APU on the 25th.  (Big sigh!)  Oh well, summer was fun while it lasted!

Medical update:  We haven’t had any follow up with Rudy’s docs since last month’s cath so another BIG ITEM on my TO DO list when I get back from Kansas is to connect with Dr. Harake and hear his thoughts on the cath report.  As I mentioned before, I suspect we won’t be moving forward with surgery quickly but it’s important to keep the group discussions going…there is still much to process.  We sure appreciate your continued prayers!!!

Thank you and bless you friends!


Just because…this picture makes me smile!!

On The Road Again…Up With People Style!

August 3, 2016 by

Five years ago, I was gifted a surprise trip to Tucson to attend my 25yr Up With People Reunion…click here for more information about Reunion 2011!  Well, as hard as it is to believe, five years have passed already and last week marked my cast’s 30 year milestone!  Once again, Rolf and I packed our bags for what was sure to be another memorable trip.  What made this year’s experience even better than 5 years ago is the fact that I knew we were going so I had the pleasure of anticipating all the fun AND we made it a family road trip adventure!  So. special.


On the road and ready for some fun!

It’s impossible to have an UWP encounter and NOT come away with a deep, deep appreciation for the unique experience I shared with 120 cast members/staff 30 years ago.  Looking back on our yearlong, international tour, I’m amazed at the depth of friendship then and thrilled by the genuine friendship we still share thirty years later!  Cast C ’86  had over 50 cast members in attendance at this year’s reunion (a remarkable turnout) and it was an absolute JOY to squeeze every moment of our 3 days together to hug, reminisce, hug, catch up on family news, hug, share heartaches, hug, celebrate the triumphs and, most importantly, laugh (oh, and hug some more)!!!! 😉  At one point, as Wilson and I walked back to our room after a late night cast meeting, he said to me “Mom, it’s so fun watching you have so much fun!”.  So. sweet.


Cast C ’86 – 2016 Reunion attendees


Uppie offspring in attendance this year!

The highlight of the reunion for me was, by far, introducing my kids to this special group of friends and vice versa.  I can’t tell you how many times a cast member came up to the kids and said “you don’t know me, but I know who you are because I stalk your family on Facebook”.  ha ha  As I expected, my kids fell in love with this crazy extended family of mine and Rudy was thrilled with all the extra attention!!!


…a little love from Melanie…


…and Maria…


…and Annie O!


Fun with John the BEST Cast Rep of all time!!…


…and Danny the BEST tour bus driver (an honor shared with Floyd, of course)!


“Uncle” Jim…


…and “Uncle” Davey!


Shinanigans with Mike…


…and mischief with fellow offspring Alana and Hannah!

We managed to carve out some quality family time as well…


Dance Party!!!


Poolside BINGO (with Hannah too)!!!


Once an Uppie, always an Uppie!


“Beat of the Future”

After experiences like this, I can’t help but think about a prayer I prayed shortly after Rudy’s diagnosis and again after his open heart surgery when he encountered one set back after another…I prayed that he would live long enough to be known and that his life would be remembered!  :)  That prayer continues to be answered…beyond my expectations.  I’m so grateful for the opportunity to introduce Rudy and the big sibs to another special international community in my life.  Already looking forward to more memory making moments at #35!!!


Bye, Bye Tucson!!! We like your crazy cacti!!!



Rudy’s Summer Break!

July 26, 2016 by

Rudy’s summer school session ended last week so he is now officially on summer break!  Woo Hoo!!!  He recently discovered the joy of Mario Kart on Wii and has become a video game junkie the last couple of days…aaaah summer!  Rudy has actually REALLY enjoyed being home with nothing to do but play video games and swim.  We pushed him pretty hard the week after the cath as he had his regular school/therapy schedule AND Vacation Bible School at our church each evening AND we decided to cap off the week with a day at Disneyland to visit cousin Josh!  Although Rudy wasn’t a particularly willing participant in any of it, he ended up going with the flow with a little encouragement and we made some fun memories nonetheless…


Rudy on “Sea Creature” night at VBS!


Doin’ Dland with cousin Josh!!! Rudy wasn’t too keen on the crowds but the rest of us had a blast…


We did, however, get him to smile with Mater!


Our new favorite attraction is the Animation Academy in California Adventure…so. much. fun.

We made it home from Disneyland in time (with TWO hours to spare) to see Rolf off to the airport for a business trip to Chicago and then we had a day to get ready for Wilson’s return from Ft. Knox.  His month of training was full and grueling and challenging but he felt good about it in the end and was almost as happy to be home as we were to have him home…;)

CIET Graduation

Wilson’s CIET Graduation…he’s the second one in on the first row. Ft. Knox, KY


Somebody’s super happy to have his roommate back!

In the week that Wilson has been back Rolf made it home from Chicago, we hosted 18 graduates of the SBRM Residential Recovery Program for dinner, celebrated their accomplishments at a standing room only graduation event on Saturday night and enjoyed quick visits with dear friends from our days in South Central a couple of lifetimes ago…what a rich, RICH week…full of big doses of hope and reminders of God’s grace over and over again!  We have about a week and a half all together before different members of the family jet-set off in different directions so we’re taking advantage of EVERY minute and soaking up some good family time.  Happy Summer Rudy!!


A couple of dapper dudes at the SBRM graduation.


The photo credit for this little gem goes to Dale Weber! LOVE it!!!