Archive for the ‘Pictures’ Category

Spring Break Is Here!

March 26, 2017

It’s Sunday afternoon and there is a big sigh of relief over the fact that there is no school tomorrow or the day after that or the day after that…etc!  We have a week off from school, sports and therapy and we’re pretty happy about it.  Rudy got a head start on spring break as the Goleta Unified School District schools had Friday off as well.  Woo Hoo!!!  Actually, I’m not sure Rudy is all that thrilled about spring break.  He loves going to school and being with his friends!  😉  What a blessing it is to know he is in a loving and stimulating educational environment that he enjoys so much.

IMG_5645

Ms. Ochoa and aide Daniel joining Rudy in some Move-a-thon fun!

IMG_5655

Rudy and his typical classmates in Mr. Latta’s 2nd grade class.

IMG_5659

A big thank you to all who sent Rudy a $1 during his Facebook $1 school fundraising campaign!  He earned  “Big Paw Sponsor” recognition!!!!

Rudy showed great determination during his school’s annual Move-a-thon last week and he has shown great support on the sidelines of many DPHS Lacrosse games the past couple of weeks…with both Max and Olivia playing lacrosse this spring, we get the fun opportunity to go to twice as many games as in years past!  Rudy has even made himself useful as assistant clock-keeper…

IMG_5673

Keeping a close eye on the game with Dad…

IMG_5680

IMG_5686

Rudy has been working hard on his sight words the past couple of years and began stringing them together to read simple sentences in recent weeks.  Ms. Ochoa started introducing phonics to him recently as well to see how he would respond and he is getting it!  Here’s a little sample of his progress that his teacher sent me:  (sorry the video is a little wonky)  

What a great reminder of how much fun it is to learn!!  🙂  Well, even though Rudy may not be desperate for some time off from school, I think the break this week will do us all some good.  Happy Spring Break Everybody!!

Early Show of Spring

March 16, 2017

Spring has sprung early here in the Goodland!  After all the fabulous rain we got this winter, the hills surrounding Santa Barbara are green again and the spring blossoms decided it was time to make their grand entrance…the California poppy fields are bursting and the scent of orange blossom is filling our backyard…it’s simply lovely.  This along with Wilson’s visit last week for his spring break AND the start of lacrosse season are contributing to my premature SPRING FEVER (an unfortunate condition that quickly transitions into SUMMER FEVER for me and, of course, it’s much too early to be dreaming about the lazy days of summer)!!  Ha Ha  So, this week has definitely been an exercise in keeping focused on the present.

Rudy sure was in heaven having Wilson home for a week…

IMG_5595

…there was a lot of this going on…

IMG_5596

…as well as a lot of this!

Wilson picked a fun week to be home as we enjoyed a ton of fun celebrations that included Max’s 18th Birthday and a SBRM graduation!

IMG_5603

Our household now includes FOUR adults!  Wait, WHAAAAAAT?

IMG_5605

Nothing says “Turning 18” like an epic game of ultimate frisbee with friends!

IMG_5610

Quality Friends = Quality Life

17155167_10154728764019079_5618018168834433162_n

There was another amazing show of support for the 20 individuals who graduated from the SBRM residential recovery program on Saturday night!  Another vivid example of Quality Friends = Quality Life!  (PC: Dale Weber)

Senior fun for Max is starting to amp up as his class begins the last quarter of the school year.  Last week was the “Senior Lip Sync” event, this week is the “Team Grease Pole” competition and prom preparations have already begun!  It’s a blessing to watch him and his friends enjoy this special season…

IMG_5587

The birth of a new boy band!

IMG_5691

IMG_5591

lip sync shinanigans

Lacrosse is here!  Max started his third season on the boys varsity team at an away game last week and Olivia started her very first season of LAX on the girls jr. varsity team with a home game against local rivals San Marcos HS.  Bestie and SMHS sophomore Cady demonstrated true friendship by coming and cheering for Olivia while she played against her SM classmates!

IMG_5599

This rookie is grateful for the support from Kyla and Cady!

IMG_5600

Quality Friends = Quality Life!

As for Rudy?  Well, he’s definitely earning the nickname “Rudy the rascal” this week.  Ha Ha 🙂  He sure got a ton of special attention last week and was more active than usual so this week has been a week of testing boundaries and realigning.  I think we’re all looking forward to spring break in a couple of weeks.  We don’t have any special plans but we sure are looking forward to time off from the usual routine.

IMG_5632

Rudy’s spring parent/teacher conference was this week…it was a student-led conference where Rudy demonstrated his daily activities and learning procedures.  He’s making progress and even read his FIRST sentence this month!!!  Way to go Rudy!  Thank you Ms. Ochoa and Team!!!

Up next?  Well, Rolf has a couple of trips coming up before the end of the month and I have my very first colonoscopy to look forward to the first week of April!  Fun!  I wouldn’t mind inserting (no pun intended) a plan for some fun outings before then…possibly a drive up into the hills to show Rudy the poppies and/or a day trip to Universal Studios to see the new Harry Potter World.  We definitely need to soak up the beauty and take advantage of our early spring!  Warm hugs to all our dear family and friends who are getting blasted by snow and frigid temps!!!  Sorry for the spring tease…love to all.

main-picture-1

IMG_5635

backyard orange blossom…I wish you could smell it!

IMG_5629

Quality Friends = Quality Life!  😉

Happy Birthday…to me

February 27, 2017

As many of you noticed, Rudy’s Beat got hacked over the weekend so our apologies for any confusion.  We won’t ever post a link unless there is a clear connection to Rudy so be aware of vague, unknown links if it happens again.  🙂

Rest assured, this post IS from me!  Today is February 27th which means another month in 2017 has flown by as well as another YEAR in the life of me!!  Hello 51!

I was blessed to kick off my birthday weekend with a trip to one of my favorite cities!  We loaded up the van and headed down to San Diego on Friday for a special wedding celebration and for a quick visit to PLNU.    I lived in San Diego for only a couple of years before I married Rolf but I sure have a trove of special memories from that time in my life and relish any opportunity we get to visit…

img_5503

img_5509

Max had a quick meeting with the co-chair of the music department at PLNU on Saturday so Rolf, Livy, Rudy and I enjoyed a little walk through campus while we waited…one of the prettiest campuses on our coast for sure!!

img_5516

Soon to be a Sea Lion!

img_5521

img_5533

Love this boy!

img_5513

Rudy approves.

img_5574

It isn’t a visit to San Diego without a stop at El Indio!!!

img_5507

We were honored to celebrate with our friends Grace and Marlin (Rudy’s godparents) at the wedding of their son Luke and his lovely bride Hollie…precious!

img_5565

Rudy & Mr. and Mrs. VanNortwick

img_5563

Rudy and godmom Grace!

img_5553

Tearing up the dance floor with the big sibs…

img_5569

Waiting to send off the bride and groom…

img_5577

So long Van Clan! Thanks for all the fun!

img_5539

Wilson would have joined us if he hadn’t had a special event of his own to attend…He and his friend Leah enjoyed the 2017 Military Ball on Friday night!

Aw man, I could have extended our stay a couple of days but we got home in time to watch the Oscars last night and it’s back to the regular work/school routine this week.  Wilson comes home on Friday for his spring break so we have something special to look forward to.

Speaking of something special, Rolf was recognized at the SBRM Board of Directors meeting this month for his 10 years of service!  It’s hard to believe that Rolf started directing the work of the rescue mission ten years ago in January…we knew this would be a significant experience for our family when we relocated to Santa Barbara after our 15 years in Los Angeles but, of course, we couldn’t have imagined how truly rich life would become…even amid the heartbreak and challenge.  Our whole family has been shaped by our relationship with the dear people of the Santa Barbara Rescue Mission from the staff and residents and guests to the board members and volunteers!   How very grateful we are for this community as a whole and for the opportunity to minister alongside such amazing individuals.  Yay SBRM!!

img_5467

Medical Update:

Rudy had his routine echo exam with Dr. Harake on Thursday and, thankfully, there is no notable change in his heart size or valve leakage.  It remains at moderate – severe and his hemoglobin number is high but holding steady at 21.  As was discussed with Rudy’s surgeon back in December, there is no plan to act but Dr. Harake does believe the next issue we’ll need to address is Rudy’s shunt as he continues to grow.  It’s hard to visualize that all of Rudy’s oxygenated and non-oxygenated blood passes through a tube that, at it’s largest, is only 5mm wide:

cdr578121

 

How long his original shunt can sustain his growing body’s blood flow remains a mystery but we applaud it’s stellar performance so far and pray that when he does outgrow it, doors for a next step will open.  Let it flow, Rudy!

img_6683

A beach outing in between our recent string of storms.

 

Rain Out

February 11, 2017

Rudy has been raising money this past week in a $1.00 donation campaign for his school’s Move-a-thon that was supposed to happen yesterday.  Sadly, the Move-a-thon had to be postponed (for the second time!) due to rain.  Spirits might have been dampened a bit but not our gratitude!  A BIG thank you to the dear ones who sent Rudy a $1 (or two!).  Hopefully we’ll get to share some pics of the fun when the school field dries out and the Move-a-thon is rescheduled!

img_5441

A rainy school drop off…full of smiles!

img_5443

Rudy’s name was entered in a school raffle for the donations he turned in and he was one of several winners! Rolf is happy he won the Surf Country Surf Shop gift certificate. Ha Ha

We actually welcome all this rain.  After being in a drought for nearly 5 years, the many winter storm fronts that have passed through our area are desperately needed.  The hills surrounding Santa Barbara are green again and our lakes are filling up!  A good thing for sure.  May our land get it’s fill.  Happy Weekend Everybody!!

Up, Up and Away!

February 7, 2017

Rudy had another big “first” this past weekend.  He (along with Rolf and Max) had his first private plane adventure thanks to a friend of ours here in town.  I really can’t say much about it since I wasn’t there but Rolf was able to capture a bit of the take off on video. Clearly Rudy had something to say there at the end of the short clip but couldn’t quite find the words…priceless!

The Geyling men enjoyed their 30-minute aerial tour of Goleta’s beautiful coast and bird’s eye view of our cul-de-sac.  SO FUN!  A big thanks to Steve (and his dad) for contributing to those “quality of life” experiences that, quite literally, expand world views, lift spirits and fuel dreams!  Awesome!!

img_5432

img_5433

Our cul-de-sac in the top right…

img_5434

img_5435

Thumbs up!

While the boys were flying the friendly skies, Olivia and I had a fun girls weekend visiting friends in Temecula and Los Angeles AND we even snuck in a quick lunch with Wilson! Speaking of Wilson, he was featured on the APU Honors College Facebook page last week.  His quote encouraged me…the occasional sound bite into his life at the ZOO is always a treat.

img_5303

Speaking of college life, Max decided this week that he will be attending Point Loma Nazarene University in the fall!!!!  We are thrilled for him.  I lived in San Diego for a couple of years and LOVED it there…I’m certain Max will fall in love with it too.  Yay PLNU Sea Lions!!!

16388413_565225220333975_4320220196962679708_n

Rudy is definitely feeling more like his old self after battling a virus for a couple of weeks…just in time for his school’s annual Move-a-thon scheduled for this Friday, CHD Awareness Week, Valentines Day, the fun 4-day President’s weekend and a trip to San Diego at the end of the month!!  Woo Hoo!  Stay tuned for some fun pics…;)  Happy February Everybody!!!

Not Yet

January 27, 2017

Rudy had an EEG appointment yesterday.  It has been several years since his last EEG but because Rudy hasn’t had a seizure in almost two years, Dr. Corazza recommended we retest to determine whether or not we can begin to wean Rudy off his daily doses of phenobarbital.  Rudy was a happy and cooperative ROCK STAR during the hour long test and the tech said she was able to get some “beautiful data”!  Dr. Corazza called later in the evening with the results…unfortunately the results are “not normal and continue to show a seizure tendency” so he strongly recommends that we leave Rudy on the pheno for now.  I’m a little disappointed as it would have been super fun to see some healing in this area for Rudy but I’m not surprised given the nature of Rudy’s brain injury.  So, we’ll continue to do what we’ve been doing and pray Rudy’s current dose of phenobarbital will continue to keep the seizures at bay.  He’s actually at the maximum dosage for pheno…if seizures were to surface again, we’d have to make a medication change.  Anti-seizure medications can have some pretty disturbing side effects and Rudy has done so well on pheno that we hope it can be his drug of choice as long as he needs it.

img_5259

On The Mend

January 25, 2017

We’ve had a quiet start to 2017…Wilson headed back to APU the first weekend of January and hit the ground running in his new schedule of classes.  Max and Olivia still had semester finals to prepare for when they headed back to school on the 3rd.  They were thrilled to finish finals week last Friday!!!  Olivia sailed through her first high school finals week and Max is one big step closer to graduation…the countdown is ON!  🙂

Rudy enjoyed getting back to his friends and teachers at school after the long break.  He’s back to his twice weekly physical therapy sessions but has yet to be assigned to a new OT since his last OT retired in December.  He had a routine check-up with his neurologist a couple of weeks ago.  Because Rudy has been seizure-free for almost two years (his last seizure was in Feb. 2/15), Dr. Corazza scheduled an EEG for tomorrow to determine whether or not we can begin to wean Rudy off his anti-seizure medication.  That would be exciting!!!  We’ll keep you posted…

Rudy has been battling his first bug of the season this week.  He was sent home from school early last Thursday and has been home sick ever since.  Thankfully, his fever broke on Monday and his energy is returning.  We’re hoping he’ll sleep through the night tonight (after several sleepless nights) so he can return to school tomorrow.  🙂

img_5241

Rudy happy to be back at school with his friends and teacher Ms. Ochoa!

img_5258

On the mend after a week long viral bug.

Rudy has actually had a long, healthy run the past several months so we pray this bug will run it’s course quickly and be the end of Rudy’s cold and flu season!  😉  ‘Hoping your new year is starting off healthy and happy!

 

A Walking Miracle

December 11, 2016

It’s officially the Christmas season and we’re enjoying all the traditional activities that accompany this time of year.  The kids have one more week of school before their winter break and we’re counting down the days!  😉  I skipped town the week after Thanksgiving to spend a couple of days with my mom in Kansas for her 85th birthday!  It was short but sweet and we made the most of our 2 1/2 day visit…

img_4526

Happy Birthday Gma Jo!

download

While I was gone, Rudy enjoyed a field trip to In ‘n Out with his classmates…

img_3112

img_3113

Yum!

img_4531

…and the start of Maxo’s high school hockey season in Santa Maria…

15317948_10154405549689213_7726387647055098473_n-1

…and when there is a car in the cul-de-sac that looks like “Sheriff” from Radiator Springs, you gotta get out of the minivan to take a picture (even if it means you’ll be late for school!).

I got home from Kansas just in time for a string of Silver By Trish trunk shows and we squeezed in decorating the house as well!

img_4548

Rudy’s impersonation of a Christmas tree!

img_4550

The stockings are hung by the chimney with care…

Rolf, Rudy and I headed down to UCLA early Thursday morning for a visit to the heart clinic and a meeting with Rudy’s surgeon.  Rudy had an extensive echo exam and Dr. Alejos confirmed that there isn’t much change in Rudy’s heart status since his last echo.  Rudy’s tricuspid valve leakage and hematocrit level are high but his heart muscle is strong!

We had some free time between appointments so we visited the PICU on the 5th floor and enjoyed seeing some familiar faces…Roger and Dr. Kelly.  Rudy insisted on walking and he made his way around the 5th floor corridors as if he owned the place…the sight of him walking around those halls that are filled with so many memories never ceases to take our breath away and it’s always great fun to see how those who cared for him in those first several months of his life react to seeing him now. 😉

As we have described before, discussions about what to do next have come to a bit of an impasse since Rudy’s heart cath in July. The contributing doctors in conference who are unfamiliar with Rudy’s history and are just looking at the numbers, feel the Glenn is the logical next step.  Those who know Rudy’s history disagree.  Dr. Dan (cath cardiologist) encouraged us to talk with Dr. Brian Reemtsen (surgeon) directly to help us sift through all the varying opinions.

Although we have had quick consults with Dr. Brian in the hospital hallway after past caths, it has been years since we’ve had a detailed conversation with him and Rolf & I were eager to hear his thoughts on where we stand in Rudy’s treatment plan.  Dr. Reemtsen was direct in his communication with us on Thursday…although there are cardiac indicators and pulmonary progress that would typically represent the need and green light for surgical intervention, he is not recommending surgery at this time.  The main reason being that what can be done surgically wouldn’t make enough of a difference to warrant the risks…even good surgery results wouldn’t bring a marked improvement to Rudy’s life and/or heart function.  Dr. Brian believes the greatest risk to Rudy from a surgical standpoint is his issue with chylous fluid.  Chyle is a milky bodily fluid filled with free fatty acids (FFAs) that is transported through the lymphatic system.  Rudy battled the leakage of chylous fluid in his pleural cavity (chylothroax) for 8 weeks after his heart surgery in 2008 and then again in his abdomen after his stomach surgery in 2009.  During the height of his battle, Rudy lost a third of his body’s total fluid EACH DAY.  Dr. Reemtsen told us that he has never had a patient (or heard of a patient) who had chylothorax as severe as Rudy and survived.  Based on this history, the team is very concerned about the risk of chylous fluid leakage during any future surgery.

He also said that he doesn’t know of anyone who has survived as long as Rudy with no intervention!  Rudy’s current status as a post-Norwood/pre-Glenn patient is working for him and until his heart muscle function starts to deteriorate, he feels strongly that we should leave things as they are.  As he put it, he isn’t wishing we could do something but rather hoping we don’t need to do anything. 

It was a bit surreal to have this serious and, at times, heart-wrenching conversation as Rudy walked circles around the office mischievously playing with the light switches and trying persistently to push every button on Dr. Brian’s computer.   In the middle of it all, Dr. Brian pointed to Rudy and said “if you had told me that he would one day walk into this office, I wouldn’t have believed it!”…particularly meaningful coming from Dr. Reemtsen who is not one to be overly dramatic or prone to exaggerate.

Although our conversation was frank and heavy, it was encouraging all in all.  It was helpful to hear a strong, definitive opinion and Rolf and I left feeling confident we’re in a good space with Rudy.  I think our perspective is slowly shifting from “anxiously waiting to do something” to “actively choosing not to do something“…a surprisingly helpful distinction.   So, for now, the plan is to continue Rudy’s palliative care with a huge emphasis on quality of life, share in Dr. Brian’s hope that we won’t need to do anything and embrace the miracle that he is.

img_4561

Rudy and Dr. Brian are all smiles

img_4559

Rudy in front of the hospital Christmas tree.

Rudy was back at school on Friday and enjoyed a surprise visit from our friend (and Rudy’s fellow HLHS survivor) Jeni…

img_4567

Rudy and Jeni

img_4564

A walk on campus with Jeni and Nurse Evelyn

He and his classmates also enjoyed a surprise visit from Santa (who Rudy promptly called out as special ed aide Todd!!)  Ha Ha

img_4578

Ho, Ho, Ho!

Rudy experienced a first at last week’s monthly blood draw…it was the first time he sat all by himself like a pro:

img_4539

img_4538

Yay!!  Big boy Rudy!

Thank you all for your prayers…since the cath especially.  I think we’ve learned a great deal in the follow-up discussions and there is no denying that God is at work in the unconventional (a.k.a. miraculous) HLHS journey Rudy is on!  Blessings to you dear friends!!

Happy Thanksgiving 2016

November 24, 2016

I’m cuddled up in bed still…getting ready to hit the kitchen for some fun food prep but enjoying the chill in the air and being under the covers.  Rolf is getting ready to go out for his daily paddle and the big kids are still asleep sprawled out on the living room floor after a movie night.  It’s a quiet start to Thanksgiving 2016 and I’m thankful for today…Wilson’s home and we’re looking forward to a fun celebration with friends later this afternoon.

So before things ramp up around here.  I just want to say…Thank you friends!  Thank you for your kindnesses and encouragement.  Thank you for your prayers and support.  Thank you for expressing your love creatively and for being the hands and feet of Christ in the life of a little half heart and his appreciative family.  🙂  We are rich!

Here’s a little glimpse into this weeks riches…

img_4469

Teacher Tracy speaking Rudy’s love language with the new incentive chart she made him at school.

img_4474

A quick visit from Nurse Sara and Kayley was a perfect start to Thanksgiving break!…

img_4470

…as was a trip to Kyle’s Kitchen with Kathy and Carter!

img_4464

Oh yeah, we’ve made a few stops at K’sK this past week…

img_4506

The latest being last night!

img_4513

Honestly, we’re out of control!

15202687_10154400230114079_1527368992225543459_n

But the highlight of yesterday was, by far, the SBRM Thanksgiving feast! An afternoon of yummy food, great music and special guests & volunteers!!! There was a sweet spirit of celebration among us all and Rudy was in heaven…(photo credit Dale Weber)

img_4489

Serenading Daphanie with big brothers!

img_4490

Insisting Wilson’s shakers were binoculars!

img_4497

Joining in on the act!

15230730_10154400201009079_1943133121149509671_n

The Geyling Brother Trio!

img_4494

Finding his groove with buddy Ric!

img_4501

Chillin’ some more with Ric and meeting new friends!

14962621_10154400196089079_8765986981942977029_n

(photo credit Dale Weber)

Happy Thanksgiving to you and yours dear ones!  May today be a reminder of how much you are loved and appreciated!!

Super Rudy and His Sidekick

November 2, 2016

img_3939

Halloween included a school sing and costume parade for Rudy, a day off from school for Max and Olivia, the traditional chili, rice and cornbread dinner with friends and a phone call from Wilson!  It was a full, fun day for sure.

img_3921

Rudy gettin’ ready…to stand while his schoolmates sing! The fact that he stood on the stage is progress!!

img_3927

Rudy and his helpful sidekick at the school costume parade!

img_3931

Super Rudy then had to fly by the school office to wish Miss Jill a HAPPY BIRTHDAY!

img_3939

‘Really can’t get enough of these two!

img_3909-1

With Halloween comes beanie wearing weather!!!  Yay!!!

We’re excited to host the graduates of the Santa Barbara Rescue Mission recovery program this week before Saturday’s graduation ceremony!  Max and Rolf have a college visit later in the week and Max and Liv have the homecoming dance on Saturday night as well!  WOW, Welcome November!!