Happy Belated Easter!

Spring is definitely in full swing around here…Wilson’s birthday is now a distant memory, the sorrow of Holy Week is fading, the great joy of Easter is still fresh in our hearts and Mother’s Day is just around the corner! We had a fun, full Easter celebration yesterday and hope you did too. 🙂 In addition to all the familiar events the spring season holds for our family every year, Rudy was invited by one of his La Patera classmates to a fun birthday party this past weekend…a party that included a bounce house…a new favorite to add to Rudy’s top 10 list!! Ha Ha He had a blast and was clearly pleased to hang out with school friends outside of school. It was fun watching him have so much fun. 🙂

We saw Rudy’s cardiologist last week. The routine appointment didn’t hold any surprises…there is no change in Rudy’s heart function. Dr. Harake feels like there isn’t much need to schedule a heart cath at this time so it looks like we may have a procedure-free summer…which would be great.

The topic of our discussion this visit was the risks we face as we wait. Since the Glenn (the second in a series of heart surgeries to reroute the blood’s circulation) is likely no longer an option and the possibility of a heart transplant is still to be determined, we are forced to wait patiently. What are we waiting for? For the risk of NOT doing something to become greater than the risk of doing something. As long as Rudy continues to grow and is happy (dare I say “thriving”), there is little reason to move forward in treatment. It has taken me a long time to be content with this internally…although I’ve been patient and have trusted Rudy’s doctors every step of the way, I have approached each check-in with the SB and LA cardiologists with great anticipation of “the next step”…wanting something tangible…a date in the calendar…an action step (emphasis on action). This need for a plan is becoming less urgent…I still get a little antsy around check-ins but mostly these appointments sneak up on me and I don’t have big expectations going into them (a good thing). So, as we wait, there are two main things we are looking for…signs of heart failure (which would put us on a faster track toward determining Rudy’s eligibility for a heart transplant) and signs that Rudy is outgrowing his shunt (which was the topic of discussion with Dr. Harake last week).

What is currently keeping Rudy alive is a tiny 5mm tube (called a Sano Shunt) that was placed by Dr. Brian when Rudy was 5 days old. In Hypoplastic Left Heart Syndrome patients, the most urgent problem is that the heart is unable to pump blood to the body. The goal of Rudy’s first heart surgery (the Norwood) was to connect his single ventricle to his body’s circulatory system disrupting blood flow to his lungs and so an alternative path needed to be created to supply blood his lungs. The Sano Shunt allowed (and continues to allow) for this pulmonary blood flow. The shunt was really only intended to be used for a few months until the Glenn procedure but it continues to serve Rudy well 5 1/2+ years later!!! Rudy had 2 stents placed in his shunt back in 2012 to open it up as it had decreased to about half of it’s original size over time but other than that, Rudy’s original shunt has gone untouched. Although we have spent a good bit of time thinking about and planning for the possibility of Rudy’s heart failing, what will likely happen first is that he will outgrow his Sano shunt. We haven’t talked to Rudy’s surgeon (Dr. Brian) in a long time but since nothing has changed in Rudy’s status, the expected course of action would be to replace the shunt when the time comes. I’m not sure how surprising it is to the medical community that the Sano has lasted as long as it has in Rudy’s case but it sure seems like we’re getting our money’s worth and then some…thanks to Dr. Shunji Sano’s work, Dr. Brian Reemtsen’s skills and God’s sustaining power in it all! 🙂 We are grateful that Rudy’s body continues to thrive with such a narrow path of blood flow centered in a very small fraction of his body…simply AMAZING!!!

Speaking of “amazing”, here are some amazing moments from the past couple of weeks…

Happy 17th Birthday to Wilson! April 9, 2014

Rudy's first experience in the computer lab at school! Nurse Sara texted me this pic with the caption "Rudy's dream day at school...a room full of computers". :) LOVE it!! — Rudy’s first experience in the computer lab at school! Nurse Sara texted me this pic with the caption “Rudy’s dream day at school…a room full of computers”. 🙂 LOVE it!!

Easter Feast at the Rescue Mission...playing and singing for the homeless guests in the courtyard as they waited...Max and I loved having Olivia (a student from Westmont) join us! — Easter Feast at the Rescue Mission…playing and singing for the homeless guests in the courtyard as they waited…Max and I loved having Olivia (a student from Westmont) join us!

Our Olivia greeting guests with a sweet treat!

Rudy enjoying the bounce house at a classmate's bday party... — Rudy enjoying the bounce house at a classmate’s bday party…

...and the friends IN the bounce house!!!! Yay friends! — …and the friends IN the bounce house!!!! Yay friends!

Easter 2014..."Show us your eggs Rudy!!!" — Church Easter Egg Hunt 2014…”Show us your eggs Rudy!!!”

The Easter bunny brought Rudy new swim attire! The black eye? Not sure where that came from...it was either from all the bounce house fun from the day before OR from wrestling with big brothers! Ha Ha — The Easter bunny brought Rudy new swim attire! The black eye? Not so sure where that came from…it was either from all the bounce house fun the day before OR from wrestling with big brothers! Ha Ha

We’ll certainly keep you posted of any changes but for now we anticipate a summer full of wet fun as Rudy sprouts some fins and learns to swim!!!!

Now What?

I mentioned in my last post that I was needing a little time to decompress and process after sharing at Westmont’s chapel a couple of weeks ago…I’m not sure that has happened yet. The experience has stirred my heart and I’m still feeling a little vulnerable and raw…weepy and droopy. Not that it was a negative experience…no, it was awesome and I’m glad I did it! And I’m really appreciating the exciting feedback I’m getting from folks who’ve had time to watch the video…It’s just that I had everything (all the emotions, hopes, fears, reality checks of the past several years) neatly filed away in my heart, then I rummaged through it all to prepare for my talk and now I’m left with a messy heart that needs to be organized again! Ha Ha Can anyone say “Type A”!!! I crave “neat and tidy” but life is NEVER neat and tidy…even when it’s good! This is an unfortunate dilemma.

After spending a good bit of time reflecting on the past, I find myself saying “Now what?”. My heart is full AND terrified all at the same time and I’m not quite sure what to do with it. God, what do You have for us?…I ask this question both literally and figuratively. I say I want to know but, then again, it’s “hindsight” that gives us “perfect vision” not “foresight” so I need to find the energy to capture my thoughts, refocus and return to taking life ONE DAY AT A TIME. It’s a lesson in perseverance I guess.

In the midst of all this and the rest of the kids’ spring break, Rolf finished the big indoor project of rebuilding the wall of cabinets in our hallway. This forced me to empty the cabinets of ALL their contents and reorganize (hmmmm, I see a pattern here)…a BIG project that was WAY overdue. This included the dreaded photo album cabinet that has been neglected the past 6 six years…it literally had loose pictures stuffed in it to the point of spilling out every time we opened the cabinet door. Of course, the project took 10 times longer than it should have because I got distracted by all these fantastic treasures of the past and one treasure in particular stood out as particularly significant in the emotional place I’m in right now. It’s a card that one of Rudy’s doctors gave me and Rolf the day Rudy was discharged from the hospital…in part, it reads: “It is usually the docs that get, not give, the card; but for you everything is different! The extreme patience that you have shown over the past 6 months has been a lesson for me. When times get tough, a person’s true colors emerge. You two have been put to the ultimate test with Rudy and you have shown me what it really means to be a ‘Christian’ (and that’s coming from a Jew!). You are both genuinely good people. From the prenatal diagnosis to the Norwood to the chylothorax to the other chylothorax to the trach through failed extubations….you have been nothing but kind, patient and understanding to everyone around you. With every curve ball and set back, you stayed calm, positive and hopeful. …I will always pull for Rudy’s health and I am so thrilled that you are getting to take him home today.” I feel like I should frame it and put it up on the wall as a constant reminder that this is the result of taking things ONE DAY AT A TIME. If we had been told what to expect the day Rudy was born, I would have said “this isn’t survivable (for Rudy or us)” and crumbled but by taking that early journey one day, one hour, sometimes one breath at a time, it added up to 6+ months in the hospital, a celebrated homecoming and what has become 5 years at home together…as a family of 6! Amazing….truly!! I am humbled!!

Okay, so the other thing making me weepy today is that it’s Wilson’s 17th Birthday! He changed our world when he turned Rolf’s and my couple into a family…he marks the start of a pretty amazing chapter in my life and I LOVE that God entrusted him to us.

I gave Wilson a copy of the picture Greg Lawler took of him and Rudy at Westmont and I noticed it on his desk with a quote written on the back of it…”Life is a precious thing. You must not forget the lives around you that you can touch and move in astounding ways.” I asked him whose quote that was and he said “mine, I wrote it”. Out of the mouths of babes…I need this reminder plastered on my wall too!!

Here’s some fun from the last two weeks…

Olivia started her first official job…dog walking! She’s LOVING it and LOVES her “clients”!!! Her persistence in the quest to get a dog of her own will pay off…she’ll wear this mama down one of these days!

We absolutely LOVED having our god-daughter, Maya (on the right), drop in with two of her friends and teammates Fiona and Sarah on their way down south for spring break…Stanford swimmers not only excel at swimming but are SUPER SWEET too! 🙂

Our big kids headed south, too, on a little train excursion…they boarded the Amtrak Surfliner for an overnighter in LA – a highlight of their spring break!

A small rain storm produced this beautiful rainbow on our hills last week…we desperately need more rain but who can be worried when there’s such a pretty rainbow in view?

Rolf’s patience in his recovery after knee surgery is sure paying off now!! He got back on the water after being in dry dock for 9 months!!! It has been a long road to recovery but I’m proud of him…he remained committed to PT more than once a week and the daily exercises he was given to do! It isn’t over yet but he’s on his way to a fun, waterlogged summer!! 🙂 Yay Rolf!

Now that Spring Break is over the lazy days of summer are within view. The school year is beginning to wind down and there is much to be thankful for (for all the kids have experienced and accomplished this year)…okay summer, we’re headed your way…one step at a time!

Spring Has Sprung!

I know it doesn’t feel like it in many parts of the country but spring has definitely sprung in Goleta! After several weeks of summer-like temps, it’s actually cooled down a bit this week feeling more like spring. Rolf’s roses are in full bloom and we might see a little rain today. The kids’ break from school has been consumed with house projects so far, but we have some fun planned for the latter half of the week. 🙂

Spring is going to have special meaning this year as Livy approaches her 6th grade promotion and our family says goodbye to the elementary school experience as we have known it. We’re enjoying and taking special note of all the fun La Patera traditions that’ll we’ll miss when Olivia moves on to Jr High. The annual jog-a-thon is definitely one of our favorites! 🙂

Olivia's strong showing at La Patera's annual jog-a-thon! — Olivia’s strong showing at La Patera’s annual jog-a-thon!

Rudy and I went to cheer the kids on at the jog-a-thon and ran into Miss Grant’s 5th grade class. We’re excited to be adding another day to Rudy’s La Patera schedule next week and discovered that Miss Grant’s students are big buddies to Rudy’s Kindergarten classmates which means Rudy will get to participate in big buddy activities with them. When I asked the kids who might want to be Rudy’s big buddy, this is the response I got! So sweet!! Yay!

Miss Grant's 5th grade class ROCKS! — Miss Grant’s 5th grade class ROCKS!

…a little more birthday fun with Max as we ring in a new season.

...a belated 15th Bday celebration with Max and friends! — …a belated 15th Bday celebration with Max and friends!

A special milestone passed for me this week too. I was invited to speak at Westmont College’s chapel service on Monday and was both blessed and challenged by the experience. Speaking in front of a gymnasium packed with college students is definitely out of my comfort zone and I struggled to discern what to share and how to share it but the experience was good for me…a good process to push through. Greg Lawler came and, sweetly, took pictures for us…as always, I’m sure glad he did because he captured some precious moments I’d sure like to remember…

…a little pre-chapel briefing with Ben Patterson (and Max on the Gameboy he unearthed during his room purge the day before! Love it!!!) — …a little pre-chapel briefing with Ben Patterson (and Max on the ol’school Gameboy he unearthed during his room purge the day before! Love it!!!)

Rudy getting the "wiggles" out with Wilson and Olivia. — Rudy getting the “wiggles” out with Wilson and Olivia.

Rolf titled this one "Big bro loves Lil' bro"…definitely! #puresweetness — Rolf titled this one “Big bro loves Lil’ bro”…definitely! #puresweetness

...a handful of friends came and shared in the morning with our family…so grateful! — …a handful of friends came and shared in the morning with our family…so grateful!

A video and audio recording of my presentation are posted in the chapel archives on Westmont’s website. If you’re interested in watching the video click here.

When we got home from Westmont on Monday, I asked Wilson what he thought and he said, “Is Rudy going to die?” to which I responded “REALLY?”. And he said “I just don’t think about Rudy being so close to death.” “Well”, I said, “that’s the challenge we face as we approach life…rather than dwelling on potentially tragic realities, we choose to live life one day at a time and, hopefully, live it to the fullest. I believe, though, that God has longterm plans for Rudy’s life even though the odds may not be in his favor.” My approach to Rudy from day 1 has been to fully expect the best but prepare my heart for the worst. I don’t know if it’s the most emotionally sound approach to critical situations but it has taught me to not pull away from pain out of fear but to embrace it with the assurance that God is by my side…no matter the outcome. It’s interesting to me that even though the hours of preparation and the talk are over, I’m still processing as I’m feeling vulnerable and experiencing a bit of an emotional let down after the fact. Hmmmm, I’m left with lots to still ponder as I decompress from my “chapel speaker” experience…to be continued!

For now, though, it’s time to enjoy a little spring break! 🙂 Happy Spring Everybody!!

Packing It In!

Our family has always been known for packing in as much fun as is humanly possible…whether we’re the last to leave a party or staying at an amusement park from it’s opening until the absolute last minute before closing or not letting bedtimes on school nights cut visits with friends short . Although we’ve tried to learn to pace ourselves a bit more since Rudy was born, last weekend is proof that old habits die hard. Between hockey games, volleyball tournaments, Girl Scout cookie booths, jazz festivals and drum line competitions, the big kids have us all over the map…throw in a SBRM graduation and marathon and you’ve got yourself a “Geyling Weekend”!

It all started Friday after school with a 3-hr Girl Scout Cookie Booth in front of Vons and a race to the hockey rink afterwards for Max’s game…Wilson was off to a jazz festival in San Luis Obispo early Saturday morning and the rest of us headed to Olivia’s volleyball tournament. In the evening, we were blessed to celebrate the brave accomplishments of the 16 men and women who graduated the 12-month recovery program at the Rescue Mission later that day!

Santa Barbara Rescue Mission Graduation on Saturday.... — Santa Barbara Rescue Mission Graduation on Saturday….

On Sunday, we were up and at ’em bright and early to head down to L.A. Wilson ran 1/2 of the L.A. marathon with Team World Vision to raise money for clean water in Africa. It was his first 1/2 marathon and the experience was pretty thrilling for all of us. Wilson ended the run with a smile on his face which is a good sign. Thanks to “Find My IPhone”, the rest of us were able to track his location throughout the course and Rolf navigated L.A. traffic like we were in a scene from “Fast and Furious” to position ourselves along the route to cheer him on! So fun!

Here he comes! — LA Marathon on Sunday…Here comes Wilson!

Photo op during the LA Marathon! — Photo op during the marathon!

We took full advantage of being in L.A. to visit friends and hang out at one of our favorite beaches…in retrospect, we probably overdid it a bit but it sure was a gorgeous day with fun memory-making moments.

Wilson's 1st 1/2 marathon was a success...the younger sibs were great cheerleaders! — Wilson’s 1st 1/2 marathon was a success…the younger sibs were great cheerleaders!

Our big weekend culminated with a very special celebration on Monday…Max’s 15th Birthday! I say it every year but it’s hard to believe time is passing so quickly and that the kids were ever so small! We have alot to celebrate in Max…his passion and enthusiasm for life, his many and diverse interests, his talent and his heart. We were blessed by his arrival on March 10, 1999 and continue to be blessed by him today. 🙂

Celebrating Max on Monday...aww, the big boys were once so little! — Celebrating Max on Monday…aww, the big boys were once so little!

By Tuesday, it was clear that we were all in need of a little rest…Rudy took his on the floor in the middle of the laundry piles…of course Wilson couldn’t resist messing with him. Ha ha

...a little zonked after such a long weekend! — …a little zonked after such a long weekend!

And so we’re on to the next weekend of activities…the countdown to Spring Break is on…just one more school week! I’m ready!

Wish Night

We relived the joy of Rudy’s Wish Trip a bit on Friday night when we shared about it at the annual Make-a-Wish (Tri-Counties) fundraiser – Wish Night 2014! The big kids weren’t completely thrilled with having to drive down to Westlake Village (1/2 way to Los Angeles) on a Friday afternoon (in crazy Friday traffic AND stormy conditions) but when all was said and done, they were all glad we went. Max helped Rudy seat guests at the start of the event with a few other wish kids, Olivia kept a close eye on our silent auction bids and Wilson helped keep Rudy entertained at our table.

We were inspired by the “Fund-a-Wish” auction that raised enough money to fund 12 tri-counties wishes this year…3 more than last year! Super exciting. It was a great pleasure to share Rudy’s story and our gratitude to the staff and supporters of our local Make-a-Wish chapter. We sure wish this year’s recipients great joy and strength as their wishes are granted. Enjoy the fun!

Rudy is showing a little more interest in food….

…but needs to work some more on table manners! (That darn nasal cannula.)

After the event, Jedi Master Wilson gave young Padawan Rudy a lesson on practical uses of “the force”…

One last "red carpet" shot on our way out the door…:) — One last “red carpet” shot on our way out the door…:)

(Here’s the text of what I shared:

Our youngest son Rudy was born October 1, 2008 with a serious heart defect called Hypoplastic Left Heart Syndrome. He was born with half a heart and because of complications and setbacks after his first heart surgery, Rudy was hospitalized for 7 months after his birth. Due to compromises with his lungs, Rudy is not a candidate for any further surgical treatment or a heart transplant at this time.

Knowing Rudy’s prognosis is uncertain and likely poor, we first talked with the staff at MaW-TC shortly after Rudy’s third birthday. Although Rudy was unable to articulate his wish, my husband and I knew that Rudy’s heart’s desire would be to share a memorable experience with his big siblings (who he absolutely adores) and yet for Rolf and I, it was important to do so in an environment that would be safe for Rudy with his many medical needs.

We found the perfect place in GIVE KIDS THE WORLD (where “happiness inspires hope”). GKTW is a storybook village resort outside Orlando, FL built specifically for kids with life threatening illnesses and is a Wish Trip destination for 1000s of families each year.

GKTW is a magical place where Christmas is celebrated every Thursday, Ice cream is served for breakfast, lunch and dinner and where the mayor of the village is a giant 7 foot rabbit who will come tuck you in at night in your private villa. It’s also a place that has access to medical personnel as needed and easily accommodates children with medical devices and wheelchairs.

Months of planning went into Rudy’s wish trip to GKTW and what resulted was an experience in January 2013 that was certainly more than any of us could have wished for…all the details the Make-a-Wish staff planned unfolded smoothly, our family remained healthy and safe and, most of all, we managed to pace ourselves which all resulted in a precious, stress-free time to experience new things together as a family and laugh!

Rolf and I knew this would be a formative experience for our big kids as much as it would be for Rudy. We wanted Wilson (…17), Max (…15) and Olivia (…11) to understand the significance of this trip while at the same time feel the freedom to be carefree and simply enjoy. They did great! They shared in Rudy’s joy and delighted in his new discoveries and that blessed us. There were many activities where Rolf and I were unintentionally pushed out of the way and forced to watch from the sidelines. Ha Ha pastedGraphic.pdf Rudy was the center of their world for that week and that’s exactly where he wanted to be.

I wish there were words that could adequately describe the range of emotions Rolf and I encountered as “Wish Parents”. The trip was one of both beauty and pain. Much like our life with Rudy from day to day, joy and heartache coexisted at Give Kids The World. There was just no escaping the reason why we were on this trip . Multiple times a day, I was brought to tears overwhelmed by the kindness of the volunteers who were there to serve us while at the same time in disbelief over the fact that our family was even on a Wish Trip.

Unlike other Wish Trip experiences, ours was shared with “Wish Families” from all over the world and it was sobering to see so many children in a battle for life. It felt like we were walking on holy ground among people who regardless of their religious beliefs were on a faith journey just like us…forced to face immortality and the very real threat of losing a child. There was no “talking shop” or comparing treatment notes with the other parents. It felt like no one wanted to intrude on others’ space and so most kept a friendly distance and yet it was comforting to feel like we weren’t alone.

At GKTW, an impressive army of volunteers make all the magic happen…they serve the meals, plan and facilitate the daily activities and help meet the unique needs of each family…they are amazing. The volunteers we encountered ooooed and ahhhhed over how cute Rudy and the big kids were, engaged the big kids in conversation about their lives and asked very few questions about Rudy’s condition. Although I don’t mind answering questions about Rudy, it was surprisingly refreshing to not have to. That and the fact that we could forget about doctor appointments for a whole week had a positive impact on our family. We have adjusted to our “new normal” since Rudy was born…so much so that I’ve almost forgotten what it’s like to live outside the confines of our structured, routine life at home but the kids got to enjoy “vacation mom and dad” for a few days and the experience truly refreshed our souls!

The complicated logistics of traveling long distances with Rudy make it nearly impossible for our family to do so on our own. We could not have taken a trip like this without the support of Make-a-Wish. We are grateful to Linda at Make-a-Wish Tri-Counties, our wish-granter Anne, the staff and volunteers at Give Kids The World and the countless others who helped make this trip possible for our family. It really is an experience we will cherish for our lifetime and we are truly grateful. Thank you so much!)

Miscellaneous Fun!

Rolf made it home safely from being with his family in Alabama late on Saturday…since then we’ve been trying to settle back into the regular routine but it has been a weird week…it’s busy, lots to catch up on, we’re all tired and life feels scattered…but, there has been some random fun too:

Came home from dropping Olivia off at Volleyball practice to find the boys wrestling in the hallway…Boys!

Rudy got to celebrate ANOTHER 100 days of school at his district special ed school…more 100 day fun! 2-19-14

Holter Monitor test 2-20-14 – no word yet on the results.

We’re waiting to hear back from Dr. Harake about Rudy’s Holter Monitor test last week…I don’t expect any BAD news but I am hoping we were able to get some good data. Normally the sticky probes stick like cement but we had an unusually warm day on the 20th causing Rudy to sweat which then caused the probes to peel off at different times throughout the 24 hour test period. I tried to stick them back on to finish the test but we’ll have to see if it worked. I’ve never had that happen before. 🙂

I drove Wilson up to Pismo Beach on Sunday for a school jazz band gig at the Veteran's Hall for an audience filled with vets from an era that loved to jitterbug. The kids' renditions of "In The Mood" and "American Patrol" brought the house down. I wanted to jitterbug so bad…I looked around the room to see if one of the old timers might dance with me. Then, as an early bday present, Wilson came down offstage to dance during one of the songs in the set he doesn't play! SO FUN!!! He was a good egg to dance in front of his classmates…BEST BIRTHDAY GIFT EVER! — I drove Wilson up to Pismo Beach on Sunday for a school jazz band gig at the Veteran’s Hall for an audience filled with vets from an era that loved to jitterbug. The kids’ renditions of “In The Mood” and “American Patrol” brought the house down. I wanted to jitterbug so bad…I looked around the room to see if one of the old timers would dance with me. Then, as an early bday present, Wilson came down offstage to dance with me during one of the songs in the set where he doesn’t play! SO FUN!!! He was a good egg to dance with his mom in front of his classmates…BEST BIRTHDAY GIFT EVER! 2-23-14

Oh yeah, btw, it’s my birthday today. 48 and counting! Grateful.

Mama's Bday dinner at The Nugget! YUM — Mama’s Bday dinner at The Nugget! YUM

Livy made me a homemade carrot cake from scratch with a little help from her dad…Thanks, T, for the recipe! :) YUM — Livy made me a homemade carrot cake from scratch with a little help from her dad…Thanks, T, for the recipe! 🙂 YUM

The family is heading to an annual Make-a-Wish fundraising event tomorrow to share about Rudy’s Wish Trip to Give Kids The World…we are honored to share our experience with the Make-a-Wish Foundation and are looking forward to a special evening out together.

Speaking of Give Kids the World….we shared a few years ago about a Rudy’s Beat friend in her own battle for survival…click here and scroll down to the end of the post. Megan and her family got to visit Give Kids The World last week and they found Rudy’s paving stone that was placed on the Avenue of Angels after our visit last year…right in front of the Castle of Miracles!!! So cool…Thank you Megan!!

Rudy's stone location at Give Kids The World! — Rudy’s stone location at Give Kids The World!

Mourning Opa…

We are grieving the loss of Rolf’s dad today. After a long battle with Parkinsons, Franz had a stroke 10 days ago and passed away yesterday (Monday), February 17, 2014…he was 87. I am grateful that Rolf was able to fly out Sunday and arrive in Auburn in time to be with his family and spend time at his dad’s side before he passed. Franz will be missed. He was a good man who cared for his family, was passionate about his life’s work as an engineer, made significant professional contributions in his field and modeled commitment throughout his life to his wife of 52 years, his work, his four children and later to his 15 grandchildren.

I loved my father-in-law and appreciated his presence in my life. I’m grateful for the ways he welcomed me into his family and demonstrated his care and concern for my family. Franz was a man of contradictions which is what made him so interesting to me…at first glance, I don’t think anyone would have described him as a huge risk-taker…he was conservative with his resources, careful in his choices and methodical in his approach to life and yet he made some pretty bold moves in his life that included leaving his family in China and Europe as a young college student to establish a new life in America – pretty risky if you ask me!

Franz could also be described as extremely intelligent – he had an engineer’s mind that could easily digest all things technical. If you asked him a simple question, more often than not his answer would be filled with references to physics and other branches of science you didn’t even know applied! 🙂 Opa may have had the mind of an engineer but he also had the hand of an artist and he delighted us in his later years with his renderings of familiar places and faces (Rolf’s roses were a favorite subject during visits to Goleta).

Opa's sketch of Max in 2001. — Opa’s sketch of Max in 2001.

I knew Franz to be a man of many words…if you got him talking about his fascinating family history, he could spin a detailed yarn for hours at the dinner table…and yet, I also knew him to be a man of few words…he chose his words carefully and was thoughtful (maybe even sparing) in his affirmation…which made notes like this one even more meaningful:

Losing Opa makes me miss my Dad a little more today too. I am blessed to have had them both in my life.

Schlaf gut Opa! Schlaf in himmlischer Ruh…Liebe, Trish

“Merciful Jesus, Lamb of God, Grant him rest…everlasting rest.”

(an abbreviated translation of “Pie Jesu”…my version below recorded for the service)

Happy Valentine’s Day 2014

Rudy got to celebrate Valentines with BOTH of his classroom friends but I only got a picture with one…what a fun, full day it was! — Rudy got to celebrate Valentines with BOTH of his classrooms but I only got a picture with one…what a fun, full day it was!

Great minds think alike…Rudy and his nurse, Sara, brought the exact same Valentine's to share with the class!!! ha ha — Great minds think alike…Rudy and his nurse, Sara, brought the exact same Valentine’s to share with the class!!! ha ha

It wouldn’t be Valentine’s without our traditional greeting…Rudy joined in for the first time and performed like a pro! We dedicate this 2014 version to Opa and Oma! Feel better soon Opa…we love you both!

(Click here for 2011 version and 2012 version)

Happy Valentine’s dear Ones ❤

Congenital Heart Defect Awareness Week

We’re right in the middle of CHD Awareness Week (February 7-14) … I think it’s sweet how it leads up to the biggest HEART day of the year!!! Rudy, Olivia and I enjoyed kicking off the week with a little mini-reunion that included Logan’s mom, Rayme, Nurse Joyce (who kept a watchful eye over Rudy and Logan when they were in the hospital together the fall of 2008) and Jeni Busta – CHD survivor (who, by the way, was a patient of Joyce’s 28 years ago!!!). It’s always an encouragement to be with these friends and I’m grateful for our special bond.

Rudy was all smiles with Jeni, Joyce and Rayme! — Rudy was all smiles on Feb. 7th with Jeni, Joyce and Rayme!

Not that it has anything to do with CHD Awareness Week but Rudy got to see Max's JV Hockey Team win the league championship on Saturday in a double-overtime, nail-biting finish!! — Not that it has anything to do with CHD Awareness Week but Rudy got to see Max’s JV Hockey Team win the league championship on Saturday in a double-overtime, nail-biting finish!! Very exciting!

Rudy's "official" Rifton walker doesn't fit through the door frames in our house so we got him a "grown up" walker that he can easily navigate inside!! He's quick to pull up and go, go, go. There may be a few more nicks in our baseboards before he masters it but I kinda like the "distressed" look in woodwork. Ha Ha — Rudy’s “official” Rifton walker doesn’t fit through the door frames in our house so we got him a “grown up” walker that he can easily navigate inside!! He’s quick to pull up and go, go, go. There may be a few more nicks in our baseboards before he masters it but I kinda like the “distressed” look in woodwork anyway. Ha Ha

It’s kind of a fun week…lots of exciting Olympic coverage to watch…a 4-day weekend to look forward to….AND Valentine’s Day is just around the corner!!! Happy Heart Week dear friends! ‘Wishing you love and happiness…

Cardiology or Meteorology?

This sure has been a crazy winter…polar vortexes, record high temps and drought in southern California, record low temps and crazy amounts of snow everywhere else…with all the talk of high and low pressure systems on the daily weather report in recent weeks, my ears perked up today when Dr. Harake started talking about high and low pressure systems in relation to Rudy’s heart! Wait! What branch of science are we talking about?

We had a routine check-in with Dr. Harake and talked a good bit about our consult with Dr. Alejos at the pediatric cardiomyopathy/transplant clinic at UCLA last month. Although Dr. Harake is in regular communication with the team down at UCLA, it’s important for us to be in communication with them as well and Dr. Harake encourages it…he just wants to make sure we’re all on the same page and not missing something. It’s pretty clear to us what Rudy’s options (or lack of options) are at this point and we agree with Dr. Harake that the best course of action is the one with the least risk (i.e. when the risk of NOT doing something becomes greater than the risk of doing something, we move forward…until then we stay put).

With that said, our discussion today centered on where Rudy is ultimately headed. Dr. Harake likened what is going on in Rudy’s heart to an accelerated aging process…it’s working hard and, as a result, it’s aging fast. Rudy’s little right side of his heart was intended to pump blood to his lungs – a LOW PRESSURE SYSTEM – but instead we’re asking it to pump blood right now to his lungs AND his body which is a HIGH PRESSURE SYSTEM! The extra pressure is and will continue to take it’s toll on the rest of Rudy’s body as well as his heart. His other major organs are, like his heart, enlarged and will be problematic over time…an indication of congestive heart failure. Rudy’s heart rate was a little low today so Dr. Harake ordered another Holter monitor test…the last Holter we did was over a year ago so it makes sense to do it again anyway. We’ll have the small monitor placed on Feb. 18th for the 24 hour test so he can wear it to school and therapy that day…it will be great to get data during his most active times. I suspect all will check out okay. If the low heart rate and enlarged organs were, indeed, an indication of heart failure, we expect his demeanor and stamina would change as well which certainly isn’t the case so it feels like we’re really in season of monitoring and establishing baseline data with all these tests. Dr. Harake is going to talk with Dr. Dan and discuss whether or not to get a heart cath on the calendar. Other than that, the plan is to lay low… to wait and watch. Thanks for waiting and watching with us!

Warm hugs and love to all our friends and family buried in today’s snowfall…stay warm!!