It sure is fun to watch Rudy’s personality emerge more and more as he becomes more mobile and more verbal.  He’s so happy and goofy.  He has a great sense of humor, is inquisitive and has an astute sense of things going on around him.  When he hears a loud noise coming from the kitchen or picks up on a change in my intonation, he’s quick to ask “What happen Mom?”.  He has such a big heart and is beginning to express concern for others with a pat on the back and a “How’s it goin’?”.  I was thrilled this week when Rudy crawled over to the chair I was sitting in, pulled himself up and clearly said “I wuv you” without being prompted.  Music to my ears, for sure!  These are qualities we hope for and try to nurture in all our kids and it’s thrilling to see them freely flow from Rudy now too.

Ironically, as Rudy’s figurative heart enlarges so is his actual heart.  We touched base with Dr. Harake last week and Rudy’s heart is continuing to get bigger…it’s a slow trajectory but the development of Rudy’s overworked half-a-heart is definitely unfolding as predicted.  In addition to the notable change in Rudy’s heart size, Dr. Harake’s pulse oximeter (which normally reads Rudy’s O2 sats in the low 80s) couldn’t get a reading higher than 71%.  Rudy’s low O2 sats could be attributed to the increase in his physical activity but it’s something to keep an eye on for sure as the severity of Rudy’s heart failure would be assessed by a number of variables including chronic low O2 sats.  After the echocardiogram, Dr. Harake also “downgraded” the tricuspid valve leakage from mild/moderate to moderate…another variable in the big picture.  The tricuspid valve is located between the right atrium and right ventricle and it serves to prevent back flow of blood into the right atrium.

As Rudy’s compromised heart compensates, the right ventricle enlarges so that it can pump harder and this causes the tricuspid opening to become stretched out and floppy…this causes the valve to “leak” blood back into the atrium which creates unnatural pressure and causes the ventricle to work harder and get bigger…etc, etc,etc!  A vicious cycle!

One big “heart failure” indicator that we are NOT seeing yet is lethargy.  Although we’re seeing an increase in cyanosis, we’re not seeing a drastic change in Rudy’s energy level which is why I’m not panicking.  Dr. Harake is going to discuss the latest information with the UCLA team and decide whether or not to get a heart cath on the calendar.  Although I’d like to spare Rudy the discomfort of a heart cath, an updated look at all the things they can measure in a cath would be comforting to me…we’ll see.  Rudy’s next visit to the heart clinic at UCLA is July 3rd.  I guess it’s fair to say that we’re “on alert” but also very much aware that the road to full on heart failure could be a long one and so patience and discernment are key as we continue to monitor the situation from day to day.

As always, we sure appreciate your prayers!!

Our first week of summer vacation was full and fun and now we’re settling into Rudy’s summer school schedule.  Wilson is enjoying his first “real” job at our local car wash, Olivia is keeping busy with her dog walking job and craft projects, Max is looking forward to guitar camp coming up in a couple of weeks and all three big kids are headed to Kansas later this week to visit Gma Jo which will be a fun adventure!  Life marches on and we’re taking the time to cherish it all.  🙂  We hope your summer is a fun and happy one too!!  🙂

Folks around here are shocked and deeply saddened in the aftermath of last Friday night’s shooting rampage that took place nearby in Isla Vista.  Although our family doesn’t  know anyone who was directly affected, we know quite a few people who are involved in helping to “pick up the pieces” and bring healing to the community at large…friends who work in the UCSB counseling office, UCSB employees, Sheriff Bill Brown, students…and our hearts are heavy for the students & faculty left to process it all and the families who are left with such deep, deep loss.  We’re just a quick 5 minute drive from where the shootings occurred…a place we visit often to go to our favorite taqueria “Freebirds”.  On one hand, Isla Vista can feel like another world away as it is densely populated with UCSB and SB City College students and is known for crazy college parties but on the other hand it’s quite startling to stop and realize how integrated we are to the UCSB community…in addition to our frequent runs to Freebirds, one of our favorite stretches of beach (Campus Point) is in Isla Vista, Olivia plays Volleyball at UCSB and is coached by students, Rudy will go to summer school at Isla Vista elementary, the Alpha Phis (the sorority initially targeted by the shooter) volunteer at the Rescue Mission a couple of times a month, (etc, etc) and Liv was just on campus for a field trip Friday morning…it hits close to home literally and figuratively.

I have to admit, too, that I feel a heightened sense of  (I’m not sure this is going to come out right) discouragement over these senseless killings.  I really don’t mean to make this about me but I find it a little strange that my first emotional response is discouragement rather than feeling sad or even angry.   I really think that since our family’s time, energy, resources and focus 24/7 are spent trying to preserve a life, it makes events like what happened in Isla Vista seem even more tragic to me.  It’s a very complicated situation, I know, with so many variables and I don’t want to over-simplify it by any means…it’s just how I’m feeling today….disappointed and burdened.

Ironically, as all of this  unfolded in Isla Vista, our big boys were in San Diego for a church youth conference at Pt. Loma University.  They spent 4 days with 1500 other teens competing in a variety of fun events, worshipping God together, encouraging one another and having a blast.  Wilson entered a preaching competition, Max always the sports enthusiast played hard at the sporting events and they both competed in a talent competition together  – click here or here.  (FUN!)  So, as I had one eye on the local news coverage, my other eye (albeit teary eye) caught glimpses of what the boys and their friends were up to down south on FB…stark contrasting images indeed.   It made me pray for those 1500 teens even harder…that the TRUTHS of life would root in their hearts, that they would know they are deeply LOVED no matter their circumstances and that they would CHERISH life – their own as well as purposing to make life better for others…

It feels a little weird to be plugging away at the daily schedule but there has been so much to fill our week this week…studying for finals, the DPHS Talent Show (Max ROCKED it), preparation for LP’s 6th grade promotion ceremony next week & Rudy’s graduation from Learning Tree as well as the big 6th grade dance TOMORROW!  ‘So grateful for it all…

I got a sweet glimpse into Olivia’s mind through poems she wrote this year in her poem journal for school…my favorites are her preposition poem which describes the day Rudy came home from the hospital and the last stanza of her “I am from…” poem.  A great reminder that “it’s all good”

Preposition Poem:  My Baby Brother

(By Olivia Geyling)

“Inside the house

Until I see the car

Through the rain I run

By the bushes

Past the tree

To the car

In my arms

After a year

Beneath blankets

At his home

Below my eyes are tears

With my baby brother.”

Praying for peace and healing for our community tonight.

It’s only been a couple of weeks since our last post but, boy, the full spring calendar continues around here and we’ve packed in quite a bit …Mother’s Day, a trip to the pediatric dental clinic at UCLA, a Girl Scout camping trip, Rudy’s first “beach day” and Rolf’s birthday!!!  With just 12 school days left of school, the boys’ finals and Livy’s 6th grade promotion are just around the corner.  It’s an exciting time, for sure.

With so much going on in the life of our family, it has been nice to have a little respite from major medical “to dos”….we’ve remained current in all of Rudy’s routine appointments but there hasn’t been any medication changes or follow up treatments to schedule and it feels like a break.

Rolf and I took Rudy down for his first teeth cleaning at the dental clinic at UCLA and we were very encouraged by the appt…Rudy cooperated  and his oral health status continues to be good.  There is no sign of calculus (hardened plaque) at the base of his teeth and gums (which would be BAD) but the calculus that is on the surface of his teeth continues to provide a protective seal against decay (which is GOOD).  The dentist he saw this time confirmed what the dentist told us back in September during our first consultation and all of the information gathered by the dental clinic will be passed on to the docs at the heart clinic as it will be important in determining Rudy’s eligibility for a heart transplant down the road….just one of many variables in determining his eligibility but it’s definitely an important piece of the puzzle.  The tiny victories along the way are definitely encouraging.

Here’s a look at some of the other big events of the month…

I broke tradition and actually went camping this past weekend with Olivia’s Girl Scout troop…one last big hurrah before promotion.  It was a special time, for sure, with the girls…most of whom have been Girl Scouts together since Kindergarten!  Since we camped at El Cap just 10 minutes away from home, Rudy and Rolf joined us for our day at the beach and it was fun to share Rudy’s first REAL day at the beach with the girls.

We got home on Sunday just in time to celebrate Rolf’s birthday!  A perfect exclamation point to a fun weekend of many blessings.

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…

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!!!!

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!

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!

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!

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.

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.  🙂

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

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!