Archive for April, 2014

Happy Belated Easter!

April 21, 2014

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

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!

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!!!”

Rudy's stash!

Rudy’s stash!

Olivia's stash!

Olivia’s stash!

Happy Easter!

The Easter Bunny’s stash!  Happy Easter!

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?

April 9, 2014

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.

April 1997

April 1997

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!!

IMG_1674  Here’s some fun from the last two weeks…

IMG_1642

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!

IMG_1646

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!  🙂  IMG_1649

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!  IMG_1669

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 back out! copy

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!

First swim of the season!

First swim of the season!  (April 8th)

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!