I don’t consider myself a big risk taker.  I’ve never had a huge desire to go skydiving or cliff jumping,  I’m too cheap to gamble and I’m too practical to not “play it safe” in most areas of my life.  As a result, I was struck by a quick interaction I had with Dr. Dan after Rudy’s heart cath back in July that has left me pondering what it means to take risks in life.

You may recall that it was deemed necessary during Rudy’s last heart cath to attempt to place stents in Rudy’s aorta…a somewhat risky procedure as Drs. Dan and Harake needed to get the large stents to his aorta through the only open artery Rudy has left in his groin.  There was much discussion during pre-op about saving the femoral artery by pursuing surgical options to gain access to the aorta instead.  There was more discussion with Dr. Dan by phone from the cath lab as well as a consultation with Rudy’s heart surgeon during the procedure that resulted in a unanimous decision to go for it through the groin.  We were relieved when the procedure was over and very excited that it was successful.  While Rudy was getting settled in recovery, Dr. Dan met with us to discuss the details of the procedure and brief us on where things stood, etc.  We were all pretty giddy by the outcome and as we got up to leave and get back to Rudy I said “Congratulations Dr. Dan.  You did it!  Well done.”…without hesitation he said (something like/not a direct quote) “No, you’re the ones to be congratulated!  You were willing to take a big risk and you gave us your consent.”.

Risk-takers?  Us?  I guess it’s all in how you look at it because it sure didn’t feel like we were the ones taking a risk…it felt more like, for Rudy’s sake, we had no choice.  BIG leaps of faith sure don’t seem risky when you feel you don’t have any other options and, in looking back, there sure haven’t been many options in our journey with Rudy.  I’ve mentioned it before but at every critical crossroads (especially in those early months), we never really had options in treatment…the road was laid out for us one step at a time as Rudy’s body dictated the direction we journeyed and, when needed, we gave consent for treatment when the risk of not doing something became greater than the risk involved in the procedures themselves…pretty straight forward…harrowing but straight forward.

Believe me, I’d jump out of a plane, dive head first off a cliff or place a big fat bet on a blackjack table risking millions in a heartbeat if it would somehow change the course we’re on with Rudy.  We saw Dr. Harake today for Rudy’s routine echocardiogram.  All the activities that fill our family’s crazy calendar in the weeks between appts with Dr. Harake are such a fun and healthy distraction from Rudy’s reality and I find the cardiology check-ins leave me feeling a little raw.  A strange juxtaposition as I really appreciate talking with Dr. Harake and having Rudy monitored so closely every two months but I do walk away reminded that Rudy’s heart is in a constant process of failing…the constant dull ache in my heart resurfaces and the burden feels a little bit heavier.  I’m grateful, though, that Rudy is managing it all well and thriving…grateful for the respite of fun in between the reality checkpoints and so grateful Rudy is in good hands.  Rolf and I may very well be taking risks on Rudy’s behalf as we try to navigate this crazy course but I’m so profoundly grateful that we’re not shouldering the burden alone…Rudy is surrounded by an army of friends and family who pray, a host of gifted medical professionals who skillfully treat and the God of hope who sustains, strengthens and grants peace in the midst of it all!   I might be a little weepy tonight but I’m eager to discover what fun distractions tomorrow will bring.  🙂  Thanks for praying dear ones!

Here are a few of the rich distractions from last week…

One of my favorite things about the fall season is the official school picture portrait!!! There’s just something about getting that envelope full of pictures sent home from school that excites me…it marks another milestone in the lives of our kids and marks the passage of time on our fireplace mantel. We have a lot of gorgeous photographs of our kids that I cherish…everything from the silly candid shot to the artistic (mostly thanks to Greg Lawler! Ha) but the quirky, slightly awkward school pictures we’ve collected over the years are favorites as well! I guess it’s more about the subjects than the pictures themselves 😉

This year we get to add Rudy’s first school picture portrait to the mantel! A kindergarten picture that is fast becoming a family favorite complete with an oxygen tube impression on his face , a clip-on tie that’s too heavy for his shirt and a slightly crooked, happy smile that brightens up his whole face!!! Priceless!! I LOVE IT! I love these pics…I love these kids!!

Happy Fall Everybody!

Here’s a look back at the big kids’ Kindergarten school pics…

🙂

Rudy went from “Super Star of the Week” to a weekend full of stars as we celebrated at SBRM’s “Viva la Bayou” event on Saturday and the UCLA Mattel Children’s Hospital’s “Party at the Pier” on Sunday.  It was a jam-packed weekend but it was filled with things that refresh my soul (good friends, family, hard work, hope and sunshine) so it was energy and effort well spent.  We’ve had another wicked heat wave blaze across southern California so I was a little nervous these outdoor events would be too hot for Rudy but he handled it all pretty well and we all focused on the fun to be had.  🙂  We’ve had a crazy schedule of significant experiences in the last week and a half on top of the regular family routine so it’s going to be hard to slow down and catch up on the chores I’ve let go in the last few weeks to prepare for all these special events.  It’s time to get back to real world stuff…;)

Talk about a week FULL of all kinds of fun!  Sandwiched between all the Heart Walk activity last weekend and the Santa Barbara Rescue Mission’s annual Bayou event coming up THIS Saturday, it’s Rudy’s turn to be “Super Star of the Week” THIS WEEK at school which means he gets to share a little about himself each day, he gets to be line leader each day AND sit at the front of the class during circle time, etc, etc…  Not surprisingly, Rudy is EATING IT UP, relishing being in the spotlight and LOVING the special attention from his teachers and classmates.  I’m a little nervous he’ll experience a tough “fall from grace” next week when he’s no longer Super Star of the Week but we’ll cross that bridge when we come to it.  🙂

In the midst of it all, of course,we celebrate TODAY…10-01-2014…Rudy’s 6th Birthday!  My emotions have been all over the map today but bottom line our boy is deeply loved, he’s happy, easily laughs and eagerly embraces life…any way he can.  He’s growing in independence, determination and ability.  He’s moving forward which means we’re moving forward along with him…one step at a time.  Happy Birthday Rudy…you enrich the life of our family.

This has been a BIG “Back-to-School” week for us…we’ve had a “Back-to-School” night at a different school almost every night!  🙂  Although the introductions to the kids’ teachers are always lightening-quick and information-packed, it’s great to get a glimpse into the kids’ day and meet the individuals who are investing in them so significantly…it’s an impressive list this year!!

We’ve also spent a good bit of time preparing for the Heart Walk and the Santa Barbara Rescue Mission’s annual fundraising event BOTH less than a month away!  Yikes!!!  This is always a full time of year with many significant celebrations but this week included one of the most special…the anniversary of the day our sweet Olivia was born!  🙂 Although her 12th birthday on Tuesday was full with school, soccer practice and a jr. high bible study, we managed to squeeze in some celebrating!!  This is a particularly significant bday for Olivia as it’s her last one before the teenage years and it also officially marks the start of a new era…she has now lived longer with Rudy IN her life than not. For half of her life, Olivia has journeyed with Rudy by her side and I can only imagine the ways her life has been impacted as a result.  I pray each day that the impact has been and will continue to be a positive one for all the big sibs.  It’s hard to believe that Olivia was just 6 when Rudy was born…WWWWHAT?!?!?!?!  She was so small…since “Rudy years” are a lot like dog years, it feels like a lifetime ago.  🙂

We’re grateful for the thoughtful and compassionate young lady Olivia is growing up to be…there is much fun on the horizon for her as she settles into the big world of junior high and we celebrate all the joy and growth of the past 12 years while anticipating all the fun to come!!  Happy Birthday Big Girl!!

In preparation for the upcoming Heart Walk, we had the opportunity to visit the Westmont baseball team on Monday and share Rudy’s story.    The Warriors form a team of their own every year and have become a special part of our Heart Walk experience!  Go Warriors!!!

Rudy has been working hard on his walking…Oma caught the Wonder Boy on video during her visit last month…at the rate he’s going, he’ll have no problem walking on his own at the start of the Heart Walk!  Go, Rudy, Go!!!

Rudy has also been working hard in therapy…motivated to try new things in PT like “mountain climbing” and is super proud of his “snack time” during OT…

Here are a couple more recent highlights…

No matter what today holds for you, I pray there is something to savor and celebrate!  Bless you friends!!!

We’re dusting off our walking shoes again and gearing up for this year’s Santa Barbara Heart Walk benefiting the American Heart Association on Saturday September 27th.  It’s coming up QUICK!!!  This will be our family’s 5th consecutive Heart Walk and we are excited to gather Team Rudy once again for this fun event to celebrate Rudy’s upcoming birthday and all that he has overcome these past SIX years!!!  (Can you believe he’s going to be 6?!?!)

This has become a very special tradition for our family and has grown to include many of you who have helped in our fundraising efforts and/or joined us at the event over the years.  We’re not ones to pay too much attention to numbers, normally, but were overwhelmed going into this year’s event realizing that we’re very close to reaching a cumulative fundraising total of $50,000.00 in the 5 walks we’ve done!!!  To date, we are just $4,000.00 away from reaching 50K!!!  WOW!

As in years past, the money Team Rudy raises will go to fund pediatric research and programs…particularly meaningful to us as Rudy’s future is dependent on new developments in pediatric cardiology. One of Rudy’s cardiologists at UCLA was recently appointed as director of research in the field of mechanical hearts in pediatrics (he has a much more sophisticated and official title than this but you get the idea). When I asked him back in June how long before a mechanical heart would be available for a kid like Rudy, he answered “20 years”. I sure would love to close that gap!  And research will do it!  🙂

After last years Heart Walk, Rudy’s cath lab cardiologist (Dr. Dan) asked me about the Heart Walk and how it went. I told him how Team Rudy raised over $12,000 for the American Heart Assosciation in 2013 alone to which he responded “Oh yeah? I’ve gotten AHA grants in the past.”!!! What a wonderfully personal connection to make…so motivating in our efforts to raise awareness and funds that we pray will benefit Rudy.

Our hearts are truly grateful and we’re so excited…if you are compelled to do so, we invite you to join us by making a donation to “Team Rudy” and/or help us spread the word.  We have set a goal to raise $10,000 by September 27th which would put us a little over a grand total of $50,000 raised by Team Rudy since 2010. Wow! AMAZING!! You can click on the link HERE to donate (fast and easy) today or to learn more about the American Heart Association.  

As faithful Rudy’s Beat readers know,  Rudy continues to be in limbo regarding treatment to his heart but he has made amazing progress developmentally this year. He loves his new school, adores his big sibs and is rarely seen without a BIG smile. We count ourselves truly blessed and continue to navigate this journey one day at a time. Thank you for your investment and support along the way…we are forever grateful and we love you right back!!

Come join us for cupcakes on the 27th if you can…look for the “Team Rudy” tent on Cabrillo right across the street from the Fess Parker resort rotunda (at the crosswalk)…you can’t miss it!  🙂  

 

My oh my!  Talk about taking advantage of EVERY minute of our little family summer vacation!  We were blessed to go to two very special weddings two weekends in a row…one in the Bay Area and one in Malibu…so we turned it into a family road trip and filled our week on the road with a college visit for Wilson, a day at Knotts Berry Farm, a stop at the US Swimming Natl Championships in Irvine, a Angels/Red Sox game in Anaheim and visits with friends we haven’t seen in a long time…we were only gone for a week but we packed in a ton of fun experiences.

Sadly, once we got on the road, Rudy came down with the same fever bug Olivia battled the week before so our itinerary changed a bit along the way as needed but, all in all, he was a real trooper and managed to have a little fun too.  His fever lingered between 102-104 degrees for 7 days!  Because it was a viral infection, there wasn’t any medication we could get him to help fight the bug so we had to wait it out and tried to keep him comfortable.  In a situation like this, our biggest concern is dehydration so keeping him well hydrated was our #1 priority.  Like with Olivia, once his fever broke, he bounced back quickly and is definitely back to his perky, goofy self…especially now that we’re home.

Because our road trip was filled with significant life celebrations and opportunities to reconnect with dear, old friends, I’ve come away from it all grateful for life, grateful for where we’ve come from, grateful for how God has directed our steps along the way and so grateful for the people with whom we’ve shared the journey.  This trip was a reminder of how rich we are in relationship and I don’t take it for granted one bit…here are some of the highlights:

 

With that our summer is nearly over.  Wilson headed back to school on Monday for Marching Band Camp and we have some school shopping to do.  School orientations/paperwork are next week.  We’re finishing the summer on a high note, though, with a visit from Oma who arrives this evening!  It’s hard to believe another school year will soon start but it’ll be exciting as Livy and Rudy start at new schools and fall sports start up again.  This was a packed summer on many levels and not particularly restful but I’m grateful for what it all meant in the life of our family and praying for energy and God’s grace as we gear up for another year.

‘So grateful Olivia’s fever finally broke and Wilson & Rolf made it home safely from Chicago early this morning.  Thank you for your prayers.  Even though the past couple of weeks have been difficult for me, there have been some fun moments too and I didn’t want them to be forgotten so here’s a little look as some sweet summer fun…

 

We have just a little over 3 weeks left of summer…time enough to cram in a few more highlights!  Ha Ha 🙂  Stay tuned…