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…

 

I went to my friend’s service today…a beautiful celebration of her life.  Rolf and Wilson are out of town this week and Max stayed home with Olivia who has been battling a high fever and feeling awful since Thursday so Rudy and I went for our family.  I admit I struggled about going earlier today…I didn’t feel great leaving Olivia and I knew it would be hard to navigate the crowd with Rudy in tow but I’m so glad I went…it was beautiful.   As expected, the church was filled to its capacity.  I wasn’t sure if Rudy would be quiet so I sat in the baby/cry room with him…enclosed with a view of the sanctuary and audio piped in through a speaker.  As it turned out, Rudy was amazingly sensitive and sat quietly watching the service intently (especially the video montage of pictures of Kenon).  I, on the other hand, sat with tears streaming down my face the entire time (sobbing at times …grateful I was hidden in a soundproof room!)

 

For a handful of reasons my heart has been heavy the past couple of weeks…so heavy that it has felt like I’m barely keeping my head above water.  Even though I manage the day to day routine pretty well in general, it doesn’t take much for my anxiety and fatigue to surface turning into feelings of being overwhelmed.  It can be a quick downward spiral that’s hard for me to crawl out of.  So, there I was sitting in this little room today, trying to soak in all the beautiful things that were being shared, feeling overwhelmed and sad when Joni Eareckson Tada (who sent in a video tribute to Kenon) referred to “the buoyant hope of heaven”.  It was a quick reference in her thoughts on suffering but, boy, did my heavy heart perk up at the thought of the hope of heaven being a buoy on which to hold tight and rest…even if just for a minute…so I did!  During the two hour service I cried, embraced my fears, held tight to my hope in heaven and recommitted to the tasks at hand that have worn me down lately.  It was cathartic and precious…Kenon would be pleased.  🙂

 

I’m praying now that Olivia recuperates quickly…we have two special weddings coming up this next week and I’m praying the virus Livy has been battling ends with her and doesn’t spread to the rest of us…we have much to celebrate with dear friends in the days to come and I sure wouldn’t want any of us to miss out.

 

Grateful for the blessings of today…

It’s Vacation Bible School week at our church and that means all hands are on deck in our household as we all have our volunteer assignments!  Now that the big kids are older, it’s a real blast to get to partner together in this special ministry to kids in our community…it’s such a great week for our family but it’s also a bit sad for me as it falls, every year, on the anniversary of my dad’s death.  Dad died 4 years ago today of  brain cancer.  Tragically, I learned this morning that a local friend so dear to many of us, a loving wife and dedicated mother of 3 died last night after her 21 month battle with cancer…her fifth occurrence of cancer in the past 27 years.  Hers was an amazing journey of faith and love for people…she had a deep desire to know God and share what she knew to be true of God to others.  She experienced God in her day to day journey like no one else I’ve known.  I rejoice in her home going to Jesus and all that awaited her in heaven but my heart is heavy for her family and I’m going to miss her presence in our community…her comments of encouragement on Rudy’s Beat…her friendship.  This is a sad week.

 

 

 

 

 

We celebrated America’s 238th Birthday yesterday at the annual Santa Barbara Rescue Mission BBQ & Carnival.  The residents of the recovery program, staff and volunteers hosted a parking lot full of homeless guests who enjoyed a delicious bbq (I especially loved the pasta salad!), some fun ol’ fashioned carnival games and a bountiful raffle of helpful items. Rudy had run of the place in his walker and joyfully greeted the guests.  Luckily our friend Dale captured a bit of the fun…

We hope you had a happy day too!  Happy July everyone!

We made it home from L.A. just in time to take a dip in the pool before supper.  Rudy is eager to get in the water after a full day buckled in his wheelchair.  Our visit to the heart clinic today was relatively quick…Rudy made quick work of his extensive echo exam by sitting still and cooperating nicely.  We talked with Nurse Flo (the transplant coordinator) over her long list of routine questions and then we waited for Dr. Alejos.  He was needed at the hospital and couldn’t get away so we ended up seeing Dr. Reardon (a.k.a. Dr. Leigh) instead.  We don’t normally consult with Dr. Leigh but he was a fellow in 2008/2009 when Rudy was hospitalized and is quite familiar with Rudy’s history.  Although we would have really liked to talk to Dr. Alejos, it was fun to see Dr. Leigh again after all these years and hear him “oooh” and “aaaah” in amazement over how far Rudy has come.  One thing I like about Dr. Leigh is he’s not afraid to talk about the “what ifs” and he tells it like he sees it.  He took a look at the echo images and confirmed what Dr. Harake told us last week…that Rudy has moved from “mild” to “moderate” heart failure…but feels Rudy is still a ways off from being in “severe” heart failure which would be the next phase in the spectrum.  He did see a narrowing of the arch which he believes may need an angioplasty during next week’s cath but ultimately that will be Drs. Harake and Levi’s call once they get in there.  There really wasn’t a whole lot more Dr. Leigh could tell us.  We knew we wouldn’t walk away from today’s appt with any new revelations or game plan but we’re still left  feeling discouraged over the fact that there is no neat and tidy action step that will prevent Rudy’s heart from failing.

We talked a little about the purpose of clinic…how some patients are there for the transplant process while others are there simply to manage their heart failure and others still are there, like today, to transition from being pediatric cardiac patients to adult management and care.  It was interesting to see the young adults who were there today navigating that very crucial transition to adult cardiac care…once again, Rolf and I walked away from clinic with a glimpse into the giant picture that makes our little corner of the “cardiac world” seem very small…no less significant or serious, just that Rudy is one of many, MANY diverse situations and needs.  Honestly, I don’t know how the heart clinic Drs and NPs don’t leave work every day overwhelmed…I feel overwhelmed for them.  We’re scheduled to head back to clinic in 6 months.

So, our sights are now set on the cath next Tuesday.  Although Rudy has had close to ten heart caths in the past, this one will be different for him. Because he is no longer trached, he’ll have to be intubated which is uncomfortable and will leave him with a wicked sore throat when he wakes up from anesthesia.  😦  A trip to Baskin Robbins may be in order!  🙂  Thank you all for your continued prayers…we are forever grateful for, humbled by  and in awe of the love that surrounds our family.

Rolf and I got the big kids off to KS Thursday evening and headed home from LAX with our long list of “to dos” we hoped to get done while they’re gone. We no sooner settled in to the quiet house when UCLA called to reschedule Rudy’s heart clinic appt from July 3rd to June 24th…this Tuesday!!!! So we’ve adjusted our schedules to accommodate a full day in LA at clinic.

Shortly after getting the call from clinic, Dr. Harake’s office called to confirm a heart cath on July 1st, again, at UCLA! So grateful for a spot in the queue but it does put my stomach in knots!!

We’ll work on the logistics of it all this next week…stay tuned.

Missing the big sibs!