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…;)
Months of hard work by the SBRM Women’s Auxiliary culminated in a beautiful fiesta that raised $366,000.00 (so far)!A gorgeous day at Rancho Dos Pueblos.A full house!!Thanks, Dale Weber, for this little gem! ha ha…local News Anchor Victoria Sanchez?…80s Super Model Kathy Ireland? Rolf just may frame this one……I’ll DEFINITELY be framing this one!!!!Celebrity sightings continued for our family on Sunday in Santa Monica…sharing a laugh with “Modern Family” star Nolan Gould…..getting autographs from “Modern Family” cast member Rico Rodriguez and his big sister Disney Star Raini Rodriquez…We also ran into a few of Rudy’s Rock Stars like UCLA’s Dr. Nina Shapiro……Dr. Gary Satou……and Dr. Rick Harrison!Rudy and the big kids played a few games….
…rode a few rides…
…and enjoyed a hope-filled day! 😉You can’t go to a Mattel event and NOT stop to say “hi” to Barbie……who, by the way, Olivia and Rudy met in the CTICU in December 2008! 🙂 Yeah, they’re besties!!! HaTwo dolls!Oh my gosh! Just ONE of the piles in my house that needs to be addressed today!! 🙂 Ha Ha Ha
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. 🙂
On Day 1, Rudy shared this letter with his classmates to introduce interesting facts about himself. 🙂 Rudy taking GREAT joy in assisting Mr. Casady during song time on Monday!Circle time fun!One of Rudy’s classmates gifted us with a picture he drew of himself and Rudy 🙂 I LOVE his depiction of Rudy in his wheelchair…sweet!
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.
Special Super Star Birthday Celebration with Miss Aveddisian (SDC teacher) today 🙂A little birthday snack to share with the class…A late night celebration on 10-01-14 at Yogurtland.Rudy’s stash of homemade gourmet cupcakes he got this weekend from a friend of Wilson. YUM!Rudy sporting his new bike helmet! 🙂
While I was walking Rudy into the Kindergarten play yard from the parking lot one day last week, one of his classmates walked alongside us and politely peppered me with questions about Rudy. After a little pause in our conversation she asked “How old is Rudy?” and I said “He’ll be 6 next Wednesday.”. Without hesitation she said “WOW! He’s old!”. I think I surprised her a bit when I threw my head back in laughter and responded “You have no idea how glad I am to hear you say that! We sure have lots to celebrate next week!.” 🙂 Even though this little one is likely only a few months behind Rudy in age, I love that there are now kids younger than Rudy who see him as a “big boy”…a GREAT reminder of how far Rudy has come! 🙂
The celebration of Rudy’s 6th birthday started early yesterday with a fun turn out for the American Heart Association’s annual Heart Walk. The crazy heat wave finally broke early last week and we enjoyed a gorgeous Saturday morning along Cabrillo with the ocean as our back drop. Local friends along with some friends from L.A. and Irvine joined us for the 5K Walk/Run and I’m SUPER proud to report that “Team Rudy” surpassed it’s 10K goal by raising a total of $11,620.00…putting our cumulative grand total at nearly $52,000.00!!! TRULY AMAZING! Well done everyone!
It was fun to share the morning, once again, with DP’s drum line and Westmont’s baseball team…with special “heart” buddies like fellow-survivor John Dixon and Logan’s mom, Rayme…and countless friends from the special community that surrounds our whole family. What touched my heart most this year was watching how the big sibs engaged in the day…they put great thought into their plans leading up to the Heart Walk, took it upon themselves to invite friends and enjoyed the event together but in their own individual ways. It’s familiar to them now, they’ve caught a vision and they were invested…LOVE IT!
Rudy? Well, he definitely had a plan of his own as well. After weeks of walking up a storm at home, he chose NOT to walk at the start of the event…stubborn would be putting it mildly. It’s as if he was saying “I’m not your performing monkey” while refusing to walk in front of the drum line, cheerleaders, dozens of onlookers AND the media all waiting for him to triumphantly walk unassisted!!! Rolf and I pulled out every trick in the book to coax him into walking but his determination to NOT walk was steadfast. He did, however, feel all kinds of freedom to walk when all was said and done and the crowds were long gone! Honestly!!! 🙂 I decided pretty quickly, though, that I can’t be too frustrated with him as it’s that stubborn streak of his that has likely contributed to where he is today…it’s a big part of what we’re celebrating in him this week! 🙂
Of course, celebrating Rudy goes hand-in-hand with acknowledging the hundreds of people in his life that have played a part in his successes…everyone from those who have said a prayer to those who are hands on in his care. You are all heroes in our book and we invite you to share in the celebration! To the larger “Team Rudy” community…YAY YOU!!! We are so grateful!
Here are some HEART WALK 2014 highlights (by Greg Lawler):
Team Rudy was easily identified by the trademark blue balloons!Rudy sending off his friends with a fist pump at the start of the walk 🙂“Ready, set, GO!”NOPE!! Rudy protested by refusing to put his feet down when Livy and I tried to help him along!!!At one point he turned around and took a step or two in the opposite direction!Even Daddy couldn’t talk him into cooperating!
Rudy ended up catching a ride with Olivia and friends!All smiles now!Another perfect day in Santa Barbara…Rudy and his heart buddy John Dixon!Rudy and the Westmont Warriors!Rudy and the Dos Pueblos JV Cheerleaders…..and some of the Varsity cheerleaders!Rudy and the Dos Pueblos drum line!Maxo and friends!Team Rudy ROCKS!!!!!
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!!
September 9, 2002September 9, 2014
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!!!
Westmont Baseball Team 2014-15
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…
Rudy was quick to climb up the mountain to retrieve a “cool” hot wheels car!Rudy is lovin’ him some sour cream and Doritos!Picture Day at school! Stay tuned for the first official school picture!!!! Ha Ha
Here are a couple more recent highlights…
Some fun with Max captured by Greg LawlerWilson was invited to help a friend with her Girl Scout Gold Award project…she planned a “Senior Prom” at a local assisted living community! Such a cute idea and Wison’s dance card was full all night! 🙂
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! 🙂
Truly grateful for another blessing-filled year with this goof ball!A beautiful day in Santa Barbara last year…Heart Walk 2013!Rudy walking the first block on his own!!! Heart Walk 2013Yay Rudy!!!! Heart Walk 2013
Today marked the start of the 2014-2015 school year for our kids. We also said goodbye to Oma after her 2 week visit. It was a big day (especially for Livy and Rudy who started at new schools) with some mixed emotions (sad to see Oma go, Livy’s nerves over starting Jr. High) but we’re ending the day on a happy note…Rolf, Olivia and Max ran off to the beach to surf as soon as Rolf got home from work…a big hurricane swell came in (!), Wilson is having a rare quiet evening at home and Rudy is quietly playing with a basket of cars after a 2 1/2 hour nap!!! Ha Ha
The last few weeks have been so packed…right up to the end of the summer which made today feel like a crazy abrupt start to structured life again. I may not be ready for summer to be over but I’m super excited for the kids…it’s going to be a great year!
– Wilson is embracing his senior year with GREAT enthusiasm,
– Max is excited about playing hockey again this season and looking forward to a stellar sophomore year,
– Olivia has so many new experiences waiting to happen as a 7th grader – she’s going to LOVE the greater independence and responsibility that comes with being in Jr. High.
– And, Rudy? Well, he started at Mountainview Elementary today as a full-fledged Kindergartener in a split special ed/typical class. It’s a good placement for him and we expect the fun trajectory of progress he has been on lately will take flight in this new educational environment.
I anticipate there will be much to savor this school year!
Rudy had his routine appt with Dr. Harake (cardiologist) last week and his heart function looks as it did after the stent implantations in July…stable for Rudy so it looks like we’ll have a procedure-free fall. Yay! It would be great for him to have an uninterrupted season of school and therapy. Big stuff!! 🙂
‘Hoping your summer is wrapping up nicely. Happy Back-to-School Day to you and yours!
Fun with Oma!Pic with the big sibs too!!All smiles heading back to school!Car window “Love notes” to Wilson by Olivia and Rolf.Olivia and good friend Dahlia giving us the 7th grade thumbs up!!
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:
We cleaned up pretty good for the first of two weddings we attended last week…Thank you Lynches for putting us up and for the fun visit!!! I can’t believe we didn’t get a picture with you guys!!We were so honored to share in the DiRado’s big day. Maya is our god-daughter and her big sister, Sarah, is the beautiful bride! (pictured with foxy mama Marit) Rolf and I have officially entered the stage in life where our friends’ kids are getting married and it’s so special…surreal but special!!! 🙂Father of the bride Ruben was our best man…just a couple of years ago, right guys?We always love a chance to see Maya!We enjoyed a visit to Crossroads Community Church in Palo Alto the following day where we got to see our former associate pastor and his family & the boys shared a song for the offertory…I wish I had taken a video…they rocked it! 🙂Even a stop at our favorite “The Creamery” in Palo Alto didn’t make Rudy feel better! 😦A quick stop in San Francisco on our way to Sacramento was a welcomed pit stop!I enjoyed a mini-reunion with some of my dear Sac State friends and their families…it didn’t feel like any time had passed at all until I looked around at all the kids! ha haThanks, Gator, for making my kids’ first visit to Sacramento super fun and memorable!Next stop? Knotts Berry Farm, of course! Our family’s favorite!!!Rudy got a special lucky horseshoe from the town blacksmith! So sweet!……and he tried a few rides…
…but he mostly had fun watching the big sibs and friends Austin and Kylie run circles around him…when they weren’t eating funnel cakes!Thank you Kenyons for a super fun time in Irvine!While we were down south, we had the joy of watching Maya compete at the National Championships…Maya advanced to the finals during the morning prelims……a quick “hi” and a “hug” after the morning meet…In between the prelims and finals we made a stop at Max’s favorite hockey complex…sponsored by the Ducks, of course!……and squeezed in a sweet treat with Marit!Cheering for Maya in the finals!!!
Maya placed a thrilling 2nd in the 400 IM (behind Olympian Elizabeth Beisel)…she’s headed to Australia for the Pan Pacific Championships!!!Woo Hoo! Congratulations Maya!!!Sweet Maya gave sweet Olivia her podium bear!!!Oh yeah, we got to see Lochte and Phelps compete too.After Maya swam, we rushed off to Angels Stadium to see the Angels play against the Boston Red Sox (the tix were a bday gift for Wilson back in April). He’s a big Sox fan after visiting Boston last summer…they won!! Woo Hoo!!!Last but not least, we cleaned up again for Amy and Andrea’s wedding…everyone was all smiles and READY TO PARTY!!!We love these two and their extended families so much…it was a true blessing to share in their special day!Proud father of the bride Bob!Radiant mother of the bride Kathy!Rudy braved the dance floor and even got a turn with the bride!!It didn’t take long for all four to fall fast asleep on our final push for Santa Barbara at 1am…the mark of a well executed vacation!
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.
Our kids are pretty cute but every so often we take an okay picture ourselves. 🙂
‘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…
Wilson had fun with Rudy on the trampoline a couple of weeks ago…it’s a good thing I wasn’t aware of how high Wilson was bouncing Rudy or I probably would have put a stop to it and Mr. R would have missed out on some BIG fun!! Look at that smile!!…“Again, Wilson, again!”Big Air!Rudy learning some new dance moves at Vacation Bible School!Fun with Maxo too!Artist in the house! Our friend CeCe who painted this beautiful Rudy’s Heart a couple of years ago visited with her family on their way through town! Summer joy!It’s Fiesta weekend here in Santa Barbara…a favorite annual celebration. Viva La Fiesta!!!While Wilson and Rolf were in Chicago (on business and a college visit), they made a stop at two of my favorites – White Castle and my childhood home! Yay!
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.
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.
Rudy's Beat 