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):

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!

 

After an early morning echo exam, Rudy was cleared for discharge.

We’re headed home…with a stylish new hat!

Rudy cruised through the PACU and we made it to our room after just about three hours. Dr. Dan came and got me between cases as he felt it was important to support the USA and watch the World Cup.

Noticed the familiar room next door was empty too so I snuck in to check the inside of one of the cabinets:

We’ve come a long way. Quite a journey!

Rudy ended up having a four-hour heart cath. Longer than everyone expected because of what the team saw when they got in there. Dr. Dan and Dr. Harake saw a couple places where stents would ease the workload on the heart and were successful in doing so. More details later but for now we’re waiting it out in PACU until they give Rudy a room tonight. His first word when we got to him was “UP!” so we’ll see how successful we are at getting him to lie still like he’s supposed to. For now, the World Cup seems to be doing the trick!

A sleepy 4am departure for a 5:30am admit and 7:30am cath. We’re praying for smooth sailing all day. We’ll keep you posted…

TRACHE IS OUT!!!

Going to meet him now…wow!

Sent from my iPad

So, we got the call to report to admit at 8am tomorrow morning and Rudy’s procedure is scheduled for 10am!! Woo hoo!! As I waited to hear back from UCLA, I couldn’t help but pull out all of our trach supplies and pack them away in faith that Rudy wouldn’t be needing them after tomorrow! 🙂 It’s a bit surreal and Rolf & I have nervous tummies tonight but we’re definitely excited….Olivia put it all together and said enthusiastically “Without the trach, Rudy can get baptized!”. Indeed, he can…and so much more!

We’ll keep “The Beat” posted with the latest tomorrow….thank you friends!

Sorry if I left anyone hanging. I appreciate the texts and e-mails this AM checking on us–my phone battery died. The ER doc was happy with all the labs so we got sent home at 1AM. Rudy slept like a rock and was still out when I left for work this AM.

We just heard from Dr. Corraza’s office (neurologist) and Rudy’s going to spend some quality time with him this afternoon. Rudy gets to wear the fun hat for 90minutes (EEG–and by "fun" I mean "kinda sucky"). Consult afterwards. At least there shouldn’t be any needles. Thanks for your prayers and concern.

Was dozing on the couch in front of tonight’s football game when Max pointed out Rudy’s leg was shaking back and forth–another seizure for about 5 min–this one the first we’ve seen extending to his limbs. Max and Livy were pretty rattled. Trish stayed home and I (Rolf) came to the ER with him. Not sure why he can’t do this during normal business hours. It was a good weekend–arguably even a great one–thanks to an incredible Bayou yesterday and a 60th anniversary celebration for special friends today. Surreal how it can be bookended with stuff like this.

There are some pretty serious cases in the ER tonight (the CHP officers walking around and bringing family members in can’t be a good sign; the guy screaming at the top of his lungs is beyond unsettling). We waited a good bit before the doc came and I even had thoughts of unplugging Rudy and taking off. He was seemed OK, smiled at the couple nurses who remembered him from Friday and giggled when the doc tickled his toes to check his reflexes. I was even apologetic for bringing him in, but when they saw the video we shot (iPhone is a brilliant invention), they were pretty clear it was the right move.

Doc called neuro and came back with news I didn’t want to hear. Needed to take some labs. He was trying to avoid it since they took them Friday and we’re seeing neuro tomorrow anyway, but they just want to check sodium and digoxin levels before they send us home. Rudy was fast asleep and it ended up taking two sticks to get the blood they needed. Gave the Screamer a run for his money. Just. Plain. Sucks.

Going to have to wait an hour for labs. In addition to his hatred of the needles, Rudy has also protested every time he’s been placed on the bed–he doesn’t want to stay. So he’s fast asleep in his chair, save for the occasional catching-his-breath-after-a-good-cry noises, and I get the bed. We wait.