Rolf made it home safely from being with his family in Alabama late on Saturday…since then we’ve been trying to settle back into the regular routine but it has been a weird week…it’s busy, lots to catch up on, we’re all tired and life feels scattered…but, there has been some random fun too:
Came home from dropping Olivia off at Volleyball practice to find the boys wrestling in the hallway…Boys!Rudy got to celebrate ANOTHER 100 days of school at his district special ed school…more 100 day fun! 2-19-14Holter Monitor test 2-20-14 – no word yet on the results.
We’re waiting to hear back from Dr. Harake about Rudy’s Holter Monitor test last week…I don’t expect any BAD news but I am hoping we were able to get some good data. Normally the sticky probes stick like cement but we had an unusually warm day on the 20th causing Rudy to sweat which then caused the probes to peel off at different times throughout the 24 hour test period. I tried to stick them back on to finish the test but we’ll have to see if it worked. I’ve never had that happen before. 🙂
I drove Wilson up to Pismo Beach on Sunday for a school jazz band gig at the Veteran’s Hall for an audience filled with vets from an era that loved to jitterbug. The kids’ renditions of “In The Mood” and “American Patrol” brought the house down. I wanted to jitterbug so bad…I looked around the room to see if one of the old timers would dance with me. Then, as an early bday present, Wilson came down offstage to dance with me during one of the songs in the set where he doesn’t play! SO FUN!!! He was a good egg to dance with his mom in front of his classmates…BEST BIRTHDAY GIFT EVER! 2-23-14
Oh yeah, btw, it’s my birthday today. 48 and counting! Grateful.
Mama’s Bday dinner at The Nugget! YUM
Livy made me a homemade carrot cake from scratch with a little help from her dad…Thanks, T, for the recipe! 🙂 YUM
The family is heading to an annual Make-a-Wish fundraising event tomorrow to share about Rudy’s Wish Trip to Give Kids The World…we are honored to share our experience with the Make-a-Wish Foundation and are looking forward to a special evening out together.
Speaking of Give Kids the World….we shared a few years ago about a Rudy’s Beat friend in her own battle for survival…click here and scroll down to the end of the post. Megan and her family got to visit Give Kids The World last week and they found Rudy’s paving stone that was placed on the Avenue of Angels after our visit last year…right in front of the Castle of Miracles!!! So cool…Thank you Megan!!
We are grieving the loss of Rolf’s dad today. After a long battle with Parkinsons, Franz had a stroke 10 days ago and passed away yesterday (Monday), February 17, 2014…he was 87. I am grateful that Rolf was able to fly out Sunday and arrive in Auburn in time to be with his family and spend time at his dad’s side before he passed. Franz will be missed. He was a good man who cared for his family, was passionate about his life’s work as an engineer, made significant professional contributions in his field and modeled commitment throughout his life to his wife of 52 years, his work, his four children and later to his 15 grandchildren.
I loved my father-in-law and appreciated his presence in my life. I’m grateful for the ways he welcomed me into his family and demonstrated his care and concern for my family. Franz was a man of contradictions which is what made him so interesting to me…at first glance, I don’t think anyone would have described him as a huge risk-taker…he was conservative with his resources, careful in his choices and methodical in his approach to life and yet he made some pretty bold moves in his life that included leaving his family in China and Europe as a young college student to establish a new life in America – pretty risky if you ask me!
Franz could also be described as extremely intelligent – he had an engineer’s mind that could easily digest all things technical. If you asked him a simple question, more often than not his answer would be filled with references to physics and other branches of science you didn’t even know applied! 🙂 Opa may have had the mind of an engineer but he also had the hand of an artist and he delighted us in his later years with his renderings of familiar places and faces (Rolf’s roses were a favorite subject during visits to Goleta).
Opa’s sketch of Max in 2001.
I knew Franz to be a man of many words…if you got him talking about his fascinating family history, he could spin a detailed yarn for hours at the dinner table…and yet, I also knew him to be a man of few words…he chose his words carefully and was thoughtful (maybe even sparing) in his affirmation…which made notes like this one even more meaningful:
Losing Opa makes me miss my Dad a little more today too. I am blessed to have had them both in my life.
Schlaf gut Opa! Schlaf in himmlischer Ruh…Liebe, Trish
Opa getting a little Rudy-love.
“Merciful Jesus, Lamb of God, Grant him rest…everlasting rest.”
(an abbreviated translation of “Pie Jesu”…my version below recorded for the service)
Rudy got to celebrate Valentines with BOTH of his classrooms but I only got a picture with one…what a fun, full day it was!Valentines are super fun!Great minds think alike…Rudy and his nurse, Sara, brought the exact same Valentine’s to share with the class!!! ha ha
It wouldn’t be Valentine’s without our traditional greeting…Rudy joined in for the first time and performed like a pro! We dedicate this 2014 version to Opa and Oma! Feel better soon Opa…we love you both!
We’re right in the middle of CHD Awareness Week (February 7-14) … I think it’s sweet how it leads up to the biggest HEART day of the year!!! Rudy, Olivia and I enjoyed kicking off the week with a little mini-reunion that included Logan’s mom, Rayme, Nurse Joyce (who kept a watchful eye over Rudy and Logan when they were in the hospital together the fall of 2008) and Jeni Busta – CHD survivor (who, by the way, was a patient of Joyce’s 28 years ago!!!). It’s always an encouragement to be with these friends and I’m grateful for our special bond.
Rudy was all smiles on Feb. 7th with Jeni, Joyce and Rayme!Not that it has anything to do with CHD Awareness Week but Rudy got to see Max’s JV Hockey Team win the league championship on Saturday in a double-overtime, nail-biting finish!! Very exciting!
Rudy’s “official” Rifton walker doesn’t fit through the door frames in our house so we got him a “grown up” walker that he can easily navigate inside!! He’s quick to pull up and go, go, go. There may be a few more nicks in our baseboards before he masters it but I kinda like the “distressed” look in woodwork anyway. Ha Ha
It’s kind of a fun week…lots of exciting Olympic coverage to watch…a 4-day weekend to look forward to….AND Valentine’s Day is just around the corner!!! Happy Heart Week dear friends! ‘Wishing you love and happiness…
This sure has been a crazy winter…polar vortexes, record high temps and drought in southern California, record low temps and crazy amounts of snow everywhere else…with all the talk of high and low pressure systems on the daily weather report in recent weeks, my ears perked up today when Dr. Harake started talking about high and low pressure systems in relation to Rudy’s heart! Wait! What branch of science are we talking about?
We had a routine check-in with Dr. Harake and talked a good bit about our consult with Dr. Alejos at the pediatric cardiomyopathy/transplant clinic at UCLA last month. Although Dr. Harake is in regular communication with the team down at UCLA, it’s important for us to be in communication with them as well and Dr. Harake encourages it…he just wants to make sure we’re all on the same page and not missing something. It’s pretty clear to us what Rudy’s options (or lack of options) are at this point and we agree with Dr. Harake that the best course of action is the one with the least risk (i.e. when the risk of NOT doing something becomes greater than the risk of doing something, we move forward…until then we stay put).
With that said, our discussion today centered on where Rudy is ultimately headed. Dr. Harake likened what is going on in Rudy’s heart to an accelerated aging process…it’s working hard and, as a result, it’s aging fast. Rudy’s little right side of his heart was intended to pump blood to his lungs – a LOW PRESSURE SYSTEM – but instead we’re asking it to pump blood right now to his lungs AND his body which is a HIGH PRESSURE SYSTEM! The extra pressure is and will continue to take it’s toll on the rest of Rudy’s body as well as his heart. His other major organs are, like his heart, enlarged and will be problematic over time…an indication of congestive heart failure. Rudy’s heart rate was a little low today so Dr. Harake ordered another Holter monitor test…the last Holter we did was over a year ago so it makes sense to do it again anyway. We’ll have the small monitor placed on Feb. 18th for the 24 hour test so he can wear it to school and therapy that day…it will be great to get data during his most active times. I suspect all will check out okay. If the low heart rate and enlarged organs were, indeed, an indication of heart failure, we expect his demeanor and stamina would change as well which certainly isn’t the case so it feels like we’re really in season of monitoring and establishing baseline data with all these tests. Dr. Harake is going to talk with Dr. Dan and discuss whether or not to get a heart cath on the calendar. Other than that, the plan is to lay low… to wait and watch. Thanks for waiting and watching with us!
Warm hugs and love to all our friends and family buried in today’s snowfall…stay warm!!
It just so happened that the 100th day of school celebration at La Patera was today (Monday) so Rudy got to enjoy the special festivities which included a parade around school…reminds me of another 100-day celebration Rudy participated in! Remember this? CLICK HERE
Rudy’s first day at La Patera Elementary School 1-27-2014
Rolf’s last post about “managing our expectations and emotions” accurately describes the emotional valleys we encounter as we continue to live “in limbo” alongside Rudy. Although we struggle with Rudy’s uncertain future, there is comfort in watching Rudy enjoy life to the fullest…I’m not sure it’s accurate to say that he is “blissfully unaware” of the battle he is in but he certainly doesn’t know any different and there is very little that steals his joy and smile.
Today was another perfect example of how heartache and deep, deep joy coexist in this crazy journey. After months of discussion and planning, Rudy had his first day of Kindergarten at our neighborhood school today! His modified schedule includes Mondays at La Patera and Tuesdays through Fridays at his current special ed school where he will continue to work on specific goals and receive special services. Knowing that this year was going to be a bit of a transitional year for Rudy as he moved from a county program to our local school district a full year before his formal Kindergarten placement, I requested that he have an opportunity to attend our neighborhood school where he and Olivia could have a shared educational experience and where he would have a chance to interact with neighborhood friends (i.e. gal pal Stella). Rudy will likely go to another Goleta school next year with an established special ed Kindergarten program and because Olivia will be headed off to Junior High next year, this is their only chance to go to school “together”. Needless to say, we’re all so thrilled that the district and LP community were willing to work with us, see the mutual benefits for all involved and welcome Rudy into the classroom mid-year!!!
Everything about today was precious. The day started when we pulled up to the school and Rudy said “Bye, I-ya (Olivia), see ‘ya” to which Olivia replied “Rudy, you’re coming too!”. The minute we got out of the car and headed to the Kindergarten playground, Rudy’s excitement was undeniable…he was quickly surrounded by classmates who were told last week that he would be coming and he bonded with some of the kids over basketball. We are overjoyed that Rudy’s school nurse, Nurse Sara, is able to accompany him at both schools…her support and the continuity of care that she can provide no matter their location is crucial and such an amazing gift.
In response to a letter (see below) the school sent home about Rudy last week, one of the little boys in Rudy’s class walked right up to me and said with a proud smile “My mom told me to be nice to Rudy.” (Ha, ha – Classic) The kids circled up and when Rudy’s new teacher introduced him to the class, Rudy waved enthusiastically as if on cue. To see him so warmly welcomed by the students and staff at La Patera was, well, magical…
Time to meet new friends!Rudy was happy and excited the minute we walked on the Kindergarten playground!
Rudy and big sis together at school!Rudy waving a friendly “hello” to his new teacher and new friends……and sharing a BIG smile with ol’ friend Stella!!Rudy wasn’t too interested in coming home when it was time for pick up! 😉
When Rolf and I arrived to pick Rudy up, big sis was helping in his classroom during her lunch break and Rudy was playing on the computer with friends. We had a hard time tearing him away and it all clearly made a big impression because the first thing Rudy said to us was “Dad, Mom! Neat game!!”. Nurse Sara and Mrs. Farrington confirmed that Rudy had a great first day filled with smooth transitions between activities, positive interactions with the other children and a happy demeanor…a happy heart! As a result, our breaking hearts are happy too…a curious combination.
a note from one of Rudy’s classmates…precious!…a letter introducing Rudy to his class.
After getting the kids settled back in school, our household got hit with the flu…Livy came down with it on Tuesday evening and Max & Rudy got it practically simultaneously early this morning. Thankfully it ran it’s course through Olivia in less than 24 hours so I hope it’s the same for the boys. ‘Praying it stops there and doesn’t bring the rest of us down. Grandma Jo headed home yesterday and made it safety back to KS…dodging the flu bullet! Needless to say, we’ll be staying close to home the next couple of days. 😦
Well, as much as I hate to see Christmas vacation come to an end, we are a week into 2014 and the kids are back in school so I guess it’s time to move on. Welcome 2014! This time last year we were preparing to go on Rudy’s Wish Trip to Give Kids The World…it’s hard to imagine what 2014 will bring that could top the fun we shared in 2013 but my prayer is as it always is at the start of a big, unknown new year…that we’ll take it one day at a time and see God in it all…the good and the bad! 🙂 We trust that this will be a year of great gain for Rudy…that his health concerns will continue to take a backseat to his developmental progress and that he’ll find great joy in his family and his growing community of friends. He sure enjoyed the extra time he got to spend with his big sibs and Grandma Jo over the break. The harsh reality of the big sibs being back in the school/homework routine, Grandma Jo going back home to KS on Wednesday and Nurse Dodi’s retirement is going to hit hard later in the week when he’s left with only good ol’ (boring) mom to play with during the day. Poor guy…how long ’til Spring Break?
Well, we have this week to get organized and the house back in order before Girl Scout cookies arrive (YEP, it’s that time of year again) and our meeting with Dr. Alejos at the Cardiomyopathy clinic down at UCLA on January 16th. I have lots of thoughts and questions swirling around in my head that I’d like to rein in a bit before our appointment but it’s getting harder and harder to carve out time to process things…we kind of just take things as they come these days…so we’ll see.
2014 has started out pretty great with some sweet sibling moments…’praying it continues on this positive trajectory in the months ahead!
Rudy, Max & Olivia were happy at the stroke of midnight on New Year’s…Wilson was not…Simple vacation fun…Max trying his hand at Rainbow Looming!……movie night……video games!…a quiet moment with G’ma Jo.
As we say farewell to 2013, our family is also saying “farewell” to Rudy’s longtime nurse. Nurse Dodi was assigned to Rudy’s case nearly 4 1/2 years ago shortly after we brought Rudy home from the hospital and after threatening to retire for awhile, she decided now is the time to scale back. We appreciate Dodi’s sweet care of Rudy…she has been an important member of “Team Rudy”…she will be missed! 🙂
Nurse Dodi and Rudy in 2009Birthday buddies in 2013!Rudy will miss his special playmate! 😉
Thank you Dodi!!
It’s hard to believe that 2013 is coming to a quick close but we have a truckload of fun memories to take with us as we continue to live one day at a time and not try to anticipate what the new year will bring! 🙂 HOPE and LOVE to you all…Happy New Year dear friends!
Goodbye 2013…
Last minute Christmas preparation included cookie decorating…Wilson spent 20 minutes on one cookie!!His technique even involved tweezers…Punisher Christmas Cookie??????Christmas morning 2013!
Rudy’s gift from the folks at Tiffany & Co!The 5th annual SBRM Turkey Bowling champs!!a little post-Christmas trip to the beach with Gma Jo…ending 2013 with temps in the mid-70s…just sayin’.
Rudy's Beat 