May Madness

May 19, 2015 by

We are grateful for the encouraging consults Rolf and Rudy had with key members of the heart team at UCLA on Thursday.  I’m heading back down to UCLA with Rudy this Thursday for his routine appointment at the pediatric dental clinic which will be our last appointment for a couple of months.  We consider this active, happy season with Rudy a true gift and look forward to big summer fun ahead.

As is typical this time of year, memorable moments are accumulating faster than we can record and Rudy has been in the middle of it all…

Rudy has taken great interest in the fire pit project that has been underway at our house the past couple of weeks.  To keep him our of the way, I finally perched him on top of the recycling bin for a few minutes while I unloaded the groceries from the van.

Rudy has taken great interest in the fire pit project that has been underway at our house the past couple of weeks. To keep him out of the way, I finally perched him on top of the recycling bin for a few minutes while I unloaded the groceries from the van and he had lots of questions for Jose.

Nurse Jomana was sweet to show up at Rudy's school carnival and he enjoyed "fishing" for prizes at the fishing pond most!  :)

Nurse Jomana was sweet to show up at Rudy’s school carnival and he enjoyed “fishing” for prizes at the fishing pond most! :)

Rudy made me the traditional kindergarten handprint AND a beautiful painted frame for Mother's Day!!!  Yay!!!

Rudy made me the traditional kindergarten handprint AND a beautiful painted frame for Mother’s Day!!! Yay!!!

We started May 9th by attending the Westmont College graduation ceremony...Rolf was honored as this year's Westmont Medal recipient for his work at the Rescue Mission...grateful and proud.

We started May 9th by attending the Westmont College graduation ceremony…Rolf was honored as this year’s Westmont Medal recipient for his work at the Rescue Mission…grateful and proud.

This is my favorite portion of Rolf's speech.

This is my favorite portion of Rolf’s speech.

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We left Westmont and headed straight over to a lacrosse festival Max's high school participated in...a quick stop to watch one of his games and then we headed home to relieve Wilson of "Rudy duty" so he could get ready for prom!!!

We left Westmont and headed straight over to a lacrosse festival Max’s high school participated in…a quick stop to watch one of his games and then we headed home to relieve Wilson of “Rudy duty” so he could get ready for prom!!!

Prom prep started a couple of days before when some of Wilson's friends came to the house to make corsages and boutonnières - so fun!

Prom prep started a couple of days before when some of Wilson’s friends came to the house to make corsages and boutonnières – so fun!

Tah-Dah!

Tah-Dah!

Wilson and good friend Aliyah all dressed up and ready to go!

Wilson and good friend Aliyah all dressed up and ready to go!

Rudy photo bombing!

Rudy photo bombing!

Rudy was a little bored at the courthouse taking pictures but found a quiet spot to hang with dad.

Rudy was a little bored at the courthouse taking pictures but found a quiet spot to hang with dad.

Prom kiss.

Prom kiss.

Later that night we met up with the kids at the DP After Prom Party!!  Woo Hoo  The photo booth ROCKED!!  I haven't pulled an all nighter (for fun) in a VERY LONG TIME!  I felt a little naughty getting home at 5:30am!  Ha ha

Later that night (STILL May 9th, by the way) we met up with the kids at the DP After Prom Party!! Woo Hoo The photo booth ROCKED!! I haven’t pulled an all nighter (for fun) in a VERY LONG TIME! I felt a little naughty getting home at 5:30am on May 10th! Ha ha

We had a day without electricity last week so we escaped to our church to practice for worship and an impromptu bball game broke out!

We had a day without electricity last week so we escaped to our church to practice for worship and an impromptu bball game broke out!

We were blessed to take a road trip up central CA this past weekend to share in celebrating good friends Jeremy and Becky.  Rudy has a few weddings under his belt and had no problem hamming it up for the bride and groom!

We were blessed to take a road trip up through central CA this past weekend to share in celebrating good friends Jeremy and Becky. Rudy has a few weddings under his belt and had no problem hamming it up for the bride and groom!

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Love these three!

Love these three!

We made it home from Max's lacrosse banquet last night with time left to celebrate Rolf's birthday!  We may have had to squeeze in a celebration (with a homemade ice cream cake) but we're all keenly aware EVERY DAY that our life wouldn't be quite as much fun without this man in it!!!  Happy Happy Birthday Big Guy!

We made it home from Max’s lacrosse banquet last night with time left to celebrate Rolf’s birthday! We may have had to squeeze in a celebration (with a homemade ice cream cake) but we’re all keenly aware EVERY DAY that our life wouldn’t be nearly as much fun without this man in it!!! Happy Happy Birthday Big Guy!

I said to a friend recently that our calendar has had too much of a good thing in it lately but I regret saying that because we certainly can’t ever experience too much quality time with Rudy or any of our kids…especially now that we face the first to fly the coop soon.  I’ll take the madness of May…June…summer, winter, fall or spring any time with enthusiasm and a very grateful heart.

A Day at UCLA

May 15, 2015 by

It’s been awhile since I (Rolf) posted on the blog, but since I did the run with Rudy down to the UCLA Transplant Clinic, we figured I should provide the update.  With the end of the school year upon us, it seems like there’s some activity or event every day.  Thursday it was Livy’s turn as she got inducted into the National Junior Honor Society.  Trish stayed home for that and Rudy and I rolled out of town shortly after 5am to make it to UCLA for an 8am appointment.

Pretty, sweet and SMART!

Pretty, sweet and SMART!

Not long after we were underway, I realized that the CD case wasn’t in the car, but Rudy wasn’t bugged because his recent favorite–“Hola!” a Spanish-language Kid’s album of songs about the sea–was on board and entertaining us.  Enjoyable for both cultural and education purposes for a listen or two, but assuredly crazy-making by the fourth repeat (“Yo soy un pi-ra-ta!  Yo soy un pi-ra-A-A-ta!!)  (“Cuantos peces diferentes colores hay en el mar?”  How many different colors are the fish in the sea?  EVERY BLASTED COLOR!!–and there’s a verse for every one of them!!!)   My subconscious desire to bring an end to this caused me to accelerate faster than I normally would as was pointed out by the law enforcement official who pulled me over. Full disclosure:  I’m ashamed (but admittedly relieved) to report that my smiling son singing his Spanish fishy songs in his wheelchair spared me a pretty expensive ticket.  During the traffic stop, I was able to locate the only other CD in the car–Olivia’s Taylor Swift–and begged Rudy for a switch to even this, but “Hola” remained the soundtrack for our day.

Anyhow, we got to UCLA and the action started:

Rudy stayed nice, still and happy for his ECHO.

Rudy stayed nice, still and happy for his ECHO.

After that, we went to the exam room to wait for the doctor.

What waiting patiently looks like...

What waiting patiently looks like…

But Dr. Alejos was delayed up at the hospital…

This is what waiting over an hour ends up looking like...

This is what waiting over an hour ends up looking like…

Nurses were apologetic as they kept us posted.  When Dr. Alejos came, Rudy held the door closed and giggled when he couldn’t get in.  When he did let him in, Dr. A took a look around the trashed room and said, “This provides us with most of the information we need about how Rudy’s doing.”  He did go on to do a thorough review of meds, recommended a few changes because of Rudy’s weight gain (he just broke 40lbs–yay!) and filled in history since our last check-in.  We then talked through the Echo report on the computer and he liked what he saw.  The heart function looks good with very little valve leakage.  While Rudy has been previously classified as “Moderate Heart Failure”, Dr. A would still categorize him as “mild” (or maybe “mild-plus”). After a quick listen, he pushed out the date of our next clinic visit to six months–no need to come back sooner.

Getting his "good patient" on...

Rudy getting his “good patient” on…

Rudy knew it was time to go and before I could get his stuff picked up and his chair ready, he had already given Dr. A and the nurses his “See-Ya”s and headed down the hall.  Wouldn’t get into his chair (“no! no! no! Dad!”) in the lobby or by the elevator and walked all the way out of the building.

See Ya!

See Ya!

Before we left UCLA we had a few folks we wanted to see, so we made our way up to the hospital and enjoyed a quick visit with Dr. Rick (who is now the Chief Medical Officer of the entire Reagan Medical Center, but we knew him back when he was just the best doctor in the world).  Rudy’s got friends in high places!  After that we had a fun lunch with our friend Melanie in the Development Office.  (Panang Chicken from Mr. Noodle is really yummy even when you aren’t stress-eating it as an CTICU parent!)

Didn’t get to see Dr. Dan, but it really lifted my spirits when I got an e-mail from him while we were still on campus:

“Saw Rudy had an ECHO today here at UCLA – the stent we put in his aortic coarctation continues to look great with no significant gradient and his RV function has not changed much (still fine) but he has less hypertrophy in his heart since the stent and less tricuspid valve leakage (both good things).  His Sano with all those stents in it is still open but very small compared to his heart now.  Right atrium is big but not bigger!

How is he doing?  Were you seen by someone today?  Let me know if I can help with anything – just looking at his ECHO made me happy and hopeful so I wanted to e-mail you guys!

 Dr Dan”

So, a pretty good check in and report.  As we’ve been so amazed at Rudy’s stamina and progression, it is comforting to have the internal report be consistent with this.  We’ve had our share of the more confounding “not sure exactly why he’s doing as well as he is based on what his heart looks like” consults.  Rudy and I headed home and I can report that I did much better at obeying traffic laws (but the traffic and rain likely had a lot to do with that).  There’s much excitement to come in the next month and we’re so glad Rudy is at the point he’s at to really enjoy it.  Stay tuned!

“Spring” in His Step

May 6, 2015 by

After battling multiple infections for 10 days, Rudy returned to school on Monday and his teacher reported to me this morning that he was back to his old self by Tuesday…active, happy, feisty.  The spring in his step is back and with all the fun to be had this week alone, we’re grateful he’s feeling better.  :)  Rudy’s school carnival is Friday, the senior prom at DPHS is Saturday and, of course, Mother’s Day is on Sunday!  Woo Hoo!  Lots of life to live the next few days.

We were all sad Rudy was so sick but this past week also included a couple of significant milestones for the big boys…

Big Boy Maxo is an official licensed driver!! Consider yourself warned!  ;)

Big Boy Maxo is an official licensed driver!! Consider yourself warned! ;)

Minutes after getting his license, Max asked to borrow the car to get to his last lacrosse home game...and so it begins!

Minutes after getting his license, Max asked to borrow the car to get to his last lacrosse home game…and so it begins!

The game ended and Rudy was like

The game ended and Rudy was like “come on guys! let’s play!!”.

Future DP Lacrosse Player?

Future DP Lacrosse Player?

Wilson and the DP drum line performed their last routine on Monday night at the all city showcase!  It has been GREAT fun to watch Wilson and his bandmates the past four years.  I know Wilson is going to miss it and so will we...

Wilson and the DP drum line performed their last routine on Monday night at the all city showcase! It has been GREAT fun to watch Wilson and his bandmates the past four years. I know Wilson is going to miss it and so will we…

...especially Rudy.  Their #1 fan!!!

…especially Rudy. Their #1 fan!!!

Rudy sure missed being at school and with his friends last week.  He has made up for it with some fun school moments this week...(Rudy's spring flower painting)

Rudy sure missed  being at school  with his friends last week and has made up for it with some fun school moments this week…(Rudy’s spring flower painting at Open House)

Examining a worm in science...

Examining a worm in science…

...recess fun with a friend...

…recess fun with a friend…

National Bike to School Day!  May 5, 2015

National Bike to School Day! May 6, 2015

More

More “Bike to School” fun with Nurse Viviana.

Rudy was featured in a promo video for a Make-A-Wish Air Miles Drive that was aired on our local news last week…the folks at KEYT did a good job…click here to see the video.

Looking ahead, Rudy has his appt at the UCLA Heart Clinic next week.  We don’t expect any major changes but we’ll keep you posted.  Thank you for your prayers and good wishes for Rudy’s restored health.  He is a blessed little boy to have you in his life!  :)  Happy Mother’s Day Friends!!!

Spring Fever

April 28, 2015 by

Spring fever has hit our household in more ways than one…there is a definite collective longing for the lazy, unstructured days of summer starting to develop but poor Rudy also came down with the yucky kind of fever making him pretty miserable for the past few days.

There was a staff shuffle within the district that resulted in a nurse switch for Rudy and last Friday was his first day with Nurse Viviana.  Sadly, he came down with a fever and was sent home from school early that day and hasn’t been back to school yet.  (Sorry for the crummy first week of Rudy duty Viviana!)  His symptoms were typical of the viral infections he gets from time to time so we hunkered down to wait for it to run it’s course.  Usually Rudy responds by sleeping but this time around he was pretty inconsolable and he found it difficult to find a comfortable position which resulted in 4 days and nights of fitful, sporadic rest.  His fever didn’t respond to the Motrin/Tylenol regimen so I took him to see his pediatrician today for help.

It looks like Rudy is battling multiple infections…a viral infection for sure and 2 unrelated bacterial infections (ear and strep).  :(  He’s on amoxicillin now so hopefully it will start working on the bacterial infections quickly allowing his body to rest while the viral infection takes care of itself.  Rudy needs to be on the antibiotic for 48 hours before he can go back to school so maybe he’ll be able to return to school on Friday…to nurse Viviana and all his friends he’s missing!  :)

We sure appreciate prayer for complete healing and lots of much needed rest.  Thank you friends!!

So grateful for Nurse Jomana's care of Rudy the past couple of months...luckily she's still around and Rudy will get to see her when she comes to MntnView for other nursing duties.  Woo Hoo!!!  Thank you Jomana!!  :)

So grateful for Nurse Jomana’s care of Rudy the past couple of months…luckily she’s still around and Rudy will get to see her when she comes to MntnView for other nursing duties. Woo Hoo!!! Thank you Jomana!! :)

A Spring full of Super Stars!

April 21, 2015 by

I have to give a BIG SHOUT OUT to the man who has taken most of our pictures for retrieving our pictures after a computer snafu a couple of weeks ago!!!  Thank you Greg :)  It’s a huge relief to have IPhoto again and I’m back in “blog” action with a series of fun photos from this month.  I’ll let the pictures do the talking…

(Easter included a great outdoor church service in the am and the traditional Easter Basket Hunt in the afternoon followed by a fun bbq with friends in the evening!)

Four Rock Stars setting the stage for Easter morning worship!!  You'll be seeing more of Jeremy and Aaron later this spring as they are both marrying their sweethearts and Rudy is invited!  Ha Ha

Four Rock Stars setting the stage for Easter morning worship!! You’ll be seeing more of Jeremy and Aaron later this spring as they are both marrying their sweethearts and Rudy is invited! Ha Ha

 Olivia and Rudy getting ready for the Annual Geyling Family Easter Basket Hunt!

Olivia and Rudy getting ready for the Annual Geyling Family Easter Basket Hunt!

Easter BBQ fun with the Essigs!

Easter BBQ and pool fun with the Essigs!

(Wilson hit a MAJOR milestone birthday this month!!!)

Wilson hit a MAJOR milestone birthday this month!!!  Woo Hoo!  Happy EIGHTEENTH Birthday Big Boy! 4-9-15

Woo Hoo! Happy EIGHTEENTH Birthday Big Boy! 4-9-15

Birthday sparklers…thanks to Bob and Michele Fitch!  :)

Birthday sparklers…thanks to Bob and Michele Fitch! :)

(April has been a month filled with celebrity encounters…)

The big kids had the opportunity to usher at a recent Fellowship of Christian Athletes event featuring Bethany Hamilton!  Olivia was particularly thrilled as she is a super fan of "Soul Surfer" and Bethany's story!

The big kids had the opportunity to usher at a recent Fellowship of Christian Athletes event featuring Bethany Hamilton! Olivia was particularly thrilled as she is a super fan of “Soul Surfer” and Bethany’s story!

That same night, Rolf and the big boys attended John Foreman's concert (lead singer of Switchfoot)…the boys were pretty thrilled at the VIP meet and greet following the concert!

That same night, Rolf and the big boys attended John Foreman’s concert (lead singer of Switchfoot)…the boys were pretty thrilled at the VIP meet and greet following the concert!

A son of friends of ours is a cast member on the current season of Survivor…Tyler Fredrickson joined his family here in town and friends for a viewing party last week…poor Maxo missed it because of a Lacrosse game but Wilson and Livy got to go!  So fun!

A son of friends of ours is a cast member on the current season of Survivor…Tyler Fredrickson joined his family and friends here in town for a viewing party last week…poor Maxo missed it because of a Lacrosse game but Wilson and Livy got to go! So fun!

The following morning, our local abc news outlet came to the house to interview our family about Rudy's 2013 Wish Trip.  They are featuring Rudy's story for an air miles drive this week!  The big kids were AMAZING.

The following morning, our local abc news outlet came to the house to interview our family about Rudy’s 2013 Wish Trip. They are featuring Rudy’s story for an air miles drive this week! The big kids were AMAZING.

Livy tried her hand at hard-hitting reporting!

Livy tried her hand at hard-hitting reporting!

The boys were a tough interview!

The boys were a tough interview!

Meteorologist Meredith Garofalo and camera woman Joyce were super fun!

Meteorologist Meredith Garofalo and camera woman Joyce were super fun!

We enjoyed hosting our annual teacher appreciation dinner with a handful of the kids' teachers and their families…once again, GREAT people…SUPER STARS in our book!

We enjoyed hosting our annual teacher appreciation dinner last week with a handful of the kids’ teachers and their families…once again, GREAT people…SUPER STARS in our book!

Rudy's Kindergarten teacher Mr. Casady captured this little treasure during science class a couple of weeks ago.  :)

Rudy’s Kindergarten teacher Mr. Casady captured this little treasure during science class a couple of weeks ago. :)

(We saw a whole stadium full of super stars on Friday at the Special Olympics track and field event in Santa Barbara!  It was such a fun morning with lots of special friends…)

Opening Ceremonies.  Go Mountain View Cougars!

Opening Ceremonies. Go Mountain View Cougars!

Special friends Omar and Natalie.

Friends Omar and Natalie.

SUPER special Kyle and his Mama & baby sister.  :)

SUPER special Kyle and his Mama & baby sister. :)

Rudy wasn't too keen on the loud, crowded event…his 25m unassisted walk event kind of turned into the 3 foot drag (ha ha ) but he finally crossed the finish line!...

Rudy wasn’t too keen on the loud, crowded event…his 25m unassisted walk event kind of turned into a 3 foot assisted drag (ha ha ) but he was a good sport, finally crossed the finish line!…

…and made it to the podium!  :)

…and made it to the podium! :)

Rudy made it to the podium for a bronze ribbon.  :)

Rudy's class!  Way to go K-1 Cougars!!!

Rudy’s class! Way to go K-1 Cougars!!!

Post Special Olympics fun with Bob…in the trampoline, of course!

Post Special Olympics fun with friend Bob…in the trampoline, of course!

Drum Captian Wilson promised the drum line that he would wear his competition uniform to school if they made it to the Championships…yep, they made it!  Ha Ha

Drum Captian Wilson promised the drum line that he would wear his competition uniform to school if they made it to the Championships…yep, they made it! Ha Ha  Winter Solstice, Baby!!!!!

Wilson's final HS drum line competition!

Wilson’s final HS drum line competition!

This spring marks the very first season of DP Lacrosse EVER!  So happy Max gets to participate in this history making milestone for DP Athletics.  Go Chargers!

This spring marks the very first season of DP Lacrosse EVER! So happy Max gets to participate in this history making milestone for DP Athletics. Go Chargers!

After much deliberation, Wilson has decided to attend Azusa Pacific University next year!  We are so thrilled for him…he's going to love college!

After much deliberation, Wilson has decided to attend Azusa Pacific University next year! We are so thrilled for him…he’s going to love college!

There are so many big things going on this spring…birthdays, weddings, spring sports, the “end of the school year” events we look forward to every year as well as all the “extras” of a graduating senior!  Rudy has a pretty long list of appointments too…we saw his neurology and GI specialists last week, we have an appointment this week with Dr. Harake (cardiology) and appts with the Endocrinologist, UCLA Dental Clinic and UCLA Heart Clinic in May.  Unfortunately, Rudy will be missing quite a bit of school due to the appointments coming up but our goal is to pace ourselves, stay focused and finish this school year WELL.  The countdown to summer is ON!!

My friend  took this amazing picture off the coast in Carpinteria last week…see the pretty silhouette of an angel in the cloud?  Thanks for sharing Kathy!!!!

My dear friend took this amazing picture off the coast in Carpinteria last week…see the pretty silhouette of a flying angel in the cloud? Love it!  Thanks for sharing Kathy :)

A Special Moment At The Special Olympics

April 18, 2015 by

Oh my, So many BIG things going on in the life of our family….sadly, I’m experiencing some computer problems and I may have lost my pictures from the past year (Noooooooo! Praying they can be retrieved). I’ll have to wait to post a longer update but for now I just wanted to post this precious moment I captured yesterday at the a Special Olympics. Rudy was NOT motivated to participate….especially with the large crowd of cheering spectators yelling on the sidelines. He did, however, perk up when he saw Coach Galvan (his Adaptive PE Teacher) and all of a sudden he was all smiles! Way to go Coach! Way to go Special Olympics!

Happy Easter! Wait…I mean, Merry Christmas?

April 3, 2015 by

Either Christmas came early for Rudy this year or the Easter Bunny has a HUGE basket in which to carry his goodies because Rudy hit the jackpot this week…so much so that even the big kids expressed feeling a little jealous!  Thanks to the Manning family and the dear folks at Kisses from Katie, Rudy was gifted his very own IPad with accessories and adapted therapy tricycle!!!

Apparently, a boy + an IPad = a big smile

Apparently, a boy + an IPad = a big smile

It didn't take long for Rudy to master peddling AND stirring!  He made his way around the high school track TWICE - a 1/2 mile - on his third venture out on his custom trike.  Amazing!!!

It took Rudy all of a 1/2 day to master peddling AND steering at the same time! On Day 3, he made his way around the high school track TWICE – a 1/2 mile.   Amazing!!!

We are deeply grateful to Kisses from Katie for choosing to bless Rudy so generously with equipment that is not only therapeutic and practical but also SO MUCH FUN!!!  The day after we got Rudy’s bike, Max, Olivia and I were on our bikes riding around in circles with Rudy in our cul-de-sac and for the first time EVER, we caught a vision of our family going on a bike ride alongside Rudy in our neighborhood.  It sounds simple and mundane but for a kid who couldn’t keep his feet on the peddles of a bike less than a week ago, it’s a miracle to see him riding independently with the extra support and peddle straps on his Rifton trike!  And for a kid who doesn’t have the fine motor skills to control a pencil or manipulate a computer screen with a mouse, it’s a miracle to watch him effortlessly navigate touch screen technology and play alphabet games on an IPad!  We are confident this equipment will help Rudy progress developmentally in addition to bring him great joy.  Thank you Kisses from Katie…thank you Alan and Vickie…thank you sweet Katie Manning whose precious life we are reminded of every day! We are humbled!!

Thank you, too, for the sweet comments and prayers and expressions of encouragement I’ve received since my last blog post!  It’s definitely a daily challenge to keep things in perspective but the outpouring of love and encouragement is certainly a blessing.  Having a week off from school and therapy and dr. appts this week has been good for my soul…wish we could extend spring break just a little bit longer.  :)

Here are a few more highlights from the past couple of weeks…

A visit with cousin Josh from Alabama helped kick off the official start of spring with lots of laughs and tackles!

A visit with cousin Josh from Alabama helped kick off the official start of spring with lots of laughs and tackles!

Max and Rudy deep in car ride conversation.

Max and Rudy deep in car ride conversation.

Wilson's late night return from a college visit…1st stop?  Steal a hug from a sleeping Rudy.

Wilson’s late night return from a college visit…1st stop? Steal a hug from a sleeping Rudy.

Kyle's Kitchen is becoming quite the neighborhood hangout…We ran not into Rudy's big buddy, Natalie, from school and, of course, Kyle and his sister during our last visit!  Yum!!!

Kyle’s Kitchen is becoming quite the neighborhood hangout…We ran into Rudy’s big buddy, Natalie, from school and, of course, Kyle and his sister during our last visit! Yay!!!

It was "all hands on deck" yesterday for the SBRM Easter Feast.  Wilson, Max, Olivia, SBRM staffer Olivia and two guests created an impromptu worship team that rocked it in the courtyard!...

It was “all hands on deck” yesterday for the SBRM Easter Feast. Wilson, Max, Olivia, SBRM staffer Olivia and two guests created an impromptu worship team that rocked it in the courtyard!…

Rudy entertained the guests on the other side of the courtyard with his game of hide & seek with SBRM staffer Jill!

Rudy entertained the guests on the other side of the courtyard with his game of hide & seek with SBRM staffer Jill!

Well, I guess it’s time to get ready for our Good Friday service at church.  I’m grateful for the special emphasis of Holy Week in the Christian calendar…from Palm Sunday to Maundy Thursday to Good Friday and then Easter…focusing on Christ’s willingness to suffer on my behalf certainly helps put my struggles into perspective…light and momentary in the eternal scheme of things for sure.  :)  May your struggles feel a little less daunting today too.  Many Blessings to you dear friends.

Well Hello Again!

March 19, 2015 by

It has been awhile…I’m not sure I’ve gone this long without publishing a post.  I’ve been trying to figure out why.  Yes, we’re busy but we’re always busy.  Yes, there isn’t much to report on Rudy’s status but we’ve been in limbo for 5 years now and that hasn’t stopped us from posting.  We started this blog to keep our family and friends up-to-the-minute with medical details when Rudy was first diagnosed, when we brought Rudy home from the hospital we kept it going to keep our readers engaged until Rudy’s next surgery which we thought was just weeks away and then the blog morphed into this amazing therapeutic practice that seemed to help me process, clear my head and keep a balanced perspective on things in general. It ceased to be for others at some point along the way and really came to be a helpful record of the journey for our family…and the posts came easy…I never forced it just to get something posted.  So, I guess I’ve been waiting for there to be something to say.

To be honest, this has been a tough winter for me emotionally.  I think I’m battling fatigue and maybe a little depression which has left me unmotivated to process and post (who wants to read about my pity parties).  Even though Rudy is doing GREAT and  he is happy, the weight of his situation has been hard to carry recently for some reason and I’ve withdrawn emotionally.  I’m not quite sure what’s going on but I could use prayer for my fear to be wiped away and my sadness to be lifted.  I keep telling myself that there will be time for all that if things go south so, for now, I want to be 100% present in the moment and not allow my fear or anxiety to steal anything away from what we have now.  I need renewed vision, I think.  :)

We were able to connect with Dr. Harake after missing Rudy’s scheduled appointment last month and all looks the same.  After Rudy’s echo, etc we had our typical “big picture” discussion that is always this odd combination of being both sobering and reassuring.  It is usually a pretty clinical discussion about our lack of options at this point and why it is important to be patient and wait even though our human nature wants to be “doing something” to fix it.  So true.  But this time Dr. Harake said the sweetest thing…after an appointment where Rudy babbled non-stop, told Dr. Harake his knock-knock jokes, showed off his mad walking skills and flashed his BIG, BRILLIANT smile every few seconds, Dr. Harake said in closing as he packed up Rudy’s file…”There isn’t any surgery we can do that would make him any happier.”!  I don’t know, it just struck me as a very thoughtful observation and a truth to hang onto for sure.  Rudy’s quality of life (as well as the big sibs’) has always been our focus in the choices we’ve made throughout this whole journey so far and his happy, funny, full of life approach to each day brings us GREAT joy and comfort but…there is a deep, throbbing pain I carry in not being able to “do” something for Rudy that’ll take all this away from him & us which is why things like Dr. Harake’s comment or the process of writing posts help me keep it all in perspective and not get stuck in some pretty dark places.

Since our cardiology appt, Rudy had another seizure episode (first one that we know of since late June 2014) and then fought hard against a tenacious bug that kept him home from school for a few days…it was weird because his body was able to ward off the usual symptoms of a high fever and diarrhea but he was definitely “off” in his ability to focus & maneuver his body and he lacked his usual stamina.  :(  He seems back on track now and we’re gearing up for his quarterly round of appts with the gastroenterologist, endocrinologist and another heart clinic visit in April at UCLA.

Our family has made the switch from winter to spring activities…Olivia decided to play club soccer this spring and has enjoyed getting to know her new team and coaches the past several weeks at practice. Her tournament schedule began a couple of weekends ago and she’s having fun.  Max has been juggling two sports this winter as his hockey season began to wind down and the high school lacrosse season started to gear up with practices.  Now that hockey is over, he can focus on the DPHS Varsity Lacrosse team and their full competition schedule that started a couple of weeks ago.  Woo Hoo!  Rolf and I are now proud members of the DPHS Athletic Boosters (to add to our DPHS Band Booster membership! Ha Ha) and I have some studying to do to figure out what in the world is going on during a lacrosse game.  (i.e. Why is a hard whack with the stick okay but an elbow nudge isn’t?)  During Max’s last game, I got caught up in all the excitement and found myself yelling “Whack ’em boys!… Go, go, go…Whack ’em!”…not quite sure how I feel about that.  Ha :)  Wilson?  Well, he continues to savor every school activity whether he is participating or spectating.  The drum line competition season is well under way and he & his drum line buddies play at as many school sporting events as they can to cheer for their friends and entertain the crowds.  It is so much fun watching him have so much fun!  :)

Spring break is less than two weeks away and then we will be in the lightening speed race to the finish of the school year (those last 2 months go SO FAST)!  As always, the goal is to pace ourselves and finish well…taking time to appreciate (i.e. the kids’  experiences, the teachers and staff investing in our kids and our growth as a family), to enjoy each other and  to capture memory making moments (especially as Wilson graduates)!  I guess it’s time for me to get out of my funk and get movin’!  :)

Here’s a little recap of the past month in pictures:

Got to celebrate my bday on February 27th with a walk on our neighborhood pier!

Got to celebrate my bday on February 27th with a walk on our neighborhood pier!

Got to celebrate it again with dear, longtime friends we hosted for Susie's retirement party!!  Woo Hoo

Got to celebrate it again with dear, longtime friends we hosted for Susie’s retirement party!! Woo Hoo 3-1-15

Olivia and Rolf made my favorite…carrot cake from scratch!! Yum!

Olivia and Rolf made my favorite…carrot cake from scratch!! Yum!

Got to celebrate Maxo on his 16th Bday at his favorite chinese restaurant! 3-10-15

Got to celebrate Maxo on his 16th Bday at his favorite chinese restaurant! 3-10-15

Now that the college acceptance letters have been received…the pressure is off and Wilson is enjoying a little more "down time" with Rudy this semester!  :)

Now that the college acceptance letters have been received…the pressure is off and Wilson is enjoying a little more “down time” with Rudy this semester! :)

Speaking of a little "down time"…Rudy convinced good friend Ric to join him on the trampoline during a SBRM dinner we hosted.  Rudy sure loves Ric and considering Ric climbed onto our trampoline (not an easy task), I think the feeling is mutual!

Speaking of a little “down time”…Rudy convinced good friend Ric to join him on the trampoline during a SBRM dinner we hosted last week. Rudy sure loves Ric and considering Ric climbed into our trampoline (not an easy task), I think the feeling is mutual!

Our new favorite hang out in town is Kyle's Kitchen…you should come visit us and we'll take you there.  Kyle (pictured here with Rudy) is a buddy from school.  His parents (successful restauranteurs here in town) opened this burger joint in Kyle's honor…every month they highlight a different local special needs program or organization and donate a portion of their proceeds to that organization!  Love this sweet family…Love Kyle…LOVE the food!!!

Our new favorite hang out in town is Kyle’s Kitchen…you should come visit us and we’ll take you there. Kyle (pictured here with Rudy) is a buddy from school. His parents (successful restauranteurs here in town) opened this burger/soup/salad joint in Kyle’s honor…every month they highlight a different local special needs program or organization and donate a portion of their proceeds to that organization! Love this sweet family…Love Kyle…LOVE the food!!!

We were blessed once again to participate in a Santa Barbara Rescue Mission graduation this past weekend.  Our family was honored to celebrate alongside 15 men and women who have been in SBRM’s year long alcohol and drug addiction recovery program.  Talk about putting life and God’s power to redeem any difficult, tragic situation into perspective!  A dear Rudy’s Beat reader and regular commenter participated in this graduation as our hostess and wrote an amazing reflection on her experience…Click Here to read Diana’s account.  Read it from start to finish. You’ll be blessed!

God bless you friends…God sure has blessed me in countless ways through you!

February Events

February 22, 2015 by

Here we are near the end of February already!  It turned out to be a full, emotion-packed month which is going to culminate with my 49th birthday the end of this week.  Yikes!!  Where did the month go?…Where did the last decade go?

Life got so full the past couple of weeks that I even missed Rudy’s cardiology appointment last week!!!  In the 6 1/2 years that we’ve been seeing Dr. Harake, I never missed an appointment…until now.  Thankfully his scheduler was able to squeeze us in tomorrow morning so we won’t be too late making it up.  :)

So, what was so distracting?  Well, we said “goodbye” to Rudy’s longtime school nurse a week and a half ago :(…Rolf and the big kids met me at the school for a little surprise send off with Rudy and his classmates.  It was a sweet time honoring Sara and welcoming nurse Jomana to the team.  Rudy is definitely adjusting but he is in good hands and we wish Sara GREAT success at the pediatric clinic!!

We're so grateful for Sara's tender care of our Rudy and ESPECIALLY for her friendship!  :)

We’re so grateful for Sara’s tender care of our Rudy and ESPECIALLY for her friendship! :)

Fun with Rudy's classmates.

Fun with Rudy’s classmates.

The official changing of the guard during a group hug with nurses Sara and Jomana!

The official changing of the guard during a group hug with nurses Sara and Jomana!

Thank You Sara!

Thank You Sara!

Wilson was one of nine DP seniors who was chosen as this year’s Trailblazer recipients and acknowledged  at the last basketball home game of the season…so fun for him.

2015 DPHS Trailblazers

2015 DPHS Trailblazers

Max’s first Varsity Hockey season ended with a win for a third place finish…

Woo Hoo SB Varsity Blue!  :)  P.S. SB Varsity Gold placed 1st!!!  SB Rules.  :)

Woo Hoo SB Varsity Blue! :) P.S. SB Varsity Gold placed 1st!!! SB Rules. :)

We’ve collected a handful of fun video clips this month that were too short to upload to Vimeo by themselves so I made an iMovie of them all together to make it long enough to upload!  (feeling very tech-savvy right now)  Enjoy!!!  (a video message from Rudy to Nurse Sara, an original rap by Wilson and Max, this year’s installment of “Will You Be My Valentine?” filmed by the big sibs on a ski lift at Big Bear on Valentine’s Day, Wilson and the DP drumline at the last Bball home game, Wilson and Max playing at FCA).

In addition, the big sibs got to go on a ski trip with their church youth group over the long President’s Day weekend, Rolf, Rudy and I hosted our sweet newlywed friends Sarah and Chris that same weekend and I had a speaking engagement & a couple of opportunities to sing this last week!  Special stuff!!  In the midst of all this goodness, Rolf and I were reminded of the severity of Rudy’s situation by a very interesting CDC research article. How it relates to HLHS is secondary to the original study focus but check out the survival rate chart at the end of the article…Click Here – CDC Article.  Although we genuinely look at our life as 1/2 full as opposed to 1/2 empty, it is shocking to see in black and white that HLHS has the lowest survival rate of all major birth defects!  Makes us EXTREMELY grateful for Rudy’s life and motivates us to pray, pray, pray!!!

Congenital Heart Defect Awareness Week

February 9, 2015 by

February 7-14, 2015 is Congenital Heart Defect Awareness Week and I’m always happy to spread the word about CHDs…especially when it involves a classroom full of friends and a fun craft!  :)

Rudy’s teachers gave me the opportunity to come to Rudy’s classroom today and share about CHD Awareness Week with his classmates.  The kids were great and I had lots of fun hanging with them for a bit.  Together we defined “congenital heart defect” and we talked about how important it is to learn about CHDs…i.e. to understand kids like Rudy better and to remind us to be “heart healthy”.  We ate blueberries (a heart healthy food) and made a CHD heart magnet to display at home.  Fun, Fun!

Olivia made me a new insert for my phone case this morning!   LOVE IT!

Olivia made me a new insert for my phone case this morning! LOVE IT!

Congenital Heart Defect Awareness Week 2015

Congenital Heart Defect Awareness Week 2015

Fun with friends at school :)

Fun with friends at school :)

Rudy showing off his "mended heart" magnet.

Rudy showing off his “mended heart” magnet.

Hugs and Love!

Hugs and Love!

Wishing you heart health and lots of love this week….


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