Archive for May, 2015

Ready to Wrap. it. UP.

May 30, 2015

Wouldn’t you know that after a warp speed spring, these last two weeks of school are going at…a…snail’s…pace! ¬†ūüôā ¬†School has kind of been a secondary activity with all the other special things going on¬†but there is light at the end of the tunnel with¬†Wilson’s Senior Sign-Out Day on June 5th, Max and Livy’s last day on June 10th and Rudy’s last day on June 12th! ¬†We are definitely ready to wrap up this school year and celebrate Wilson’s graduation with Grandma Jo, Oma and friends!! ūüôā

Rudy had another great dental check-up at the UCLA pediatric dental clinic last week. ¬†This is significant as Rudy’s oral health will be a key determining factor should he become a candidate for a heart transplant down the line. ¬†And since a cavity would require a trip to the OR, there’s even more motivation to brush, brush, brush those teeth! ¬†Rudy also saw his Endocrinologist this week and everything looks the same regarding his thyroid…no worse, no better. ¬†Dr. Hosono would like to take a closer look at Rudy’s growth hormone levels. ¬†Rudy is growing but at a very slow rate. ¬†It is likely a heart/O2/circulation issue and not a growth hormone deficiency but better to run some tests and find out for sure. ¬†With that, we have completed this round of routine check-ins with ALL of Rudy’s specialists!! ¬†Yay! ¬†We see Dr. Harake (cardiologist) again the end of June but everyone else we won’t see until November.

The big kids had a special opportunity over Memorial Day Weekend to go to a youth conference together with kids from our church. ¬†It has been a Memorial Day Weekend tradition for Max and Wilson the last several years but this was the first trip to Elev8 for Olivia. ¬†The kids joined 1700 others at Pt. Loma University in San Diego and had a GREAT time competing in fun events and connecting with friends made over the years. ¬†Wilson and Max entered the talent competition and won 1st place! ¬†As 1st place winners, they got to perform their song for all of the conference attendees. ¬†Thankfully their performance was captured on video…they put together their own arrangement of “Dark Horses” by Switchfoot with an original rap by Wilson thrown in the middle:

Olivia and her friends Cady and Jessica spent two afternoons working diligently on t-shirts for their ultimate frisbee team…the boys were wearing theirs when they won their medals! ¬†Ha ha

Looking good in OCJ original design t-shirts!

Looking good in OCJ original design t-shirts!

While the big kids were in San Diego, Rudy had some fun too with dear old friends in town for the day!  LOVE the Bradford/Burton/Di Lisio Family!!

While the big kids were in San Diego, Rudy had some fun too with dear old friends in town for the day! LOVE the Bradford/Burton/Di Lisio Family!!

Rudy also discovered the great fun and excitement of the Indy 500...he was mesmerized!  Yay!  The tradition continues...maybe we'll take him to see the real deal someday.

Rudy also discovered the great fun and excitement of the Indy 500…he was mesmerized! Yay! The tradition continues…maybe we’ll take him to see the real deal someday.

With the school year winding down, Wilson is receiving quite a bit of recognition which is wonderfully affirming for him but also a little embarrassing. ¬†I don’t mean to add to the embarrassment but wanted to record his accomplishments on Rudy’s Beat for safe keeping. ¬†What makes us most proud in Wilson is his upbeat, disciplined, others-centered approach to life and his genuine love for God. ¬†It’s such a blessing to know others see those traits in him as well.

During the DPHS Senior Award Night, a representative from the Army ROTC (Capt. Sacco) came to present Wilson with his 3-year Advanced Designee Scholarship (pictured here with Principal Carrey).

During the DPHS Senior Award Night, a representative from the Army ROTC (Capt. Sacco) came to present Wilson with his 3-year Advanced Designee Scholarship (pictured here with Principal Carrey).

Rudy was most impressed with Wilson's NHS and CSF cords!  Ha Ha

Rudy was most impressed with Wilson’s NHS and CSF cords! Ha Ha

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The following week at the DPHS Music Banquet, Wilson was awarded the John Philip Sousa Award by his band director...a high honor given for both musical excellence and character.

The following week at the DPHS Music Banquet, Wilson was awarded the John Philip Sousa Award by his band director…a high honor given for both musical excellence and character.

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Earlier in the school year, Wilson was one of 9 seniors at DP chosen as this year's Trailblazer recipients...an honor given by a committee made up of teachers, staff & administration to a student who is considered to be an "exemplary representative of Dos Pueblos High School in academics, athletics, leadership, clubs or simply being a spectacular individual". Each Trailblazer is interviewed and featured in the yearbook...here is Wilson's interview. You can zoom in on the picture to read it if you like.

Earlier in the school year, Wilson was one of 9 seniors at DP chosen as this year’s Trailblazer recipients…an honor given by a committee made up of teachers, staff & administration to a student who is considered to be an “exemplary representative of Dos Pueblos High School in academics, athletics, leadership, clubs or simply being a spectacular individual”. Each Trailblazer is interviewed and featured in the yearbook…here is Wilson’s interview. You can zoom in on the picture to read it if you like.

Yearbook Baby Ad :)

Yearbook Baby Ad ūüôā

Favorite activity this time of year?  Pouring over the newly released HS Yearbook, of course!!!!

Favorite activity this time of year? Pouring over the newly released HS Yearbook, of course!!!!

Finals?  What finals?

Finals? What finals?

Ok, We’ve cleared the final turn into the straight away towards the finish line…the checkered flag is in view!! ¬†Woo Hoo!!!

May Madness

May 19, 2015

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! ūüôā

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 boutonni√®res – 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

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 Рjust 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

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. ¬†ūüôā ¬†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! ūüėČ

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! ¬†ūüôā ¬†Happy Mother’s Day Friends!!!