ALOOOOOOHA HAWAI’I!

July 3, 2015 by

We made it home from our special summer adventure in Hawaii and jumped right back into the work/summer school/therapy routine again.  It so easy to get swept up in the flurry of “to dos” so the challenge now is to hang on to a little of the laid-back aloha spirit and keep that spirit alive this summer whether we’re in a doctor’s office, working on a house project or shopping for groceries.  ;)

We are so grateful!  We’ve never attempted a trip like this before.  Before Rudy was born, our vacation time was used to visit our parents back in Kansas and Texas.  Since Rudy’s birth, our summer vacations have been limited to small-scale road trip destinations within California with the exception of Rudy’s Wish Trip (organized by the Make-A-Wish Foundation) and a rented-RV trip to Kansas to see my dad in the last months of his battle with brain cancer.  With Wilson heading off to college and the dynamic of our family’s daily life changing in the months ahead, it seemed like the right time for a big family trip.

When Rolf and I started to brainstorm several months ago, we entertained the thought of finding care for Rudy at home allowing us a very different experience with just the big kids but when we ran the idea by the big sibs they quickly protested and said we couldn’t go without Rudy!  :)  And so began the hard work of organizing logistics that fit Rudy’s special needs…ordering oxygen and enteral supplies for delivery on Oahu and Maui, renting vehicles big enough to haul Rudy’s wheelchair, getting the airline-required doctor letters of release for travel with O2 concentrator, gathering information on the hospitals near our accomodations, making sure the activities we signed up for were wheelchair accessible, etc,etc,etc.  None of it rocket science but definitely enough extra work in pre-planning that could cause one to think twice about going on such a trip.

Rolf and I had what we affectionately call “the honeymoon from hell” in Hawaii that we’ve wanted to redeem for a couple of decades now and our kids, Oma & Gma Jo have never been to Hawaii so we were all were pretty excited to experience new adventures and make some special memories together!!  Rolf did a great job of organizing an itinerary that included a few family outings, a special experience for each of the big kids and a good balance of down time at a condo right on the water.  Rudy’s body had a hard time adjusting to the heat and humidity of the islands so he spent a good bit of his time indoors initially which made our condo location ideal…allowing him to enjoy the beautiful view and the big sibs’ fun water play from the comfort of the air-conditioned condo!  :)

We started our adventure with 3 days in Oahu where we visited the USS Arizona Memorial, where Olivia got to swim with dolphins and where the big boys got to go parasailing…

En route from LAX to Honolulu!

En route from LAX to Honolulu!

Vacation Roomies Gma Jo and Oma!

Vacation Roomies Gma Jo and Oma!

USS Arizona Memorial

USS Arizona Memorial

"Thumbs up" from Rudy

“Thumbs up” from Rudy

While at Pearl Harbor, Rolf and the big boys toured the  "Mighty Mo" aka USS Missouri.

While at Pearl Harbor, Rolf and the big boys toured the “Mighty Mo” aka USS Missouri.

Some good ol' fashioned sibling fun at the hotel pool...

Some good ol’ fashioned sibling fun in the hotel pool…

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Thanks to current "rubber sleeve" technology in cast covers, Rudy got to go swimming too!

Thanks to current “rubber sleeve” technology in cast covers, Rudy got to go swimming too!

...And this is pretty much the view of every picture he took with the underwater camera.  Ha Ha

…And this is pretty much the view of every picture he took with the underwater camera. Ha Ha

Bucket List Dolphin Swim?  Check!

Bucket List Dolphin Swim? Check!

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Rudy just couldn't stay awake long enough to watch Olivia's swim with the dolphins :(

Rudy just couldn’t stay awake long enough to watch Olivia swim with the dolphins :(

Sea Life Park in Oahu...such a pretty locale.

Sea Life Park in Oahu…such a pretty locale.

We didn't get a picture of the boys parasailing but Wilson did capture Max getting blasted and almost swept to his death by this wave!

We didn’t get a picture of the boys parasailing but Wilson did capture Max getting blasted and almost swept away by this wave!

The gals enjoyed a lei-making class!

And the gals enjoyed a lei-making class!

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After a whirlwind three days in Waikiki, we packed up and flew to Maui where we planted some roots for a week…

Day 4 - Our flight over to Maui.

Day 4 – Our flight over to Maui.

Sadly, Olivia caught a fever and felt pretty awful on our travel day so she, Rolf and Rudy stayed home from the luau scheduled our first night in Maui :(.

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The big boys were good sports and participated in the "Keiki Hula" solely for a photo op!  Ha Ha

The big boys were good sports and participated in the “Keiki Hula” solely for a photo op! Ha Ha

Chillin' off the lanai...

Chillin’ off the lanai…

One of many beautiful sunsets from our condo...ah, lovely.

One of many beautiful sunsets from our condo…ah, lovely.

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Max the grill master.

Max the grill master.

Rolf's big treat was getting to step off the lanai and SUP anytime he wanted...thanks to a little El Nino, our side of the island enjoyed unusual swells this time of year.  Rolf was a happy camper!

Rolf’s big treat was getting to step off the lanai and SUP anytime he wanted…thanks to a little El Nino, our side of the island enjoyed unusual swells for this time of year. Rolf was a happy camper!

He also made arrangements with a local dude he met online to do a downwind run to Kihei...thankfully the guy was a legit SUPer or this could have been the last picture we have of Rolf.

He also made arrangements with a local dude he met online to do a downwind run to Kihei…thankfully the guy was a legit SUPer or this could have been the last picture we have of Rolf.

The road to Hana was a long and winding day trip but it definitely lived up to it’s reputation for being the most beautiful drive on the island!

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A last minute add on to the itinerary was a helicopter tour...Rudy and I hung back at the condo but the rest of the crew enjoyed this "once-in-a-lifetime" experience!

A last minute add on to the itinerary was a helicopter tour…Rudy and I hung back at the condo but the rest of the crew enjoyed this “once-in-a-lifetime” experience!

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Rudy's been working on "self care" in OT so while the others were out flying the friendly skies, I gave Rudy the tube of sunscreen and asked him to put it on...ha, ha!  Not bad Rudy!

Rudy’s been working on “self care” in OT so while the others were out flying the friendly skies, I gave Rudy the tube of sunscreen and asked him to put it on…ha, ha! Not bad Rudy!

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Although we played hard during the day, the evenings were reserved for hanging out on the lanai for impromptu ukulele concerts.

Although we played hard during the day, the evenings were reserved for hanging out on the lanai for impromptu ukulele concerts.

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Shhhh, I don't think we were supposed to sit on it but there was a carousel horse in the middle of our condo!

Shhhh, I don’t think we were supposed to sit on it but there was a carousel horse in the middle of our condo!

I LOVE pineapple bowls for some reason...I got a small one on our honeymoon and use it all the time...this one in our condo is the biggest one I've ever seen!  Ha

I LOVE pineapple bowls for some reason…I got a small one on our honeymoon and use it all the time…this one in our condo is the biggest one I’ve ever seen! Ha

There were a lot of activities Rudy couldn’t do on this trip but snorkeling wasn’t one of them…we took a family cruise out to Molokini and a sea turtle cove to snorkel and Rudy joined us on the second snorkel stop!

1st stop, Molokini crater…

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Then it was Rudy’s turn!!!!

Getting ready to launch!

Getting ready to launch!

One, two, three, GO!

One, two, three, GO!

Woo Hoo!!  Family snorkel pic!

Woo Hoo!! Family snorkel pic!

Olivia's underwater selfie.

Olivia’s underwater selfie.

Rudy loved his snorkel  float!

Rudy loved his snorkel float!

Rudy's view of the fish!

Rudy’s view of the fish!

The fish's view of Rudy.

The fish’s view of Rudy!

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Never thought our little half-heart would swim in the Pacific Ocean off the coast of Maui!

Never thought our little half-heart would swim in the Pacific Ocean off the coast of Maui!

Mother/Daughter

Mother/Daughter

Mother/Son

Mother/Son

Travel day back to the Mainland...Hawaiian Style!

Travel day back to the Mainland…Hawaiian Style!

We got to L.A. early Sunday morning and said goodbye to Oma at LAX where she caught a flight back home to Alabama.  Rudy started summer school at 7:45am the following morning…kind of a rude awakening for us but he was happy to see his friends   and Nurse Viviana again!  While Rudy was in school, Livy, Wilson and I took Gma Jo to the airport for her flight back to Kansas and after school, we all took Rudy to his ortho appt to get his cast removed!!  Keeping the spirit of the islands alive, we had an impromptu “castaway” party right there in the doctor’s office…

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“There ain’t no party like a ‘Castaway’ Party …..ooo, ooo, ooo!!”

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Tah-Dah!!!

Tah-Dah!!!

The next day we headed to Dr. Harake’s for Rudy’s routine check-up and Rudy was being “Mr. Helpful” during his echo exam…Steady, Rudy, steady!

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Rudy’s O2 sats were pretty low – low 70s – (he typically sats in the low 80s) so we’ll keep an eye on that as it could be a bad sign but everything else checked out okay.  No change in his heart size/function.  He was pretty tuckered out this week so I suspect it’ll take his body a few days to settle back to his normal baselines…I think we all may be experiencing a little vacation wear and tear, perhaps, but I think everyone would agree that our trip was well worth it!  :)  Aloha Friends!

A BIG BANG to the Start of Summer!

June 25, 2015 by

Our summer is well under way and we’ve had non-stop fun since the last day of school!

Wilson actually skipped HIS last day of school and our family headed south to attend the wedding of dear friends...

Wilson actually skipped HIS last day of school on June 5th and our family headed south to attend the wedding of dear friends…

Rudy hadn't quite mastered walking with his cast yet so he had to skip the dancing this wedding but he had fun celebrating Pastor Aaron and his new bride Paige nonetheless!!  Woo Hoo!!  :)

Rudy hadn’t quite mastered walking with his cast yet so he had to skip the dancing this wedding but he had fun celebrating Pastor Aaron and his new bride Paige nonetheless!! Woo Hoo!! :)

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Aaron and Paige are dear to our whole family...especially our kids and it is SO MUCH FUN celebrating special people in our life together!

Aaron and Paige are dear to our whole family…especially our kids and it is SO MUCH FUN celebrating special people in our family’s  life together!

Grandma Jo and Oma arrived a couple of days later in time for Wilson’s graduation on the 10th.  The 10th was also Max and Olivia’s long awaited last day of school!!!  Woo Hoo  We had lots going on that day!  :)

Goin' to get that diploma!

Goin’ to get that diploma!

Wilson was selected to give one of the student speeches during the commencement ceremony and it was, of course, a highlight of our day.   Rolf and I weren’t allowed to read it or help him edit it beforehand as he wanted it to be a surprise.  ;)  I’m glad we have a video and transcript of it because, in all honesty, it was hard to focus on what he was saying…all I could think about was how much he’s seen and experienced in his 18 years that has helped shape him…his early years in South Central Los Angeles as a missionary kid, going with the flow through several moves (and three elementary schools) until we settled in Goleta, the many hours he has spent at the rescue mission and, of course, being the big brother to Max, Olivia and Rudy (and the unique experiences/responsibilities that come with being the older sibling of a heart kid).  As Wilson shared his thoughts on “community” with conviction and confidence, all I saw was God’s grace in action…I have no idea to what extent God has extended grace to Wilson in his life so far but I do know without a doubt that there have been many crossroads in the life of our family where darkness and heartbreak could have overwhelmed his spirit but instead he has grown to be a young man confident in God’s love for him and in a greater purpose for life beyond himself!  So, so grateful and so motivated to pray for continued grace to be poured out on him, Max and Olivia (& Rudy too) as the uncertainties of the future unfold in due time.

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What made me most proud listening to Wilson’s speech was knowing how whole-heartedly he believes in the power of community.  He demonstrates it in how he does life and he inspires me.

"The relationships you have with people and the way you maintain those relationships are what is going to matter. Whether revered or shameful that is the legacy that we will all leave behind."

“The relationships you have with people and the way you maintain those relationships are what is going to matter. Whether revered or shameful that is the legacy that we will all leave behind.”

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Rudy, the Grandmas and I had prime handicap seats!!!  Thanks for this fun picture Kathy!!!!

Rudy, the Grandmas and I had prime handicap seats!!! Thanks for this fun picture Kathy!!!!

Rudy sporting a limited edition Wilson button :)

Rudy sporting a limited edition Wilson button :)

 

Graduation Family Pic!

Graduation Family Pic!

After graduation, we hosted an open house to celebrate and over 60 friends came!

After graduation, we celebrated some more with 60+ friends at our home.

We were so grateful to share the evening with friends from church, the neighborhood and the rescue mission!!  :)

We were so grateful to share the evening with friends from LA, church, the neighborhood and the rescue mission!! :)

Our good friend Bob and Wilson's god-father shared a few thoughts and a prayer.

Our good friend Bob (and also Wilson’s god-father) shared a few thoughts and a prayer.

Rudy getting some help signing the guest photo mat :)

Rudy getting some help signing the guest photo mat :)

Rudy's buddy Kyle and his family joined our graduation fun!!

Rudy’s buddy Kyle and his family joined the graduation fun!!

After all that, Rudy still had two more days left of school (Livy even went with him one day to help in his classroom)…he wrapped up his first year at Mountain View on Friday the 12th!  We are so grateful for his successful and super fun first year in Kindergarten…our thanks go out to his teachers Mr. Casady and Miss Avedissian and his nurses Sara, Jomana, Viviana and Karen who all contributed in BIG ways to his adjustment to a new school and his progress!  Way to go Team Rudy!!!

Rudy's last day of school!!

Rudy’s last day of school!!

Thank you Nurse Viviana!

Thank you Nurse Viviana!

Rudy has had a little break and will head back to school for the special ed “extended school year” program next Monday.  Although the summer program is less structured than the regular school year, it helps keep the momentum of Rudy’s progress going and Nurse Viviana will be there to maintain continuity in his care.  Rudy will enjoy seeing Viviana and some of his friends again!

 

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Once all the graduation festivities came to an end, we put the two grandmas to work as we got everyone organized for a big family trip to Hawai’i!!!  Yep, we decided to bite the bullet and make this trip happen (with grandmas in tow too) since this will likely be the last opportunity we’ll all have to travel together like this.  It took months to plan and Rudy has had a bit of a tough adjustment to the heat and humidity of the islands but all in all the hard work and effort in getting our family to Oahu and Maui has been worth it.  Talk about starting off the summer with a big bang…it’ll be hard to top this but we have a whole summer ahead to look forward to.  I’ll post some fun pics of our adventure when we return in a few days.

Aloha and “Happy Summer” everyone!!

 

 

 

 

 

Not Exactly What I Meant

June 1, 2015 by

So, when I posted on Saturday that we were ready to “wrap it up”, I did NOT mean this literally.  As luck would have it, Rudy had a little mishap on Sunday afternoon that resulted in a trip to the ER and a linear fracture in his left tibia.  His leg got wrapped up nice and snug until we could get him to the ortho today.  We just returned from Dr. Maguire’s office and, yep, he broke his leg!  Fudge!  Poop! DAAAARN it!  Aside from the fact that it’s just plain sad to see a little boy in a leg cast at the onset of summer, we’re actually scheduled to take a looooong awaited family trip to Hawaii in a couple of weeks and Rudy’s cast has to stay on for 4 weeks…no ocean fun for the 1/2 heart in Hawaii.  :(  Boo Hoo…not sure he cares but the rest of us are sad for him.  :( :( (double sad face!).  Prayers for patience in the healing process are greatly appreciated.  The cast wasn’t on for 30 minutes before he started to point to it and say “Off, Mama, off”.  Lord have mercy (this I mean literally)…could be a long four weeks.  Hang in there Super Rudy!

Actually kind of comforting to be in the ER and NOT be treating a heart related issue.

Actually kind of comforting to be in the ER and NOT be treating a heart related issue.

Still smiling!

Still smiling!

Rudy was feeling a little snuggly after his trip to the ER which excited Olivia because he doesn't normally sit long enough to cuddle!!

Rudy was feeling a little snuggly after his trip to the ER which excited Olivia because he doesn’t normally sit long enough to cuddle!!

That wasn't too bad, right Rudy?

That wasn’t too bad, right Rudy?

Kinda wiped out for now...

Kinda wiped out for now…

Ready to Wrap. it. UP.

May 30, 2015 by

Wouldn’t you know that after a warp speed spring, these last two weeks of school are going at…a…snail’s…pace!  :)  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!! :)

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 :)

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 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!


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