Archive for the ‘Videos’ Category

Happy Valentine’s Day 2017

February 14, 2017

The singing of the traditional Valentine’s Day song is getting harder and harder to produce with the kids scattered about but we managed to pull everyone together via iMovie to create this year’s “tech” version!  Happy Valentine’s Day everyone…’wishing you a whole year full of love and kindness!!!

2017

CHECK THIS OUT!  An unearthed treasure from 2003…never before posted on Rudy’s Beat!!!!!

2016

2015

2014

2012

2011

2009

2008

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You are loved…by us!

We. Like. Bananas. B-A-N-A-N-A-S!

February 9, 2017

It has been awhile since we updated on Rudy’s progress in oral feeds….in part because there hasn’t been much progress.  Rudy’s interest in food ebbs and flows so when he’s interested, we jump on it and when he isn’t, we let it go.  The tomato basil soup at Kyle’s Kitchen is still a big favorite and his go-to request at home is ranch dressing.  The “eating” that he does is limited to smooth textures that he can lick off a spoon or carrot stick.

Well, Rudy’s interest in food is flowing this week and while he was licking his ranch dressing at dinner last night, he requested banana.  Banana?  Rolf popped up right away and grabbed a banana and spoon from the kitchen and I got a spoonful of banana up to Rudy’s mouth before he could change his mind.  A couple of bites in and Olivia got some video footage!!!!…

This is significant because this is the first chunky texture he’s been able to swallow!!!!  Yay!  Baby steps may be small but they’re steps in the right direction…Go, Rudy, Go!

 

On The Road Again…Up With People Style!

August 3, 2016

Five years ago, I was gifted a surprise trip to Tucson to attend my 25yr Up With People Reunion…click here for more information about Reunion 2011!  Well, as hard as it is to believe, five years have passed already and last week marked my cast’s 30 year milestone!  Once again, Rolf and I packed our bags for what was sure to be another memorable trip.  What made this year’s experience even better than 5 years ago is the fact that I knew we were going so I had the pleasure of anticipating all the fun AND we made it a family road trip adventure!  So. special.

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On the road and ready for some fun!

It’s impossible to have an UWP encounter and NOT come away with a deep, deep appreciation for the unique experience I shared with 120 cast members/staff 30 years ago.  Looking back on our yearlong, international tour, I’m amazed at the depth of friendship then and thrilled by the genuine friendship we still share thirty years later!  Cast C ’86  had over 50 cast members in attendance at this year’s reunion (a remarkable turnout) and it was an absolute JOY to squeeze every moment of our 3 days together to hug, reminisce, hug, catch up on family news, hug, share heartaches, hug, celebrate the triumphs and, most importantly, laugh (oh, and hug some more)!!!!  😉  At one point, as Wilson and I walked back to our room after a late night cast meeting, he said to me “Mom, it’s so fun watching you have so much fun!”.  So. sweet.

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Cast C ’86 – 2016 Reunion attendees

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Uppie offspring in attendance this year!

The highlight of the reunion for me was, by far, introducing my kids to this special group of friends and vice versa.  I can’t tell you how many times a cast member came up to the kids and said “you don’t know me, but I know who you are because I stalk your family on Facebook”.  ha ha  As I expected, my kids fell in love with this crazy extended family of mine and Rudy was thrilled with all the extra attention!!!

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…a little love from Melanie…

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…and Maria…

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…and Annie O!

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Fun with John the BEST Cast Rep of all time!!…

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…and Danny the BEST tour bus driver (an honor shared with Floyd, of course)!

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“Uncle” Jim…

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…and “Uncle” Davey!

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Shinanigans with Mike…

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…and mischief with fellow offspring Alana and Hannah!

We managed to carve out some quality family time as well…

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Dance Party!!!

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Poolside BINGO (with Hannah too)!!!

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Once an Uppie, always an Uppie!

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“Beat of the Future”

After experiences like this, I can’t help but think about a prayer I prayed shortly after Rudy’s diagnosis and again after his open heart surgery when he encountered one set back after another…I prayed that he would live long enough to be known and that his life would be remembered!  🙂  That prayer continues to be answered…beyond my expectations.  I’m so grateful for the opportunity to introduce Rudy and the big sibs to another special international community in my life.  Already looking forward to more memory making moments at #35!!!

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Bye, Bye Tucson!!! We like your crazy cacti!!!

 

 

Cath Report

July 9, 2016

We sure appreciate all the prayers and good wishes, texts and phone calls yesterday.  We felt loved and supported and are so grateful.  Rudy’s heart cath went smoothly and we are pleased to report that there is some movement in a positive direction!

First, a little background:

Rudy’s heart surgery back on October 6, 2008 was the first of what was supposed to be a 3-step surgical process that would reconfigure the blood flow in and around Rudy’s heart to accommodate the absence of the two left chambers of his heart.  In that first surgery, Rudy received a shunt (Sano shunt) that connected his single ventricle to his main pulmonary artery to provide pulmonary blood flow (blood flow between his 1/2 heart and his lungs).  The Sano shunt was intended to be a temporary tool to sustain life long enough to get Rudy to the next step in the process known as the Glenn.  The Glenn typically happens between 3-5 months of age but because Rudy encountered so many setbacks after his first surgery, his Glenn was delayed.  For two years, Rudy was monitored closely with the expectation that the Glenn was just around the corner.  However, during a heart cath in October of 2010 (October 21st to be exact), it was determined that Rudy was not a Glenn candidate (or likely a heart transplant candidate as well) due to high pulmonary pressures (a.k.a. Pulmonary Hypertension).

In the nearly 6 years since that devastating cath report, Rudy has had 5 additional heart catheterizations to monitor those pulmonary pressures and help reduce the pressure on his half heart wherever possible through angioplasties, stent implantations and the coiling of collaterals that were beginning to spring up.  The goal was to keep blood flow moving as Rudy grew in size and mobility.  Although we have seen some improvement in Rudy’s pulmonary pressures over the years, the cath report was always the same…not enough improvement to move forward.  So, for 6 years, Rudy has been living in HLHS limbo…in a gradual process of heart failure with no options for treatment.

The reason for yesterday’s cath was to gather detailed information on the current state of his heart as there have been signs in recent weeks of factors in his heart worsening…i.e. high hemoglobin numbers detected in his monthly blood draws, an increase in tricuspid valve leakage detected in his bi-monthly echo exams and bluer lips/extremities in general.  The goal was to see if there is an intervention that Rudy’s body  can tolerate to relieve some of the stress being placed on his heart…ultimately buying him more time until a “longer term” solution can be reached.  Possible options that Dr. Dan discussed with us a couple of weeks ago included replacing the Sano shunt (5mm tube at it’s widest, intended for an infant) with something bigger, a tricuspid valve repair (not optimal as it is a highly invasive open heart procedure) OR possibly a modified Glenn.

7-08-16 Cath Report:

As Rolf mentioned in his quick post yesterday, the results of yesterday’s cath are better than we’ve allowed ourselves to hope for in the last several years.  Dr. Dan used the phrase “ridiculously good” a few times and we’re still trying to process what this really means for Rudy.  In a nutshell, the pulmonary resistance has fallen low enough (so low, actually, that Dr. Dan retested them a few times to make sure he wasn’t getting a false reading!!!) that, in theory, Rudy’s body could tolerate a Glenn procedure (where the Sano shunt is removed, the Superior Vena Cava is severed from the heart and attached directly to the right pulmonary artery and blood flow from Rudy’s body drains directly into his lungs for oxygenation)!!

Now, granted, this isn’t the ultimate destination…the Glenn is just one hurdle in this long journey of treatment but it’s thrilling to think we might just be able to give Rudy a chance to clear it and move on to the next phase.

For all the cardiology geeks out there, here’s a look at the actual images in our post-cath consult with Dr. Dan…it’s kinda cool because it gives a visual of some of the issues I mentioned above.  Unfortunately, Dr. Dan discovered that arterial access to Rudy’s heart through his groin isn’t possible…they’re all blocked so he gained access through his neck instead…not optimal but it got the job done.  He was able to balloon the Sano shunt (controlled blood flow) again and started to coil some collaterals (rogue, uncontrolled blood flow) but, as you can hear in the video, stopped because access through the neck was too difficult.

So, what do we do now?

Dr. Dan arranged the schedule so that Rudy’s surgeon was on site during the cath as well…this was helpful because they were able to look at the images and discuss the results right away.  We didn’t get a chance to talk to Dr. Brian ourselves but I think it’s fair to say that their initial feeling is the Glenn is back on the table.  The plan is for them to present this new information at conference (hopefully soon) with Dr. Harake and the team at UCLA and then we will have a longer discussion with Drs. Brian and Harake about specifics.  I suspect Dr. Harake will want to approach this conservatively and wait until the risk of not doing something outweighs the risks of the procedure itself (which we are on board with too) but I would also like to take some time to discuss the value of waiting vs. the value of moving forward while Rudy is strong in body and spirit.  As I thought about it on the drive home last night and more today, it just feels like, from a non-medical standpoint, Rudy is ready emotionally to move forward.  We’ll see.  Like-mindedness and discernment are key in the discussions ahead…we ABSOLUTELY PRAISE GOD for sustaining Rudy this far and trust His presence will continue to lift us all in the months ahead.

Pictures?  You bet!!…

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Rudy was all smiles when we arrived at UCLA around 9am…he asked us the night before if he could wear his “Lightening McQueen shoes” (actually slippers) and bring his LMcQ backpack and had all his treasures packed before bedtime! Ha Ha He was very proud strolling around the hospital hallway outside registration after checking in. 🙂

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Rudy took his paperwork from the registration office and handed it in when he reported to pre-op…like a pro!!

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Rudy going 70s retro with Mom’s makeshift headphone securer…Rolf wasn’t too sure about the look but I did get a couple of high fives for my ingenuity from nurses walking by!

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Goofing around with Dr. Sanjay during the pre-cath exam!

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The call to the cath lab…

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Rockstar Rudy!

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We couldn’t go beyond the red line but Rudy didn’t care…he was so chill!

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Rudy’s nurse in the PACU was from Ghana! When I told him Rudy has a Ghanian name – Kweku. George replied, “oh yes, baby boy born on a Wednesday”!! Exaaactly!!! LOVE IT! This was Rudy’s attempt at a smile at discharge…he was still quite loopy. 🙂

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Since Dr. Dan didn’t do any major interventions and because we got this drill down pat, there wasn’t a need to stay overnight for observation!!! Yay…we were free to head back to SB about 9pm. It made for a long day but we were happy to get back to Max and Olivia…and our own bed!

Rudy has instructions to lay low for a couple of days and he hasn’t been too motivated to do much today anyway…he’s a little sore and groggy still.  So, we’re going to have a lazy weekend and rest up in anticipation of a fun week of Vacation Bible School (VBS) next week at our church.

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You know Rudy’s wiped out when he falls asleep midday while chewing on a truck!

I can’t tell you how grateful we are that Rudy’s original cath date on September 6th was moved up.  Rolf and I consider it God’s grace to be spared a long wait for a cath that is typically preceded by a few sleepless nights.  We didn’t have time to get too anxious this week or brace ourselves for the “punch in the gut” report we’ve come to expect from Rudy’s caths.  Thank you, again, for rallying around our boy with your prayers and acts of kindness and for continuing to journey with us in the setbacks and victories.  God is doing some MIGHTY things, He’s worthy to be praised always and we’re glad you’re along for the ride!!  🙂

First Week of Summer!

June 17, 2016

Today is a hot and hazy day in Goleta.  The SB County wildfire that made the national news this week broke out in the canyons just north of us Wednesday afternoon.  The sundowner winds we get this time of year have aided in fanning the flames over the past couple of days.  There is little threat that the fire will make it’s way to us but it’s definitely blanketing our community with smoke and a thin layer of ash on everything.  We escaped the smoke and ash yesterday with a trip down to UCLA but we’re back home today and finding ways to keep busy inside.  It is beginning to heat up so we’re praying the firefighters are able to keep their ground and stay safe as the heat, high winds and drought conditions in our area make for serious hurdles in the fight against this wildfire…just the beginning of a long fire season ahead.

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I brushed the ash off my car this morning and then walked back out a bit later to run some errands to find this on my windshield…

So, our first week of summer has been filled with a few key medical appointments for Rudy and some fun too.  Cousin Josh (who is interning for Disney this summer) took time away from the “Happiest Place on Earth” to visit us for a couple of days.  Since we live so far away from both sides of our family, it’s always extra special when family visits.

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Fun with cousin Josh from Alabama!

Olivia’s 8th grade promotion celebration continued at church the following Sunday when the graduates from 6th grade, 8th grade, high school and college+ were recognized.  It’s still hard to wrap my brain around the fact that she’ll be in high school this fall.  🙂

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A big congratulations from Pastors Aaron and James. 🙂

We made two trips down to UCLA this past week.  Rudy had a thorough echo exam at the pediatric heart clinic last Thursday and had his check up at the pediatric dental clinic yesterday as well as a quick conference with Dr. Dan to discuss our plan for the summer.  The good news is that everyone involved in the discussions are in agreement.  Based on information from our bi-monthly appts with Dr. Harake here in SB and the echo results from our trips to the heart clinic at UCLA, there are signs (i.e. high hemoglobin levels, increase in tricuspid valve leakage, bluer lips & fingers in general, etc) that Rudy’s heart failure is progressing.  Everyone is in agreement that there is a need to take some stress off his heart and help it work more efficiently but the question remains whether or not the potential benefits of another open heart surgery are worth the risks.  As Dr. Dan put it yesterday, we could intervene and Rudy could do great and we’d be wondering why we didn’t do something sooner, or we could intervene and make things much worse.  Rudy’s condition may be worsening, but the concerns remain the same and I’m not sure if the pendulum has swung far enough to tip the scale in the opposite direction from where we are now.  Because there are SO MANY conflicting factors and SO MANY pieces to the big picture scenario that’ll be impossible to align “just right”, I’m trying to prepare my heart for the decision to move forward to be based more on faith than hard science…(note: not that this journey has EVER had “easy” hard science answers but one always hopes for it!)

Before making a decision to schedule an open heart intervention which could include a tricuspid valve repair, shunt replacement or modified Glenn, we need to get the cath scheduled…I’m still working to nail down a date.  The goals of this cath will be as they always are:  to measure all the pressures, possibly open up the existing Sano Shunt (controlled blood flow) and definitely coil more collaterals that continue to sprout like a roadmap (uncontrolled blood flow).

So here’s a quick recap of our day yesterday…

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Rudy’s view from the dentist’s chair!

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Rudy got a great report from the dental clinic! Good oral health feels like a major victory and we’ll take it! High Five Rudy!!!

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Next stop? Conference with Dr. Dan. Rudy was more interested in Dr. Dan’s badge than the computer keys. “Don’t let go Rudy!”

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Rudy’s heart on the big screen.

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Rudy the Rascal had the most fun snatching doctor badges as we talked.

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Once we were done with all the official business, the boys ditched the wheelchair and transported Rudy big brother style!

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We played a little elevator bingo…

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…and ran into nurse friends on break.

All in all, it was a productive day at UCLA and I look forward to getting the cath scheduled so I can piece together the rest of our summer.

Today our thoughts and prayers shift to Wilson as he prepares to leave for Fort Knox.  He leaves early tomorrow morning and will be gone for a month of ROTC cadet training.  We’re sure going to miss him around here but he’s excited. He’s a little nervous but knows he’ll be fine once he gets there.  ‘Praying for his safety and that it’s a good experience for him over all.

Thank you all for your continued prayers and encouragement.  God is good and gracious and loving and merciful and constant & my hope rests in Him…always…but especially when personal concerns swirl and thoughts of the broader concerns for our country and global community are on the forefront of my mind as well.  Love and blessings to you and yours dear friends!

 

 

 

 

Happy Valentine’s Day 2016

February 14, 2016

‘Wishing you all the happiest heart day EVER!!!  As is tradition, here is this year’s rendition of the Valentine classic…”Will You Be My Valentine?”! 

And a little walk down memory lane…

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2009

2011

2012

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Happy Valentine’s Day dear ones!

Bring it ON 2016!

January 10, 2016

I’m typically a “glass half full” kind of gal.  I am genuinely optimistic and can rein in my worries before they get too big (most of the time) but, as I’ve mentioned before, the start of the new year is tough for me…part of it is the post-Christmas blues but it has become more than that.  In recent years, it seems to be the time of year when my fears surface and feel the most aggressive!  There is this point in time, usually in the week between Christmas and New Years when time stands still and the joy & relief of a well-executed Christmas turns to fear over the coming new year…instead of anticipating great things and making helpful resolutions, anxiety over all the “what ifs” regarding Rudy builds and a heaviness sets in.  It’s a battle every year and I just get to the point where I say “bring it on”!  The year is going to unfold as it will…all the “what ifs” are out of my control and so…bring it on!

Luckily Oma was still around the week between Christmas and New Year which provided a nice distraction this year…

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A New Year’s Eve hike in the nearby butterfly grove..

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One last sunset in 2015!

We rang in the new year with New York at 9pm…

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…and again with California at midnight…

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First sunrise of 2016!

We were greeted this new year with a plumbing issue turned minor flood on January 1st!  Sadly, the clean up will require some demolition and rebuild over the course of the next several weeks…(Wait!  Did I say “Bring it on”?  Ok, maybe that’s just tough talk on my part.  I take it back.  Ugh!)…but the upside is we’ll have a lovely new guest bed/bath when all is said and done.

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Rolf in “water extraction” mode on January 1st before the emergency crew arrived!

The carpet got pulled and discarded right away and we had a couple of days to dry things out, shuffle stuff around and make a comfortable spot for our exchange student from Australia visiting for the week!  Thankfully James is easy going and hasn’t minded the mess…since we’re waiting for insurance claims and bids anyway, hosting James has been another fun distraction…we’ll hate to see him leave bright and early tomorrow! 😦

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Rudy wearing his new koala backpack and showing off a package of Tim Tams that James brought from Australia!

We took James to the new ice rink in town for a little fun not realizing how much fun there was to be had!!!!  The plan was for Rolf to skate with the kids for a little bit while Rudy and I watched and then we’d leave and let the big kids come home on their own later…

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Fun on the ice…

…but then Rolf asked the on-ice monitor if we could bring Rudy out on the ice and she said YES!

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Joy! Joy! Joy!

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Family fun for all!!!

Of course, Max made it the most fun!

We ended up staying 2 1/2 hours and only made it home a few minutes before James and the big sibs!  Ha Ha  We’re pretty much party animals!

So, Rudy can add another item to his long list of milestone accomplishments…ice skating, check!  Happy New Year Everyone!  May the “what ifs” of 2016 be minor and the blessings abound for all!  🙂

 

 

 

Merry Christmas 2015

December 26, 2015
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The California Geylings 2015

We are enjoying celebrating Christmas with each other and Oma visiting from Alabama.  The past couple of weeks have been a string of fun-fueled, high octane days and now the hustle and bustle has subsided…we are blessed.  We trust your holiday and Christmas celebrations were fun too and filled with things that bring you great joy.  The past several days have been filled with things that remind me how very far we have come in our journey together and how much we have for which to be thankful…

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I went to the district office for one last jewelry show and Rudy talked Coach Galvan into a game of Rock ’em Sock ’em Robots!!! Rich!!!

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Olivia was honored by the Club West Running Club at a luncheon on the 17th as the Jr. High Female Athlete of the year! My favorite quote of the day was when her coach shared that after her undefeated season he asked her “What is your running history Olivia?” to which she answered “I don’t have a running history. This was my first time running.” 🙂

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The athletic accomplishments kept coming when Rolf reached his goal of paddling 1000 miles in 2015!

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He had a welcoming committee on shore to help celebrate! 🙂

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Rudy and his former teacher Mr. Casady (wearing his festive “Rudy the red-nosed reindeer” sweater) on the last day of school before vacation! Woo Hoo!!

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First day of Christmas break was spent in Santa Maria watching Max play hockey…

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…one of Rudy’s favorite pastimes!

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Christmas fun with friends at home…

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…and at the movie theater watching Star Wars!!! (2nd time for me and Max…the last time I went to the movie theater more than once to see the same movie was probably the original Star Wars films! Ha Ha)

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Rudy sharing his trademark joy at the Rescue Mission Christmas feast…

…and helping his brothers sing “Run, Run Rudolph”…

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Good times with special people!

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Rolf and his mama 😉

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Christmas Eve

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Slumber party in Rudy’s room!!

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Christmas morning

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Christmas JOY!

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Our Christmas was made extra special with our dear friends the Drummonds, their daughters and husbands and the Fluitt family…and extra, EXTRA special with the appearance of baby Carter!

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Livy’s a natural with Carter

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Livy holding a pooping Carter

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Kid pic 2015

We welcome a little down time the next couple of days before the start of the new year…time to rest, regroup, reflect and anticipate the blessings of 2016.  Merry Christmas dear ones!  We are grateful you are a part of our family’s story.

 

A BIG BANG to the Start of Summer!

June 25, 2015

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!!

 

 

 

 

 

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!  🙂  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!!!