Random Stuff…and Rio.

August 13, 2016 by

To say life has been a bit of a whirlwind the past couple of weeks would be an understatement…

…Rolf jetted off to Rio (Yep, I said Rio!!) 10 days ago to watch our goddaughter compete in the Olympics, Wilson headed down to Azusa for a couple of days to practice with his fellow campus worship team members for this next school year, Olivia trotted up to Mammoth with the DPHS XCountry team for a week of altitude training and Max has been working double shifts at Kyle’s.  Rudy and I?  Well, we’ve been holding down the fort at home and enjoying a few last minute visits with friends from LA and Orange County.  The fun doesn’t stop there though?  Rolf’s mom flew in yesterday for a couple of weeks, I’m headed to KS next week to visit my mom and the big kids start school the day after I get back!!!!  The end of summer is closing in fast!!  Boo Hoo…this mama is never ready for summer to end!!!

Our family will all be back under one roof tomorrow and the rest of us are eager to hear all about Rolf’s Rio Adventure…I’ll refrain from sharing too much about it now and let Rolf tell his own story but I will say that the highlight of the Olympic coverage for me the past 10 days was watching (our goddaughter) Maya’s response to each success she had…she swam four events, she won four medals (bronze, silver and 2 gold) and each time she was interviewed, she communicated gratitude for the experience and joy over Team USA’s overall success.  She thoroughly enjoyed the personal experiences she was having but always presented herself as a team player.  She was simply delightful to watch and I’m so proud of every expression, every gesture, every move I saw her make in this once in a lifetime opportunity…that’s a pretty remarkable thing to be able to say.  Congratulations Maya!  And THANK YOU…for representing well and glorifying God in the process!

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Rudy cheering loud for Maya at home!!!

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The Geyling family representative in Rio with 4-time Olympic medal winner Maya DiRado!

Soooo, now, it’s time to regroup, refocus and wrap our brains around the start of school…in less than two weeks.   Rudy has some big adjustments ahead.  He will be moving up to the next special ed day class at his school with a new teacher and older classmates, he will go from mainstreaming in a Kindergarten class to mainstreaming in a 2nd grade class and, most notably, he will have a new caregiver.  :(  Dear Nurse Sara accepted a position at our local hospital over the summer and won’t be returning to Mountainview.  We are so very thrilled for her but she will definitely be missed.

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Some summer fun with Nurse Sara!

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High 5 for being a GREAT NURSE!!!🙂

With all that is going on at the end of our summer break, I won’t have the time to prepare our family for the start of school as I typically do so I’m praying now for prepared minds and hearts and all around good adjustments for all the kids.  Olivia and Max start classes at the high school (9th and 12th grade) on August 22nd, Rudy starts 2nd grade on August 24th and Wilson heads back to APU on the 25th.  (Big sigh!)  Oh well, summer was fun while it lasted!

Medical update:  We haven’t had any follow up with Rudy’s docs since last month’s cath so another BIG ITEM on my TO DO list when I get back from Kansas is to connect with Dr. Harake and hear his thoughts on the cath report.  As I mentioned before, I suspect we won’t be moving forward with surgery quickly but it’s important to keep the group discussions going…there is still much to process.  We sure appreciate your continued prayers!!!

Thank you and bless you friends!

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Just because…this picture makes me smile!!

On The Road Again…Up With People Style!

August 3, 2016 by

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!!!

 

 

Rudy’s Summer Break!

July 26, 2016 by

Rudy’s summer school session ended last week so he is now officially on summer break!  Woo Hoo!!!  He recently discovered the joy of Mario Kart on Wii and has become a video game junkie the last couple of days…aaaah summer!  Rudy has actually REALLY enjoyed being home with nothing to do but play video games and swim.  We pushed him pretty hard the week after the cath as he had his regular school/therapy schedule AND Vacation Bible School at our church each evening AND we decided to cap off the week with a day at Disneyland to visit cousin Josh!  Although Rudy wasn’t a particularly willing participant in any of it, he ended up going with the flow with a little encouragement and we made some fun memories nonetheless…

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Rudy on “Sea Creature” night at VBS!

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Doin’ Dland with cousin Josh!!! Rudy wasn’t too keen on the crowds but the rest of us had a blast…

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We did, however, get him to smile with Mater!

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Our new favorite attraction is the Animation Academy in California Adventure…so. much. fun.

We made it home from Disneyland in time (with TWO hours to spare) to see Rolf off to the airport for a business trip to Chicago and then we had a day to get ready for Wilson’s return from Ft. Knox.  His month of training was full and grueling and challenging but he felt good about it in the end and was almost as happy to be home as we were to have him home…;)

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Wilson’s CIET Graduation…he’s the second one in on the first row. Ft. Knox, KY

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Somebody’s super happy to have his roommate back!

In the week that Wilson has been back Rolf made it home from Chicago, we hosted 18 graduates of the SBRM Residential Recovery Program for dinner, celebrated their accomplishments at a standing room only graduation event on Saturday night and enjoyed quick visits with dear friends from our days in South Central a couple of lifetimes ago…what a rich, RICH week…full of big doses of hope and reminders of God’s grace over and over again!  We have about a week and a half all together before different members of the family jet-set off in different directions so we’re taking advantage of EVERY minute and soaking up some good family time.  Happy Summer Rudy!!

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A couple of dapper dudes at the SBRM graduation.

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The photo credit for this little gem goes to Dale Weber! LOVE it!!!

Cath Report

July 9, 2016 by

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!!  :)

All done!

July 8, 2016 by

Got buzzed shortly after the last post and figured it would just be the lab giving a status update. Discovered Dr. Dan was ready to give his report. No time to elaborate on that but the term “ridiculously good” was used repeatedly.  Not used to hearing that in a cath conference, so we’re a little bewildered.

We just got back to Rudy in recovery.  Leave it to the little champion to be here smiling and making little pig snorts as he comes out from under anesthesia! If things keep going smoothly we should be on our way home tonight. 

Checked in, Rolled and waiting 

July 8, 2016 by

A brief update while we’ve got time to post:  we had a 9am check-in here at UCLA so we were glad to be spared having to roll in the wee hours. We opted for the slightly longer drive down the coast (as we often do) as it just feels like a more peaceful start to a day like today. 

Demonstrating his ability to get excited about anything, Rudy asked repeatedly if he could bring wear his McQueen backpack and slippers to the hospital (and wore them for hours last evening after packing his toys).  Walked into the hospital like a boss. 


After check-in we moved to pre-op and got check-ins from the docs and kept Rudy occupied until they rolled him to the lab just before 1pm.  Gave us a thumbs up before he went through the doors:


Been close to three hours and we expect it to be quite a while longer. We’re OK with them taking their time. Thanks for keeping Rudy in your prayers. 

The Rudy Filter

July 5, 2016 by

Our family loves the Olympics…whether it’s winter or summer, we look forward to watching them together on TV and making fun family memories simply in our spectatorship.  Our anticipation of the upcoming summer Olympics in Rio catapulted to stellar heights this past week as we watched our goddaughter qualify for Rio in THREE individual swimming events during the trials in Omaha!!  What a thrill it is to watch our dear friends experience a ride of a lifetime and how very proud we are of their trademark humility in the midst of a pretty intense Olympic culture!  Maya DiRado is a class act and will be a fun one to cheer for in the women’s 400m IM, 200m IM and 200m Backstroke!!

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All smiles at Maya’s wedding last year.

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photo credit: Maya’s aunt Kate😉

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So fun to watch our friends have an experience like this.😉

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We sent Rudy’s bib # from the Special Olympics to Maya before she left for the trials and I loved Max’s prophetic sentiment the best…clearly he had no doubt she’d make it to Rio.🙂 Good luck against the world Maya…no pressure!

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One of the best gifts Rudy has brought to my life (and has been so evident this week) is what I call “the Rudy Filter”.  It’s impossible to do life without my experience with Rudy intensifying it…the celebrations are bigger and the heartaches find their way to a greater purpose.  The experiences can vary drastically like watching Maya accomplish an incredible milestone on the world’s stage or hearing from Wilson while out in the middle of nowhere on a grueling training mission or watching Rudy’s determination when struggling to pick himself up after a fall, but the depth of what my heart feels from day to day is the same and I don’t take any of it for granted.  God continues to use the Rudy filter in my life to turn bitterness into gratitude and uncertainty into peace…and to make the joys even more rich!  ‘Such a valuable gift.  Thank you Rudy!

Speaking of rich joys, we had fun with our friends at the Rescue Mission yesterday.  The SBRM 4th of July BBQ is Rolf’s and my favorite SBRM celebration and the staff & residents did a fantastic job of creating a comfortable and festive event for the homeless in our community.  We missed Wilson dearly but we did get a chance to talk with him briefly during a break he had from his official cadet duties.  He has hit the halfway mark in this month-long army training camp and has just one more “in field” training for the next several days.  He sounded upbeat and is having a positive experience overall.  :)

Happy 240th Birthday America!!!  (photo credit – Dale Weber)

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4th of July at SBRM!!

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Maxo gettin’ creamed!

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I LOVE this picture!…

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…and this one…

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…and this one!  :)  Thanks Dale.

Later in the day, we stopped in to see Max hard at work.  We exceeded the entertainment budget this month with a few extra stops at Kyle’s Kitchen…just checking out the new hired hand in action:

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Rudy ordering his favorite Tomato Basil Soup from his favorite KK employee!🙂

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We LOVE Kyle’s Kitchen!!!

Breaking news!!  UCLA called last week to schedule Rudy’s cath and the first available date wasn’t until September 6th…I admit I was a little bummed because I had hoped to schedule it before school started up again…BUT there has been a cancellation and if we can get insurance to authorize it, Rudy’s cath will be THIS FRIDAY!!  Even though moving it up throws us into a bit of a frenzy, it eliminates a ton of stress waiting for a later date and I’m grateful.  Yay!!!  :)  We’ll keep you posted…

‘Lots to process but at the same time lots for which to be grateful!!

 

 

 

A Big Send Off and Reconnections

June 24, 2016 by

We said goodbye to Wilson last Saturday with an early morning drop off at the SB airport.  It took him three flights and a full day of travel to get to Ft. Knox, KY for cadet training that he texted is “real boot camp-style stuff”.  He arrived on base at 9pm, had a 3 hour in-take process, got to bed at midnight and was up to report for duty at 3:30am!!  He said he was happy to get any sleep at all as some of the cadets arrived on base at midnight and didn’t get to the barracks before it was time to report for the day.  He was allowed to call home on Father’s Day and we’ve received only a couple of texts but he sounds good and upbeat…ending each communication with “don’t worry about me”!  Ha Ha  I guess I’m not doing a very good job of hiding my concern for him but I am so proud of his attitude and his willingness to be challenged in this way.

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All packed and ready to go to KY!

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5am airport selfie!

The Sherpa fire continued to rage all weekend but the strong winds cooperated by blowing away from the populated areas of Goleta.  Rolf and Rudy took some time to watch the helicopter water drop refills happening near our home all day on Saturday.  We are grateful for the fire’s containment and the BEAST firefighters who worked it in record heat this past week!!

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A smokey sunset in Goleta!

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Blood Sun

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Rudy cheering on the firefighters!

We definitely felt Wilson’s absence on Sunday as we celebrated the big guy on Father’s Day.  Olivia and Max knocked it out of the park on Rolf’s traditional Father’s Day Tshirt and we had a nice celebration at church.  Although I love special days on the calendar set aside for celebrating, I don’t need Father’s Day to encourage me to appreciate Rolf as a dad more than I already do on a daily basis.  His commitment to his kids is evident in the many ways he chooses to connect with them and the countless ways he serves and provides for them.  He communicates his love directly and indirectly and demonstrates doing life with faith, humor and mad building skills!  :)  GRATEFUL!!!

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Happy Father’s Day!

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Rudy started summer school bright and early on Monday.  He had a great first week getting to know a new teacher and reconnecting with a big group of special ed friends he knows from the different classes he has been in over the years.  Nurse Jessica is filling in for Nurse Sara this summer and Rudy’s transition has been seamless.

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Summer school pick up with Nurse Jessica.

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Bye, Bye Rudy!

Speaking of reconnections, this has been a fun week of reconnecting with dear friends for our family as well!  I find that life often happens in extremes…in a week where my heart has been deeply burdened and entrenched with thoughts of Rudy’s situation and Wilson’s journey, I’ve also experienced the great joy of being with friends who love our family dearly and are BIG Rudy fans…good for the soul and good for putting Rudy’s amazing progress over the years in perspective.

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Our time with the Peters Family on their way through town was much too short but packed with encouragement nonetheless! Welcome back to the West dear friends!!

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Rudy’s adopted family from Ghana made a stop in Goleta to visit us while on a big US tour. Fred and Evelyn are friends from Rolf’s Fuller days and we’ve enjoyed a friendship across many miles over the years. What a joy it was to watch our kids meet for the first time and YOU KNOW Rudy loved all the extra attention. Rudy’s Ghanian name is “Kweku” (which means male baby born on a Wednesday). After a little African lesson, we decided to add to it…”Nanakweku” which means little prince born on a Wednesday. He sure felt like a prince this week with all the extra love from the Dimados.😉

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We are still waiting on Rudy’s cath date…’hope to get it confirmed SOON so I can piece together other summer plans before the summer gets away from us.  I’m starting to get a little nervous and need to balance what I WANT to get done with what NEEDS to get done. ‘Praying for peace today.   Peace to you and yours dear friends!!!!

First Week of Summer!

June 17, 2016 by

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!

 

 

 

 

Welcome Summer

June 8, 2016 by

Yay! Yay! Yay!  Today was Max, Olivia and Rudy’s last day of school and with that summer has officially arrived!  Rolf, Olivia, Rudy and I have an early departure for UCLA tomorrow morning so I’ll keep this brief but want to commemorate the day with a few fun pics…

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We enjoyed a fun visit with a good friend and Max’s godmother this week…Max shot up in height this year making him a whole head taller than Susie-Q!!!…

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…as are Wilson and Rolf! Ha ha

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Goofy Rudy!!

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Olivia’s promotion festivities began with a fun party at school on Tuesday…

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…and the 8th grade promotion ceremony on Wednesday!!!

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Dos Pueblos HIGH SCHOOL (Whaaaat?!?!) Class of 2020!

Because of Rudy’s trip to the heart clinic tomorrow, he had to say goodbye to his teachers and classmates today.  Mrs. Gallo’s class took time to send Rudy off with personal messages and Miss A caught it on video…so sweet!

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Happy Summer Rudy!!! With Miss A, Nurse Sara and the sibs!

Happy Summer to you too dear friends!!!  Let the fun begin!!!


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