WOWzers!

So, I’m just not sure we could have squeezed anything else into the last week and a half.  The out-of-towners have come and gone (accept for Oma who is staying one more week), Max’s weeklong celebration with his classmates is over, Olivia went to an out of town Lacrosse tournament and back, Rudy had a full week of medical appointments and Wilson made it home safe and sound from Ft. Knox, KY late last night after his month in Madagascar.  In between, there were pool parties and crazy antics and food (so much food!).  Needless to say, today is clear of any commitments so I’m staying in bed as long as possible.  😉

The months of senior activities and fun anticipation for the DP Class of 2017 culminated in last Thursdays graduation celebration…it was so fun to share the day with our out of town guests and hometown friends!

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Max with Oma and Grandma Jo.

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After graduation, we hosted a house full of friends to celebrate and it was rich.  Max’s godmother, who flew in all the way from Wichita, shared some beautiful scripture and words of affirmation & blessing AND Coach Mollkoy (for whom Max TA’d this year) had a special presentation too!  Max felt well celebrated and expressed his gratitude for all the love from family and friends on more than one occasion!  Yay!  So grateful!

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After all that, Rudy still had one more day of school…

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We’re not quite sure what Rudy did to deserve being in the “red zone” but it was clear the last week of school that he was DONE and ready for a break. Ha Ha
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Making slime with Ms. Ochoa was fun though!

Our church has an annual tradition of recognizing the graduates on “Graduation Sunday”…those promoting from 6th grade to Jr. High and from 8th grade to High School, as well as the High School and College graduates.  ‘So excited for this bunch!

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Love these kids!

One of the things I love most about our church is the “team effort” that goes into the investment of our youth…this certainly was demonstrated in the comments shared with (and about) Max during the service…well done, dear friends, thank you, thank you!!

We are so grateful to our moms and KS nephews and Max’s godmother for making the effort to come all the way to California for Max!  Their presence made all the celebrating even more special for sure…well done everybody and thank you, thank you!!

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My mom (Jo) and Rolf’s mom (Helga) with a quilt that was started by Jo’s mom (my grammie) and finished by Helga. LOVE IT!!! Such a gift from both moms in my life!!!
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Rudy lovin’ him some cousin time with Michael and Jonathan.
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Rudy and Susie-Q!
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The Wichita and Overland Park Kansans bonded over late night pool parties and…
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…bugging Max at work! 😉

Medical Update:

Rudy’s one-week break between the end of the school year last Friday and the start of summer school this coming Monday is almost over.  As it turned out, it was packed with routine dr. appts Monday through Thursday.  We still have neurology, cardiology and a trip to the dental clinic at UCLA coming up in a couple of weeks but we were able to check gastroenterology, orthopedics and the bi-annual visit to the heart clinic off our list this week.  The news from GI is that Rudy is losing weight and needs to bulk up a bit so an increase to his daily volume of Pediasure has been ordered.  Our appointment at UCLA’s heart clinic yesterday was exceptionally long (with a nearly hour long echo) but there isn’t any major change in Rudy’s heart function since December…a good thing!  The most surprising news this week came from the orthopedist who determined that Rudy no longer needs his braces!!!!  I didn’t see that coming AT ALL and it took me a few seconds to process what he meant.  Ha Ha  Dr. Early recommended we stop using the braces and track Rudy’s falls (an increase in falls may mean a return to the braces) but he suspects Rudy will grow in leg strength pretty quickly now that the calf muscle will be free to move and get exercised.  As a result, our day in LA yesterday included a trip to Famous Footwear for a pair of new shoes AND new sandals!!!!  Rudy is so proud!

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Speaking of LA, when we finished at UCLA, we stopped for lunch in Westwood and ran into the echo technicians who conducted Rudy’s echo…guess who elbowed his way into their lunch break?

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So, as always, there is much to celebrate and much to ponder.  In the meantime, we’ll continue to focus on quality time with family and friends and remember to breathe once in a while!

 

Spring Break Is Here!

It’s Sunday afternoon and there is a big sigh of relief over the fact that there is no school tomorrow or the day after that or the day after that…etc!  We have a week off from school, sports and therapy and we’re pretty happy about it.  Rudy got a head start on spring break as the Goleta Unified School District schools had Friday off as well.  Woo Hoo!!!  Actually, I’m not sure Rudy is all that thrilled about spring break.  He loves going to school and being with his friends!  😉  What a blessing it is to know he is in a loving and stimulating educational environment that he enjoys so much.

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Ms. Ochoa and aide Daniel joining Rudy in some Move-a-thon fun!
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Rudy and his typical classmates in Mr. Latta’s 2nd grade class.
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A big thank you to all who sent Rudy a $1 during his Facebook $1 school fundraising campaign!  He earned  “Big Paw Sponsor” recognition!!!!

Rudy showed great determination during his school’s annual Move-a-thon last week and he has shown great support on the sidelines of many DPHS Lacrosse games the past couple of weeks…with both Max and Olivia playing lacrosse this spring, we get the fun opportunity to go to twice as many games as in years past!  Rudy has even made himself useful as assistant clock-keeper…

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Keeping a close eye on the game with Dad…

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Rudy has been working hard on his sight words the past couple of years and began stringing them together to read simple sentences in recent weeks.  Ms. Ochoa started introducing phonics to him recently as well to see how he would respond and he is getting it!  Here’s a little sample of his progress that his teacher sent me:  (sorry the video is a little wonky)  

What a great reminder of how much fun it is to learn!!  🙂  Well, even though Rudy may not be desperate for some time off from school, I think the break this week will do us all some good.  Happy Spring Break Everybody!!

Happy Birthday…to me

As many of you noticed, Rudy’s Beat got hacked over the weekend so our apologies for any confusion.  We won’t ever post a link unless there is a clear connection to Rudy so be aware of vague, unknown links if it happens again.  🙂

Rest assured, this post IS from me!  Today is February 27th which means another month in 2017 has flown by as well as another YEAR in the life of me!!  Hello 51!

I was blessed to kick off my birthday weekend with a trip to one of my favorite cities!  We loaded up the van and headed down to San Diego on Friday for a special wedding celebration and for a quick visit to PLNU.    I lived in San Diego for only a couple of years before I married Rolf but I sure have a trove of special memories from that time in my life and relish any opportunity we get to visit…

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Max had a quick meeting with the co-chair of the music department at PLNU on Saturday so Rolf, Livy, Rudy and I enjoyed a little walk through campus while we waited…one of the prettiest campuses on our coast for sure!!
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Soon to be a Sea Lion!

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Love this boy!
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Rudy approves.
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It isn’t a visit to San Diego without a stop at El Indio!!!
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We were honored to celebrate with our friends Grace and Marlin (Rudy’s godparents) at the wedding of their son Luke and his lovely bride Hollie…precious!
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Rudy & Mr. and Mrs. VanNortwick
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Rudy and godmom Grace!
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Tearing up the dance floor with the big sibs…
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Waiting to send off the bride and groom…
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So long Van Clan! Thanks for all the fun!
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Wilson would have joined us if he hadn’t had a special event of his own to attend…He and his friend Leah enjoyed the 2017 Military Ball on Friday night!

Aw man, I could have extended our stay a couple of days but we got home in time to watch the Oscars last night and it’s back to the regular work/school routine this week.  Wilson comes home on Friday for his spring break so we have something special to look forward to.

Speaking of something special, Rolf was recognized at the SBRM Board of Directors meeting this month for his 10 years of service!  It’s hard to believe that Rolf started directing the work of the rescue mission ten years ago in January…we knew this would be a significant experience for our family when we relocated to Santa Barbara after our 15 years in Los Angeles but, of course, we couldn’t have imagined how truly rich life would become…even amid the heartbreak and challenge.  Our whole family has been shaped by our relationship with the dear people of the Santa Barbara Rescue Mission from the staff and residents and guests to the board members and volunteers!   How very grateful we are for this community as a whole and for the opportunity to minister alongside such amazing individuals.  Yay SBRM!!

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Medical Update:

Rudy had his routine echo exam with Dr. Harake on Thursday and, thankfully, there is no notable change in his heart size or valve leakage.  It remains at moderate – severe and his hemoglobin number is high but holding steady at 21.  As was discussed with Rudy’s surgeon back in December, there is no plan to act but Dr. Harake does believe the next issue we’ll need to address is Rudy’s shunt as he continues to grow.  It’s hard to visualize that all of Rudy’s oxygenated and non-oxygenated blood passes through a tube that, at it’s largest, is only 5mm wide:

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How long his original shunt can sustain his growing body’s blood flow remains a mystery but we applaud it’s stellar performance so far and pray that when he does outgrow it, doors for a next step will open.  Let it flow, Rudy!

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A beach outing in between our recent string of storms.

 

Happy Valentine’s Day 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!

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!

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

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!!  🙂