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. 

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!!

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)

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:

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!!

 

 

 

We’ve been seeing so many fun graduation and end-of-the-school year celebration posts on FB lately that it feels like summer has begun for everybody BUT us…Max, Olivia and Rudy still have two, 4-day weeks to finish up but spirits are high and enthusiasm is building for the carefree days of summer ahead.  Olivia is particularly excited as she has the 8th grade promotion party and ceremony to look forward to her last week of school.  Max is busy wrapping up his coursework, doing some prep for his senior year AND interviewing for his very first summer job!!  Fun stuff!  After taking a week to decompress when he got home from APU, Wilson headed back to the car wash and has appreciated a couple of weeks of solid work (and the paycheck & tips that come with it).  I thought there might be a bit of an adjustment having Wilson back home again but life in the Geyling household hasn’t skipped a beat and it’s just great to be together…we’re enjoying the family fun for sure.

As is typical for us every May, there has been something significant on the calendar each day this month which has helped pass the time and keep us out of trouble.   A few of the highlights include…

As for Rudy:

I mentioned in our last post that Dr. Harake (SB) and Dr. Dan (UCLA) were discussing whether or not to schedule a cath this summer.  Dr. Dan felt it was important to discuss Rudy’s case with the team of docs at UCLA and revisit our treatment plan before scheduling another cath.  He called Rolf yesterday and rather than paraphrase, I’ll just share Rolf’s email to me below:

“Got a call from Dr. Dan at lunchtime today.  Since I was walking to a restaurant I scribbled notes but wanted to write out the substance here to make it as clear as possible.

 He wasn’t sure anyone had ever communicated back to us after their presentation of Rudy’s case at conference earlier this month.  He said it was a very thorough presentation and extensive conversation—not just a quick review.  He also said that his disposition going into it was not to do a cath anytime soon as there didn’t seem to be a pressing reason to do anything invasive.  That opinion changed with input from the other docs—Dan said he basically talked himself into doing a cath.

 To give perspective he said that, immediately after hearing the presentation, Laks wondered aloud why there would be any need for discussion—the next step is a Glenn.  He hasn’t had it and he’s blue.  That’s what needs to happen.  That’s when people around the table countered with Rudy’s history—even though that was a long time ago and he’s a very different patient, they would still view him as a very high-risk surgical patient.  Additionally, there would need be a huge cath to coil all kinds of collaterals to get him to where he needs to be for surgery.

 Dan doesn’t feel like that would be a good reason alone to do the cath.  The most pressing reason is the Sano—it’s extremely small.  It was sized for a newborn heart that’s grown and now sustains an active child.  Additionally, it continues to get narrowed by the usual tissue accumulation, etc.  This would be the most pressing reason to do a cath.  While they’re there, they would obviously want to get a good look at all the pressures and take care of some collaterals and anything else that might move Rudy toward a surgery.

 Probably the most pressing issue surgically is a Tricuspid Valve Repair.  They feel the leakage there is significant and impacting function of the heart.  If they were going in to do the repair, they would also have to take a good look at doing some kind of modified Glenn, but that again would be driven by really good information obtained via a cath.

 He said that he spoke to Bilal about all this and says there’s agreement.”

So, I’ll give Dr. Harake’s office a call on Tuesday and start the process of getting a cath scheduled some time in August,  I hope.

Although the “big picture” discussions the last 6 years have centered on whether or not to attempt the Glenn or, instead, focus our energy on the heart transplant process, the reality isn’t that straight forward.  It is becoming more and more clear to us that if and when Rudy becomes a candidate for any of the “big” surgical interventions,  it is going to require a process of preparation to get him ready whether it be a series of caths to coil a literal road map of collaterals that have sprung up or an open heart surgery to replace his Sano Shunt & repair a leaky valve.  It can feel a little daunting when you consider each step in the process holds it’s own set of risks and we’re not even talking about the BIG risks that come with the treatment goals we’re trying to get Rudy to ultimately.  It’s also hard to have these conversations when watching friends like Owen battle through those very risks as we speak.  Ugh, looking at the big picture is heavy and it makes our hearts ache (literally) but we can’t stay there too long…our focus needs to shift back to “what needs to happen today?” and trust that we’ll know how to navigate tomorrow’s needs when they come.  As always, we appreciate prayers for peace and wisdom in the process.  Will you add Owen to your prayer list?  He is stable but still in critical condition after a cath earlier this week…a clot in his stent almost took his life on Wednesday and he is now on the top of the list for a second heart transplant!  He and his family have a long journey ahead on an all too familiar and frightening road and we want to help extend their circle of support.  You can click on his name above to get to their family blog or find him on FB (Owen’s Superhero Heart).

Finally, I ask that you add my mom to that list as well…poor Grandma Jo fell a week ago Friday and had surgery to repair multiple fractures in her leg on Monday.  She is now settled in a rehab facility in Lenexa, KS and starting the grueling work of recovery.  No word yet on how long she will be at the rehab facility but it will be long enough that patience and grace will be required.  I know she’d appreciate prayers for strength and pain management at this point too…she’s pretty tired and uncomfortable after her “work outs”.  It’s hard to be so far away in times like these.  Thank you for sharing in lifting her up in prayer dear friends!!!

Kinda feelin’ like summer can’t come soon enough!  Sending you our love and gratitude from the breezy central coast!!!

 

 

Mother’s Day weekend was marked by a trip down to LA to pick up Wilson and all of his stuff for the summer!!!  Woo Hoo!  It’s hard to believe that he has a year of college under his belt already but I’m glad the year went by so fast.  😉  We’re enjoying being together again…especially Rudy who has his roommate back.

Wilson had a good first year at APU…with his trademark enthusiasm, he made a lot of great, new friends, rocked his coursework and excelled in the ROTC program.  Although his scholarship didn’t require a commitment until the end of his sophomore year, Wilson came home at Christmas convinced the military is what he wants to do so he signed his Army service agreement this past winter.  It’s official.  I’m proud as well as a little concerned but very much comforted by his thoughtful process.  He knows (to the extent he can) what he is committing to and he is excited about his future.  He heads to Fort Knox, Kentucky later this summer for a month of training so we are taking full advantage of his being home now.

With Wilson home during the day, my brain is shifting to “summer mode” but I can’t quite go there yet as Max, Olivia and Rudy still have a little less than a month left on their school calendars.  We did, however, have our annual Teacher Appreciation Dinner on Monday which is a big indicator that the end of the school year is near.  Ha Ha  What a special time we had with two of Max’s teachers from DPHS, two of Olivia’s teachers from GVJH and 4 from “Team Rudy” at Mountain View Elementary & their families!!!  There is always much to celebrate and the folks we honored on Monday have been key to the kids’ successes this year…and what amazes me and Rolf is that they are just a small representation of an even larger community of quality, committed people who are investing and making a difference in the lives of our kids on a daily basis.  Yay TEACHERS!  Yay School Nurses and Therapists and Aides! Yay Administrators and Staff!  We are deeply grateful!

And so, we are in the final stretch.  Max is feeling the heat, especially, with his AP and SAT Exams this month.  He has actually handled the added academic stresses of the junior year with great confidence (and his trademark humor) which has helped to diffuse my anxiety for him!  Ha Ha   He is starting the college search process and it’s all very exciting…we’re looking forward to watching where his search will lead!

Olivia wraps up her volleyball season this weekend.  She has her eye fixed on high school sports for next year…although she has expressed interest in cross country, soccer and volleyball in the past, she’s not sure what she wants to pursue so we’ll see…there are a lot of fun changes and new beginnings ahead for our girl!  ‘So excited for her!!!

And. then. there. is. Rudy. 

Rudy has a new nickname at school…Rudy the Rascal!!!  He has been sowing some wild oats this spring with silly antics from time to time that make it hard for him to focus on his school work. Now that Wilson is home, Rudy is even less interested in school.  Every day this week, as we headed out the door in the morning, he stood in protest announcing “I stay right here!”.  Ha Ha  I think he may be experiencing a little spring fever too…a break from his normal routine this summer will do him some good. 

We had Rudy’s bi-monthly check-up with Dr. Harake today…the first of a string of appointments this next month with ALL of Rudy’s specialists as well as trips to the pediatric dental clinic and the pediatric heart clinic at UCLA.  It will be good to check-in with everyone…especially with those specialists we see only twice a year.  

MEDICAL UPDATE:  Rudy’s heart status remains about the same.  Dr. Harake did note that his last blood test on April 26th showed his hemoglobin level is high at 20 (a normal hemoglobin value for Rudy’s age would be on average 13.5).  When I asked him how high is too high, he said anything above 20…so he’s at the outer limit.  Rudy’s high hemoglobin level is to be expected with his condition as his body compensates for the lack of oxygen.  Unfortunately, there isn’t a medication to treat him.  Dr. Harake said that in extreme cases, there is a procedure where blood is extracted and replaced with fluid but he has not done this on a pediatric patient.  It’s concerning but we have some time to research and gather our thoughts before we go to the heart clinic on June 16th with our questions.    It looks like it also may be time to schedule another visit to the cath lab.  It has been almost 2 years since Rudy’s last cath and Dr. Harake would like to get some detailed information on how well his shunt is performing and coil some more collaterals.  Dr. Dan just called from UCLA (after talking to Dr. Harake) and advised us to get the cath scheduled but he wants to round table with Rudy’s surgical and cardiology team to determine if a cath is necessary at this time.   We so appreciate Dr. Harake and Dr. Dan and their team effort in all things regarding Rudy.  We’ve enjoyed a relatively long procedure-free season so a summer filled with medical consults and a cath makes sense if we end up heading in that direction.  We’ll keep you posted.  Bottom line, we’re praying for physical stability and joy for our boy wonder in whatever the summer holds for him.

Speaking of joy, Rolf captured this little video clip of Rudy at church on Sunday…’LOVE IT!

We sure do appreciate your continued prayers…for Rudy’s health and strength especially. This past major illness-free winter was such a gift and I pray his good health continues through the summer as well.  Thank you dear friends!

Rudy and his classmates competed in this year’s Special Olympic School Games today and it was, once again, deeply moving!  Thirty-five schools from California’s Central Coast participated in track and field events at the beautiful SBCC La Playa Stadium.  It was a gorgeous day with some beautiful people.  😉

Events like these are lessons for Rudy in “being a team player” and “embracing the moment…even if you’re not too keen on the activity”!  Ha Ha  Although he has no problem moving with purpose when he wants to, events like the Heart Walk and the Special Olympics are typically NOT those times!  It was a precious time nonetheless and just watching him casually walk around between events was enough to produce a few happy tears!!!

Pictures always tell a better story so here you go…

 

April started off with a visit from Grandma Jo and her two-week visit included some fun highlights for sure, like…

This is an exciting time of year.  With less than 8 weeks of school left in the school year, the calendar is filling up with all kinds of fun events. Rolf and I got to walk the red carpet with Olivia on Friday night at the Hollywood-themed 8th grade Soiree dance…a special tradition for GVJH 8th graders and their parents every year as the 8th graders prepare to graduate and make the big leap to high school.  It’s hard to believe our girl will be an official DP Charger in a few short weeks!!

Rolf and I headed to Los Angeles the following evening to attend Camp del Corazon‘s Annual Gala.  We walked our second red carpet in as many days and were honored to share in celebrating this amazing organization!  It was a great evening and so inspiring…as always!

The Dolby Ballroom in Hollywood was filled with celebrities but these are the people with whom we rushed to get pictures…Team Rudy Superstars Dr. Rick and Dr. Dan!!!

Another indicator that the school year is winding down is Open House night at the elementary school!  Rudy was so proud to walk around his classroom and show off his hard work…

There certainly were a lot of smiles tonight at Rudy’s Open House…great joy over all the fun & progress he experienced this year and great anticipation for the year ahead in 2nd grade.  SECOND GRADE!  Amazing!

We’ve had a bit of a heatwave this week which means the pool has been getting some good use…Rudy is usually the first to ask to go in and is growing in his confidence in the water…thanks to Rolf and his pool play:

Next up?  The Special Olympics on Friday!!!!!  Stay tuned….

 

 

 

 

Today was the annual Move-a-thon at Rudy’s school and Rudy did a GREAT job.  He conducted a FB “dollar donation” campaign and raised $100.00 (doubling his goal of raising $50) for his school!!!  More importantly, he participated in each of the four events and had a good time with his classmates.  😉

As you know, he doesn’t like all the fanfare that comes with events like these, but he was able to focus and complete the activities…he’s maturing and it shows.

I know I say this every year but I can’t believe it’s October 1st and I really can’t believe today is Rudy’s 7th birthday.  It has been a full day for sure but full of fun!!  This year was different in that it really seemed that Rudy anticipated his birthday in the days leading up to today.  His speech therapist took advantage of it being his bday week and worked on birthday related vocabulary words and dialog during their sessions earlier in the week, our neighbor next door brought over a giant Mickey card and balloons yesterday that we used to decorate last night and Rudy helped me prepare bottles of bubbles to take in to his classmates today!  Rudy was clearly excited this morning on our way to school and he soaked up all that today held for him!  Precious!!   Thank you for all the FB messages, texts and phone calls!!  Rudy can’t help but feel loved and we are so thankful for another birthday milestone for him…something we absolutely don’t take for granted!  Happy Birthday Big Boy!!!

Longtime Rudy’s Beat readers will remember heart hero Katie Manning…she was born with HLHS just 5 months before Rudy and her blog was one of the first Rolf discovered while searching the internet after Rudy’s diagnosis.  Her parents became a source of great encouragement and friendship as we engaged in epic battles alongside our babies on opposite sides of the country.  Katie lost her battle with HLHS 6 years ago today…November 9, 2008.  It was a loss we felt deeply and her tragically short life impacts me still!!!  I think of her often.

In the years since Katie’s death, her parents Vickie and Alan had 2 beautiful boys and started a non-profit in Katie’s memory called “Kisses from Katie” – a wonderful organization that seeks to provide a wide range of resources to critically ill children, their families and caregivers.  Every year in November Kisses from Katie hosts an annual fundraiser called “A Night To Remember” and the Mannings invited us to share our family’s story this year.  Since getting our family to CT is not possible, we opted to send a video instead.  Granted, our attempt to produce a video presentation is pretty amateur but we’re hoping it communicates our family’s heart and gives the KfK donors a glimpse into a family’s life with a critically ill child.

Just two months after Katie’s death, Vickie and Alan visited Los Angeles and took time to visit us and Rudy in the hospital at UCLA – such a brave thing to do in the wake of their profound loss and grief.  Although it was our first face-to-face meeting, there was an instant bond among us that made it feel like we were long lost friends.  One of the many gifts of this journey.  🙂  We send our love to you Manning Family!  We’re thinking of you today, remembering your precious Katie and praying for a successful Night To Remember on the 15th!

The Geyling family is scattered in many different directions this Halloween but we send our best wishes from all the little corners of our world to yours!  🙂  Happy Halloween!!!