First Day of School – Take 2

Rudy's first day at La Patera Elementary School 1-27-2014 — Rudy’s first day at La Patera Elementary School 1-27-2014

Rolf’s last post about “managing our expectations and emotions” accurately describes the emotional valleys we encounter as we continue to live “in limbo” alongside Rudy. Although we struggle with Rudy’s uncertain future, there is comfort in watching Rudy enjoy life to the fullest…I’m not sure it’s accurate to say that he is “blissfully unaware” of the battle he is in but he certainly doesn’t know any different and there is very little that steals his joy and smile.

Today was another perfect example of how heartache and deep, deep joy coexist in this crazy journey. After months of discussion and planning, Rudy had his first day of Kindergarten at our neighborhood school today! His modified schedule includes Mondays at La Patera and Tuesdays through Fridays at his current special ed school where he will continue to work on specific goals and receive special services. Knowing that this year was going to be a bit of a transitional year for Rudy as he moved from a county program to our local school district a full year before his formal Kindergarten placement, I requested that he have an opportunity to attend our neighborhood school where he and Olivia could have a shared educational experience and where he would have a chance to interact with neighborhood friends (i.e. gal pal Stella). Rudy will likely go to another Goleta school next year with an established special ed Kindergarten program and because Olivia will be headed off to Junior High next year, this is their only chance to go to school “together”. Needless to say, we’re all so thrilled that the district and LP community were willing to work with us, see the mutual benefits for all involved and welcome Rudy into the classroom mid-year!!!

Everything about today was precious. The day started when we pulled up to the school and Rudy said “Bye, I-ya (Olivia), see ‘ya” to which Olivia replied “Rudy, you’re coming too!”. The minute we got out of the car and headed to the Kindergarten playground, Rudy’s excitement was undeniable…he was quickly surrounded by classmates who were told last week that he would be coming and he bonded with some of the kids over basketball. We are overjoyed that Rudy’s school nurse, Nurse Sara, is able to accompany him at both schools…her support and the continuity of care that she can provide no matter their location is crucial and such an amazing gift.

In response to a letter (see below) the school sent home about Rudy last week, one of the little boys in Rudy’s class walked right up to me and said with a proud smile “My mom told me to be nice to Rudy.” (Ha, ha – Classic) The kids circled up and when Rudy’s new teacher introduced him to the class, Rudy waved enthusiastically as if on cue. To see him so warmly welcomed by the students and staff at La Patera was, well, magical…

Rudy was happy and excited the minute we walked on the Kindergarten play yard! — Rudy was happy and excited the minute we walked on the Kindergarten playground!

Rudy waving a friendly "hello" to his new friends... — Rudy waving a friendly “hello” to his new teacher and new friends…

…and sharing a BIG smile with gal pal Stella!! — …and sharing a BIG smile with ol’ friend Stella!!

Rudy wasn't too interested in coming home when it was time for pick up! — Rudy wasn’t too interested in coming home when it was time for pick up! 😉

When Rolf and I arrived to pick Rudy up, big sis was helping in his classroom during her lunch break and Rudy was playing on the computer with friends. We had a hard time tearing him away and it all clearly made a big impression because the first thing Rudy said to us was “Dad, Mom! Neat game!!”. Nurse Sara and Mrs. Farrington confirmed that Rudy had a great first day filled with smooth transitions between activities, positive interactions with the other children and a happy demeanor…a happy heart! As a result, our breaking hearts are happy too…a curious combination.

a note from one of Rudy's classmates…precious! — a note from one of Rudy’s classmates…precious!

...a letter introducing Rudy to his class. — …a letter introducing Rudy to his class.

Managing Expectations and Emotions

We had our appointment with the transplant team at UCLA Thursday. It’s hard not to come away feeling spent afterwards. In one respect, these are like the regular check-ins we do with our doctors here in Santa Barbara but they always include a battle to balance expectations and emotions. Instead of a quick office visit on a pretty tree-lined street, we have to navigate parking and the environment of a busy research hospital in a major city. As much as you try to keep things in check, there’s something about the experience that builds your expectations–maybe all these smart people in these buildings filled with nifty equipment will be able to tell us something definitive about Rudy’s prognosis. Maybe it might even be something really good.

These treks to the Cardiomyopathy Clinic will likely become a routine check-in every six-months allowing the transplant team to directly monitor Rudy’s condition. We started the day with an extensive echo. While the machine in SB is perfectly fine for keeping track of things, the one at UCLA is state of the art and that–along with our own improved ability to decipher things–made for a pretty emotional moment as clear, sharp images of Rudy’s heart moved across the screen. I was making occasional glances up to the screen while trying to keep Rudy still and kept seeing what looked like a small crab claw opening and closing. I finally just had to ask the tech to back up and focus on it–he confirmed that I was seeing what I thought I was seeing: the left side of Rudy’s heart–a shrunken little chamber about 1/10th the size of the right one that was chugging away on center screen. On top was the tiny mitral valve snapping open and shut in tempo with the larger tricuspid valve.

But doing nothing.

It never has.

It never will.

And yet it’s been there flapping open and shut like it’s accomplishing something. For some reason it just gave me chills. It felt like we were suddenly seeing our enemy in plain view. So much unexpected anguish entered our lives because of that little useless snapping lump.

After the echo, we had to wait for our appointment with the cardiologist. It’s hard to sit in the waiting area of the Pediatric Heart Transplant Suite without a pretty hard dose of reality hitting you in the face. We were quickly back to life in the ICU–lots of beautiful, heroic and blue sick children–some just show up in their pajamas because that’s all they ever wear or they likely know they’re going to be disrobing a lot anyway. Generally weary parents doing whatever they can do to cope with the intensity: putting on bold faces, trying to distract kids with humor or electronics. Frustration breaks through every so often but there are just as many looks of quiet compassion and empathy from one parent to another. It’s overwhelming to think of how many families are going through such gut-wrenching stuff. You can’t help but think “Dear God, how will all these kids get a heart?”.

It actually makes you happy to have the kid who’s getting antsy over having to sit in his chair. We’ve learned if we recline Rudy’s wheelchair far enough he can stand behind it and use it as a walker, so Rudy proudly marched up and down the hallway chirping “Hi!” and “See ya!” to most anyone who would listen (and just about everybody else that didn’t). At one point Trish took to singing with him to keep him entertained and, as they finished a quiet rendition of “You are My Sunshine”, I looked up and noticed the receptionist was wiping tears from her eyes. This place is just so sacredly intense.

We had a long session with Dr. Alejos during which Rudy tore the paper covering the exam table into confetti and threw it around the room. We apologized and tried to rein him in, but Doc waved it off saying, “This is great! I get more concerned when I see the kids lying there not doing anything.” Even so, it really is a challenge to be having a conversation about heart failure, quality of life and transplant outcomes while one person in the room is carrying on like he’s in Times Square at New Year’s.

Dr. Alejos is in regular communication with Dr. Harake and didn’t see any immediate need to address anything in Rudy’s case. Rudy’s stability allows them to track things long-term because heart function and size can vary a little from echo to echo, so they really want to watch for progression over time. Like all the doctors at UCLA, he is very patient and willing to answer questions repeatedly. That’s good because these appointments are probably turning into periodic reality checks for us. Life in Santa Barbara with our kids and family thriving can sometimes be so idyllic, we forget about the stuff Rudy is facing. A heart transplant is a big operation and it does not provide a long-term solution. It only extends life for a finite amount of time so the longer it can be put off the better.

Just plain heavy. Simply being back at UCLA revives all kinds of memories from the seven months we spent there–much of it wondering if Rudy would ever get to go home. We are so grateful for caring doctors and incredible expertise, but as we walked out of the building to debrief and decompress, I reminded Trish of our substitute acronym for HLHS…”Half a Little Heart SUCKS!” It probably won’t get printed on any t-shirts, but you can’t go through something like this without occasionally just calling things for what they are. So unreal that anyone would need to wrestle with things like this. So sad that any kid would have to deal with this.

After all of this, it was so restorative to see Dr. Rick who asked us to page him when we were done for a visit down on the patio. Sitting there on an obscenely beautiful day (clearly far removed from the polar vortex) we had a chance to catch up on life and see Dr. Brian and Dr. Dan as they were walking by. Rudy quickly grew tired of grown-up talk and decided to go exploring–which almost always means getting as far away from us as possible. Dr. Dan, perhaps having a smaller permissable child roaming perimeter than we do, finally had to go give chase.

How about coming back this way to Mom and Dad?

[Rudy assumes “invisibility posture”; his way of stubbornly ignoring instructions]

As persistent as he might be in the cath lab, Dr. Dan finally came back without Rudy.

It was a long and draining day. As therapeutic as the drive home along the ocean can be, nothing beats being back in the friendly confines of home. Rudy was pretty pooped, but his sibs still made sure he didn’t miss out on some evening roughhousing.

Boo Hoo! We Got The Flu :(

After getting the kids settled back in school, our household got hit with the flu…Livy came down with it on Tuesday evening and Max & Rudy got it practically simultaneously early this morning. Thankfully it ran it’s course through Olivia in less than 24 hours so I hope it’s the same for the boys. ‘Praying it stops there and doesn’t bring the rest of us down. Grandma Jo headed home yesterday and made it safety back to KS…dodging the flu bullet! Needless to say, we’ll be staying close to home the next couple of days. 😦

Bye, bye Grandma Jo

Welcome 2014

Well, as much as I hate to see Christmas vacation come to an end, we are a week into 2014 and the kids are back in school so I guess it’s time to move on. Welcome 2014! This time last year we were preparing to go on Rudy’s Wish Trip to Give Kids The World…it’s hard to imagine what 2014 will bring that could top the fun we shared in 2013 but my prayer is as it always is at the start of a big, unknown new year…that we’ll take it one day at a time and see God in it all…the good and the bad! 🙂 We trust that this will be a year of great gain for Rudy…that his health concerns will continue to take a backseat to his developmental progress and that he’ll find great joy in his family and his growing community of friends. He sure enjoyed the extra time he got to spend with his big sibs and Grandma Jo over the break. The harsh reality of the big sibs being back in the school/homework routine, Grandma Jo going back home to KS on Wednesday and Nurse Dodi’s retirement is going to hit hard later in the week when he’s left with only good ol’ (boring) mom to play with during the day. Poor guy…how long ’til Spring Break?

Well, we have this week to get organized and the house back in order before Girl Scout cookies arrive (YEP, it’s that time of year again) and our meeting with Dr. Alejos at the Cardiomyopathy clinic down at UCLA on January 16th. I have lots of thoughts and questions swirling around in my head that I’d like to rein in a bit before our appointment but it’s getting harder and harder to carve out time to process things…we kind of just take things as they come these days…so we’ll see.

2014 has started out pretty great with some sweet sibling moments…’praying it continues on this positive trajectory in the months ahead!

Rudy was happy at midnight... — Rudy, Max & Olivia were happy at the stroke of midnight on New Year’s…

Simple vacation fun…Max trying his hand at Rainbow Looming!... — Simple vacation fun…Max trying his hand at Rainbow Looming!…

…a quiet moment with G'ma Jo. — …a quiet moment with G’ma Jo.

Auld Lang Syne

As we say farewell to 2013, our family is also saying “farewell” to Rudy’s longtime nurse. Nurse Dodi was assigned to Rudy’s case nearly 4 1/2 years ago shortly after we brought Rudy home from the hospital and after threatening to retire for awhile, she decided now is the time to scale back. We appreciate Dodi’s sweet care of Rudy…she has been an important member of “Team Rudy”…she will be missed! 🙂

Rudy will miss his special playmate! ;) — Rudy will miss his special playmate! 😉

Thank you Dodi!!

It’s hard to believe that 2013 is coming to a quick close but we have a truckload of fun memories to take with us as we continue to live one day at a time and not try to anticipate what the new year will bring! 🙂 HOPE and LOVE to you all…Happy New Year dear friends!

Goodbye 2013…

Last minute Christmas preparation included cookie decorating…Wilson spent 20 minutes on one cookie!!

His technique even involved tweezers... — His technique even involved tweezers…

Rudy's gift from the folks at Tiffany & Co! — Rudy’s gift from the folks at Tiffany & Co!

The 5th annual SBRM Turkey Bowling champs!!

a little post-Christmas trip to the beach…ending 2013 with temps in the mid-70s…just sayin'. — a little post-Christmas trip to the beach with Gma Jo…ending 2013 with temps in the mid-70s…just sayin’.

Have Yourself A Merry Little Christmas

'Wishing you a joyful and FUN Christmas! — ‘Wishing you a joyful and FUN Christmas!

We’re down to less than a week before Christmas…we still have the SBRM Homeless Feast, a couple of special church services AND a trip or two to the store left to look forward to before the big day. Grandma Jo arrived this week from Kansas and the kids are eager to start their Winter break..in the midst of it all, I’m filled with gratitude for the family and friends that surround our family. ‘Just wanted to stop and take a minute to tell you that you’re appreciated and dearly loved.

When you visit the same Santa year after year, you get pretty friendly... — When you visit the same Santa year after year, you get pretty friendly…

Grandma Jo hit the ground running when she touched down…Christmas parties! School performances! SBRM events…and more! Ha Ha

The boys are getting a little cuckoo!!! We're ready for winter vacation. — The boys are getting a little cuckoo!!! We’re ready for winter vacation.

A couple more favorites from the family photo sesh 2013….

Have yourself a merry little Christmas!!! Love, Rudy

Joy In The Journey

Heart Update: Rudy saw Dr. Harake this week for his routine cardiology appt. I’m always eager to touch base with Dr. Harake and find out where we stand. The echo this month shows a bit of an increase in Rudy’s heart size. Enlargement of the heart is expected in HLHS patients. Rudy’s little half a heart is not capable of pumping the blood his body needs effectively so over time it will get bigger and will ultimately lead to heart failure. Surgical interventions (i.e. the Glenn and Fontan) help alleviate some of this pressure on the heart and slow down its enlargement but it’s a side effect that we’ll always need to keep a close eye on whether Rudy is able to have future surgical treatments or not. The notable change in Rudy’s heart size is concerning but Dr. Harake’s response was calm and matter of fact. He would like us to make an appt. with Dr. Alejos (who directs the pediatric heart transplant program at UCLA) to simply touch base and discuss options, if any, Rudy might have. We talked to members of Dr. Alejos’ team at the heart clinic back in May but we have yet to talk to Dr. Alejos directly which Dr. Harake would like to see happen so we’ll follow up on that before our next cardiology appt in February. The change in heart size is not severe enough that we need to act quickly but a reminder that we do need to be actively thinking about our next step should Rudy’s condition decline.

Even the slightest change in Rudy’s status can cause our hearts to sink and send us into a bit of an emotional tailspin but the reality is that this is just an extension of the path Rudy has been on for 5 years…nothing new, nothing we weren’t warned about.

It all just makes the joys in this journey even sweeter…honestly. One of the greatest joys in our journey with Rudy has been the amazing people with whom we share similar paths. Because of everyone’s complicated lives and the distance between many of us, much of our communication with other heart families is via FB or email but once in awhile we get the great joy of hanging out in person and we got to do just that with one of our favorite heart heroes last weekend when we were up in San Jose. The Nelson family was kind enough to take time out of their holiday weekend to spend a day with us and we soaked up sweet time with Moriah, her parents, little brother and brand new baby sister!! Honestly, Moriah’s smile when I said “hi” to her filled my whole being and I felt I was walking on holy ground when she and Rudy interacted…they are sweet buddies and I’m so grateful for the little visits we’ve gotten to share with Justin, Victoria and their precious family.

Olivia holding brand new baby Olivia!!

a little Rudy love... — a little Rudy love…

a little Moriah love... — a little Moriah love…

Sweet hearts…literally! — Holy Ground Moments

We sure packed our 2 1/2 days in the Bay Area full of fun activities and friends who we haven’t seen in a very long time…all of which was good for our souls! Happy December friends…Wishing you all joy, joy, joy!!!!

a quick trip to Chinatown in SF... — A quick trip to Chinatown in SF…

Taking in the all the Holiday hoopla at Macy's — Taking in all the holiday hoopla at Macy’s

Pizza on a curb…yum! — Pizza on a crowded curb…yum!

No trip to SF is complete without a visit to our bridge…and a little walk down memory lane!

Rolf proposed on the top of THIS Golden Gate Bridge tower... — Rolf proposed on the top of THIS Golden Gate Bridge tower…

Max and Livy at the Stanford/Notre Dame game with our god-daughter Maya and her sister Sarah…Fear the Tree!!

Wilson, Rudy and I stole away to Novato for a little Eusebio fix!

It all culminated with a lot of laughter with the Lynches!! We are blessed!

Grateful!

A little flu bug came to visit us earlier this week…Olivia and I both had it for about 36 hours from Tuesday afternoon until our fevers broke late Wednesday night. It left as fast as it came for which I was particularly grateful on Thanksgiving morning but it has been a while since I’ve felt that sick. In fact, I thought maybe we would have to alter our Thanksgiving holiday plans as a result but once the fevers broke, Livy and I perked up and the family was able to get the car packed and on the road just a few hours later than originally planned…headed for the Bay Area. This little family weekend getaway was originally planned as a football trip for Rolf, Max and Olivia to see the Stanford/Notre Dame game on Saturday but when we realized it landed on Thanksgiving weekend, we decided to make a family trip out of it and visit friends in the area too. It’s nice to get away and the Bay Area is about the longest distance Rudy will tolerate in his wheelchair and the big kids will tolerate crammed together in the backseat of the medical van! 🙂 Although there was nothing traditional about yesterday’s Thanksgiving Day, we managed to squeeze in a couple of thoughtful traditions…at Olivia’s leading, we went around the table and all shared the things we’re most thankful for while we ate at a Hometown Buffet off the freeway in Salinas and we had a family toast with Martinelli’s Sparkling Cider once we arrived at our destination. 🙂 Good Times!

While I was in bed from Tuesday to Thursday morning, I was so grateful for the kids…Livy, who was battling her own 102 temp and lethargy, didn’t complain and took care of herself, Rudy entertained himself (aka “enjoyed having free range of the house and emptying every accessible cabinet”) and Max & Wilson made themselves available to help while Rolf was at work (which included taking care of Rudy’s feeds, meds, baths AND more than one technicolor diaper blow-out – THANKS WILSON!). When it was clear Livy and I wouldn’t be going to the big feast at the Rescue Mission on Wednesday (very disappointing!!), Wilson was happy to drive himself and Max to the event and they even filled in for me by providing musical entertainment in the courtyard while the guests waited to be served! So grateful!!!

SBRM Thanksgiving Feast entertainment by Max and Wil!

They make a difference in people’s lives…they make a difference in my life…they make a huge difference in Rudy’s life. I hope they understand their significance someday. I have pictures of Rudy interacting with each of the kids at various times this past year and I tell the big kids that if they ever doubt in life that they are adored, they should just take a look at these pictures…

Ever patient Olivia playing with Rudy this fall.

After hesitating at the start of the Heart Walk, Rudy saw Wilson step out of the drum line at this moment and was quick to catch up to him! His expression says it all!!

Olivia was at a friend’s bday party last weekend and a friend of ours sat next to her at lunch and asked “What’s great about being a Geyling?”. Olivia thought for a moment and said “We laugh a lot.”. I heard similar sentiments from the others yesterday as we all shared what we’re thankful for! How grateful I am that of all the things that go on in our household from the silly to the scary, “laughter” rises to the top. May it always be so! ‘Praying laughter is filling your home this holiday weekend as well. As always, we are grateful for you!! Happy Thanksgiving Everyone!!

Worth posting again…I'm not sure if Rudy is supposed to be a Native American or a turkey but he's got his trademark "all smile" going on! :) — Worth posting again…I’m not sure if Rudy is supposed to be a Native American or a turkey but he’s got his trademark “all smile” going on! 🙂

Taking Time to Savor!

Holy cow, it was just Halloween, I blinked and now we’re less than a week away from Thanksgiving!!!! I’m super excited for the holidays but I fear the next month is going to FLY by, once again, much too fast. 🙂 As always, my goal is to savor every moment of the holiday season…the harried, the quiet and the festive!!! But I’m getting ahead of myself, there has been much to savor this month already.

It was a bit of a blur but Rolf and I celebrated our 21st wedding anniversary on the 7th. As it turned out, Stanford was playing Oregon in Palo Alto that day so Rolf and a friend stole away for a long day trip up north to see the game. Rolf and I managed a quick breakfast date on the beach before they left and we’re looking forward to a little overnight getaway after the holidays when things calm down a bit. 😉

Bright and early on Veteran’s Day, Olivia, I and her entire 6th grade class/teachers/chaperones boarded a couple of Air Buses and headed down to Long Beach to catch the boat to Catalina Island on our way to CIMI (Catalina Island Marine Institute). CIMI is a special rite of passage for our 6th graders every year…a three day camp experience filled with hands on education in oceanography, marine biology and ocean fun! Rolf had the privilege of going with Max and this year it was my turn! I admit I was quite nervous leaving Rudy…it was a huge effort to leave town…but I’m so glad I went. It was an amazing experience to share with Olivia and her classmates and I welcomed going to a completely different world for a couple of days. We went day and night snorkeling, kayaking to a world-famous kelp forest, tide-pooling in the camp’s beautiful cove and had lots of “classroom” time petting sharks and learning about fish, plankton & algae. As much as I loved growing up in the Midwest, I kept telling the kids how lucky they are to live in a place with access to such beauty….they just looked at me like I was crazy (ha, ha)…they’ll get it someday. 🙂 I thought about Rudy A TON while we were on the island…about how much he would love to do the things we were doing and it made me even more grateful for Camp del Corazon (camp for heart kids) as it is also located on Catalina Island!!!! Camp del Corazon purposes to give heart kids a “normal” summer camp experience in a safe, medically monitored environment! I sure can’t wait until Rudy is old enough to go (summer of 2015)…he’s going to have a blast!!! 🙂

Oma and Opa flew in from Alabama while Livy and I were still on the island but we all finished out the second half of their visit together and had a great time…lots of walks around the cul-de-sac with Rudy and lots of schnitzel! Yum!!!

I’m looking forward to the Thanksgiving Feast at the Rescue Mission next week…it’s always such a privilege to celebrate with the SBRM residents and homeless guests! As we begin our Thanksgiving preparations and look ahead to Christmas, I pray we’ll have many moments to stop and savor all that is good and rich…we have so much for which to be thankful! 🙂 Happy Day Day Everybody!!!

Celebrating 21 years – November 7, 2013

Olivia snorkeling in the clear waters off Catalina! Yes, she’s in the ocean…not our pool!

Goin' for a walk with Oma and Opa! — Back at home…Rudy goin’ for a walk with Oma and Opa!

Halloween 2013

As is typical this time of year, we’ve had a full schedule the past two weeks since we brought Rudy home from UCLA so I apologize for not updating on Rudy’s post op status. He is healing nicely and seems to be adjusting well to the closure of his “extra airway”. His new found ability to hold his breath and all the new sensations associated with the closure are curious to him, I think, be he hasn’t skipped a beat. We have a post-op appt with his ENT at UCLA on Monday. I’m preparing myself for the fact that it might be our last appt. with Dr. Shapiro for awhile…kinda strange! 🙂 Unfortunately, Rudy has struggled a bit this week with low O2 sats, fever and lethargy. It has been concerning but I’m hoping it’s just a bug that will pass quickly. Rudy hasn’t let it take away from today’s Halloween fun though! Rolf and Olivia (and Max too) worked hard on Rudy’s TOTALLY AWESOME costume so you’ll need to scroll down to see their finished product! 🙂