Wish Night

We relived the joy of Rudy’s Wish Trip a bit on Friday night when we shared about it at the annual Make-a-Wish (Tri-Counties) fundraiser – Wish Night 2014! The big kids weren’t completely thrilled with having to drive down to Westlake Village (1/2 way to Los Angeles) on a Friday afternoon (in crazy Friday traffic AND stormy conditions) but when all was said and done, they were all glad we went. Max helped Rudy seat guests at the start of the event with a few other wish kids, Olivia kept a close eye on our silent auction bids and Wilson helped keep Rudy entertained at our table.

We were inspired by the “Fund-a-Wish” auction that raised enough money to fund 12 tri-counties wishes this year…3 more than last year! Super exciting. It was a great pleasure to share Rudy’s story and our gratitude to the staff and supporters of our local Make-a-Wish chapter. We sure wish this year’s recipients great joy and strength as their wishes are granted. Enjoy the fun!

Rudy is showing a little more interest in food….

…but needs to work some more on table manners! (That darn nasal cannula.)

After the event, Jedi Master Wilson gave young Padawan Rudy a lesson on practical uses of “the force”…

One last "red carpet" shot on our way out the door…:) — One last “red carpet” shot on our way out the door…:)

(Here’s the text of what I shared:

Our youngest son Rudy was born October 1, 2008 with a serious heart defect called Hypoplastic Left Heart Syndrome. He was born with half a heart and because of complications and setbacks after his first heart surgery, Rudy was hospitalized for 7 months after his birth. Due to compromises with his lungs, Rudy is not a candidate for any further surgical treatment or a heart transplant at this time.

Knowing Rudy’s prognosis is uncertain and likely poor, we first talked with the staff at MaW-TC shortly after Rudy’s third birthday. Although Rudy was unable to articulate his wish, my husband and I knew that Rudy’s heart’s desire would be to share a memorable experience with his big siblings (who he absolutely adores) and yet for Rolf and I, it was important to do so in an environment that would be safe for Rudy with his many medical needs.

We found the perfect place in GIVE KIDS THE WORLD (where “happiness inspires hope”). GKTW is a storybook village resort outside Orlando, FL built specifically for kids with life threatening illnesses and is a Wish Trip destination for 1000s of families each year.

GKTW is a magical place where Christmas is celebrated every Thursday, Ice cream is served for breakfast, lunch and dinner and where the mayor of the village is a giant 7 foot rabbit who will come tuck you in at night in your private villa. It’s also a place that has access to medical personnel as needed and easily accommodates children with medical devices and wheelchairs.

Months of planning went into Rudy’s wish trip to GKTW and what resulted was an experience in January 2013 that was certainly more than any of us could have wished for…all the details the Make-a-Wish staff planned unfolded smoothly, our family remained healthy and safe and, most of all, we managed to pace ourselves which all resulted in a precious, stress-free time to experience new things together as a family and laugh!

Rolf and I knew this would be a formative experience for our big kids as much as it would be for Rudy. We wanted Wilson (…17), Max (…15) and Olivia (…11) to understand the significance of this trip while at the same time feel the freedom to be carefree and simply enjoy. They did great! They shared in Rudy’s joy and delighted in his new discoveries and that blessed us. There were many activities where Rolf and I were unintentionally pushed out of the way and forced to watch from the sidelines. Ha Ha pastedGraphic.pdf Rudy was the center of their world for that week and that’s exactly where he wanted to be.

I wish there were words that could adequately describe the range of emotions Rolf and I encountered as “Wish Parents”. The trip was one of both beauty and pain. Much like our life with Rudy from day to day, joy and heartache coexisted at Give Kids The World. There was just no escaping the reason why we were on this trip . Multiple times a day, I was brought to tears overwhelmed by the kindness of the volunteers who were there to serve us while at the same time in disbelief over the fact that our family was even on a Wish Trip.

Unlike other Wish Trip experiences, ours was shared with “Wish Families” from all over the world and it was sobering to see so many children in a battle for life. It felt like we were walking on holy ground among people who regardless of their religious beliefs were on a faith journey just like us…forced to face immortality and the very real threat of losing a child. There was no “talking shop” or comparing treatment notes with the other parents. It felt like no one wanted to intrude on others’ space and so most kept a friendly distance and yet it was comforting to feel like we weren’t alone.

At GKTW, an impressive army of volunteers make all the magic happen…they serve the meals, plan and facilitate the daily activities and help meet the unique needs of each family…they are amazing. The volunteers we encountered ooooed and ahhhhed over how cute Rudy and the big kids were, engaged the big kids in conversation about their lives and asked very few questions about Rudy’s condition. Although I don’t mind answering questions about Rudy, it was surprisingly refreshing to not have to. That and the fact that we could forget about doctor appointments for a whole week had a positive impact on our family. We have adjusted to our “new normal” since Rudy was born…so much so that I’ve almost forgotten what it’s like to live outside the confines of our structured, routine life at home but the kids got to enjoy “vacation mom and dad” for a few days and the experience truly refreshed our souls!

The complicated logistics of traveling long distances with Rudy make it nearly impossible for our family to do so on our own. We could not have taken a trip like this without the support of Make-a-Wish. We are grateful to Linda at Make-a-Wish Tri-Counties, our wish-granter Anne, the staff and volunteers at Give Kids The World and the countless others who helped make this trip possible for our family. It really is an experience we will cherish for our lifetime and we are truly grateful. Thank you so much!)

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.

Breaking News: Walking in a Winter(?) Wonderland!

A little Christmas Eve surprise here in balmy Santa Barbara…

December 24, 2013 is going down in the baby book!!! We’re so excited!! Merry Christmas to all and to all a good night!

The Big 5!!!!!

Today is Rudy’s 5th Birthday! It is a bit mind-boggling to think about all the prayers and hopes, close calls and comebacks, all the tears of heartache and tears of joy, the disappointments and the celebrations, all the experiences and special family memories we’ve packed into these first 5 years of Rudy’s journey so far! Our family watched old Rudy’s Beat video clips on the Apple TV during dinner tonight as part of out celebration and it’s not only amazing to see how far Rudy has come but it’s also startling to see how much the big sibs have grown and matured! Oh my, they were all so young when Rudy joined us and now they are all so independent and articulate and, well, big!!

Each birthday Rudy has is a big deal but the milestone of him turning 5 seems particularly significant this year! We got so good over the years at taking life one day at a time that we really didn’t dare look too far into the future. And, now, here we are!! October 1, 2013!!! I wish I could say the day Rudy was born feels like it was just yesterday…but it doesn’t. 🙂 It has been a long marathon to get to this milestone birthday and, on some levels, the hard work is just beginning but as I watched Rudy at school today with a huge smile on his face and pointing to himself when his teachers and classmates sang “Happy Birthday” to him, I was overcome with gratitude for every step of this marathon…because every step whether crippled or strong has twisted and turned a path to today…and today was pretty sweet!

A big thank you to all who sent texts, FB messages, phone messages, cards and little gifts! He has been well-celebrated! Rudy’s life is full and rich and can be defined by the love that he gives and receives! We couldn’t ask for much more for any of our kids. Happy Birthday Super Rudy…our HLHS Warrior…goofy kid brother…inspiration…joy! You are 5! Woo Hoo!

Rudy's Birthday Buddy! Nurse Dodi is also celebrating a milestone bday...just 60 years between the two besties! Happy Birthday Dodi! — Rudy’s Birthday Buddy! Nurse Dodi is also celebrating a milestone bday…just 60 years between the two besties! Happy Birthday Dodi!

We all enjoyed a quick visit from Uncle Steve and Aunt Michelle on Rudy's Birthday Eve!!! — We all enjoyed a quick visit from Uncle Steve and Aunt Michelle on Rudy’s Birthday Eve!!!

Rudy got crowned during circle time at school today.

He shared popcorn and party favors with is classmates...so fun! — He shared popcorn and party favors with his classmates…so fun!

Rudy admiring his surprise birthday greeting! Thanks Lyn and Brooke :) — Rudy admiring his surprise birthday greeting! Thanks Lyn and Brooke 🙂

Ice cream for dessert was Rudy's special bday outing...yum! — Ice cream for dessert was Rudy’s special bday outing…yum!

Rudy had fun opening his own presents with Olivia's help — Rudy had fun opening his own presents with Olivia’s help.

Olivia gave Rudy one of her signature cards! Awesome!

And the boys gave Rudy a video greeting…Totes Presh!

Now it’s on to October 15th…Stoma Closure Day!!!!

Happy Day Day!

You may recall Rudy really mastering the words to “Happy Birthday” last spring with our family’s string of four birthdays between February and May. After all the birthdays were over, Rudy made the song appropriate for everyday singing by changing the words to “Happy Day Day to you. Happy Day Day to you. Happy Day Day to you-ooo! Happy Day Day to you.”. He’s been so diligent in wishing everyone a “Happy Day Day” in recent months, he had a hard time finding the right words to wish Olivia a “Happy Birthday” this morning! 🙂 He still couldn’t quite get it right by this evening but Olivia (aka IYA) felt well celebrated by his effort nonetheless…

It’s hard to believe our “little” girl is eleven. We’ve had alot of fun celebrating her the past few days with a family dinner at a favorite local eatery on Friday night, a luau party with friends on Sunday and cupcakes with her class at school today! My, oh, my!! I remember being so thrilled the night she was born and we found out we had a girl…the perfect compliment to our two beautiful boys!!! Rudy’s right…it was a happy day indeed! 🙂

A burger on the beach was Livy's choice for her family bday dinner! Yum! — A burger on the beach was Livy’s choice for her family bday dinner! Yum!

Olivia really enjoyed celebrating with some of her friends Hawaiian-style. — Olivia really enjoyed celebrating hawaiian-style with some of her friends on Sunday…

But wasn't too thrilled when famed hula experts "Kiko and Bernice" crashed the party to lead the girls in a little hula dancing!! — ..But wasn’t too thrilled when famed hula experts “Kiko and Bernice” crashed the party to lead the girls in a little hula dancing!! Ha Ha Check out the expression on her face!!

We promised the boys (aka Kiko and Bernice) that we wouldn't post this pic on FB but Rudy's Beat is definitely fair game!!! — We promised the boys (aka Kiko and Bernice) that we wouldn’t post this pic on FB but Rudy’s Beat is definitely fair game!!!

Rudy was such a good boy at school last week, he got to pick a prize from the prize box!!

Rudy was NOT a good boy at home today...he discovered fireplace soot! — Rudy was NOT a good boy at home today…he discovered the fun one can have with fireplace soot!

It's kinda hard to stay mad at this face! :) — It’s kinda hard to stay mad at this face! 🙂

Measurable Progress

Wilson captured a MAJOR milestone in Rudy’s development on video this afternoon…CRAWLING! I remember being “wowed” when the big sibs all learned to crawl as babies but I still took it for granted…it’s something Rudy has been working on in physical therapy for years!!! He doesn’t quite have the strength to hold his head up yet but he definitely has the concept down. Check him out…

In addition to crawling, Rudy has mastered pulling himself up to the standing position and cruising along the couch or around our bed…he is busy with a capital “B” and we’re all spending a good bit of our day cleaning up after the tornado that is Rudy when he is let loose to explore from this new vantage point! Both crawling and cruising are significant in the process of learning how to walk unsupported and at the rate he’s going right now, I have a good feeling it won’t be long before he takes those first independent steps!!! Go, Rudy, Go!!!

Rudy has also shown great improvement in his speech. He’s highly motivated by music and LOVES to sing which certainly helps promote speech! He’s got a pretty high pop/rock music IQ for a 4 year old thanks to the big sibs…Max has posted a series of fun music videos they’ve made together on Facebook…

A little Taylor Swift (reposted):

A little Bruno Mars:

“Click Here”

A little Justin Bieber:

We’ve even caught him at the computer singing along with Adele (and, of course, Mama’s got him singing classic Amy Grant!). Let the music blast and the progress be measured in whatever means possible! We take great delight in each and every step forward!!!

‘Just thought you might enjoy seeing some answers to your prayers! 🙂 Miracles do happen…and are often packaged in wonderfully simple ways!!! 🙂

Video Stars

Our spring break isn’t at all what I hoped it would be and, to top it off, Rudy came down with a nasty stomach virus resulting in an epic case of ED today (remember the explosive diarrhea?) so we’re staying close to home and making plans to tag team the many church and rescue mission Easter services and activities going on the next four days. Please pray this bug passes quickly…Rudy is losing fluid as quickly as we’re putting it in and dehydration is always a big concern with him. The big kids are making the most of it, however, and happily entertaining themselves with Netflix and various creative activities.

Thanks to Olivia, Rudy can add “Music Video Super Star” to his resume with yesterday’s iPad project! 🙂 It makes me smile…

‘Wishing you a smile today too!

Grace Under Pressure

Rolf and I had a conversation recently about the value of disappointment in the lives of our kids. As a follow up, Rolf forwarded the following article to me…“How Middle School Failures Lead To Medical School Success” and I think it’s worth sharing. I appreciate the article because I not only have a vested interest in the emotional health of medical professionals but because it also affirms my views on the subject as it applies to life in general. As much as I want to protect my kids from disappointment or heartache, the reality is that if I can help them navigate these experiences rather than shield them from it, they will learn the important life lessons (as quoted from the article) of “resilience and self-worth that lead to grace under pressure” and ” the ability to face adversity with intelligence and equilibrium”. Bottom line: I sooooo want this for my kids!!!

This is a timely subject to ponder as I’ve revisited prayers for balance and emotional stability for the big sibs lately. Rolf and I have tried hard to be “present” for the big sibs and create as normal a lifestyle as possible since Rudy came onto the scene but the reality is that they have had to sacrifice certain things and make things happen for themselves when Rolf and I haven’t been available. Our life is different and I pray the resulting effect is a positive one for all of us. I want my kids to know that life is beautiful and rich and something to be valued but it will also bring with it challenge and I pray the lessons we’re learning from Rudy will empower the big sibs to face the challenges in their lives with intelligence, balance, compassion and grace.

It feels to me that there has been a shift in focus recently…when Rudy was a baby, his care was consuming but it was hands-on and something we did at home…together. In recent months, what has been the most consuming is the management of Rudy’s care between the various agencies with which we partner and I feel like it has eaten up more of my time and emotional energy…time away from and energy not given to the older sibs. I’m not quite sure how to achieve a sense of balance again…food for thought at this stage in the game, I guess, but I think a much needed break from school and therapy during spring break next week will help me regroup a bit.

Hey, speaking of “food”…Rudy sure is making progress with eating food by mouth. With the extra practice at school and with Nurse Dodi, Rudy is happy to try new tastes and textures but also knows what he does and does not like. Mint ice cream remains top on his list as he demonstrated to Olivia last week:

It’s exciting to see him show more and more interest in food! Dr. Kelts called yesterday with the results of Rudy’s ultrasound…as expected, his liver is enlarged (likely due to back pressure related to his heart) but there isn’t anything we can do about it…the test results mainly serve as baseline information for us at this point. It also revealed that Rudy has gall bladder stones. Again, it’s not something we need to address but what the heck?! So, with the ultrasound behind us we have a break from Dr. appts for a couple of weeks which coincides nicely with spring break which coincides nicely with our warmer temps…spring fever is definitely running rampant in our household! 🙂 Happy Spring everyone!

Counting down to Make-A-Wish

We’re in a bit of a frenzy in these parts with the typical need to get a lot of things done before one heads out for a vacation. Between school, work, household and activities it does feel like all of us will have very full schedules up until departure next Thursday. We’re excited. Some of us are packing. Some of us were packed three weeks ago (guess who–also the same sick person who has the Valentines ready to go). Some of us have yet to pack (and won’t until after sundown Wednesday). Lots of ground to cover between now and then but that makes the prospect of settling into an airplane seat and breathing a sigh of relief seem all the more exciting.

In the meantime, there’s still the occasional impromptu moment where the kids are goofing around after dinner. I hear there’s pretty good entertainment in Orlando, but I’m not sure if they can top this:

There’s so much in store for us in the weeks ahead, but more important than all the cool attractions is the fact that we get to experience them as a family. Rudy is one of those kids that can’t actually articulate his own wish so when the Make-A-Wish granters interviewed us, we both felt clearly that his would involve the siblings he loves so deeply. There’s nothing like watching him light up even for the silly Chubby routine. Here’s looking forward to a week’s worth of golden moments!

Fingers Crossed!

It’s Sunday night and a welcomed quiet night at the end of three really full weeks! In addition to a handful of doctor appointments with Rudy, this past week was also consumed with a bureaucratic tug-of-war that left me feeling exhausted and frustrated. I’ll spare you the details but it’s situations like this week’s dilemma or battles with crApria that are so stupid in the bigger scheme of things and yet cause the most emotional turmoil for me. It’s maddening!! But it’s time now to let it go and look ahead at this week and Rudy’s procedure at UCLA on Tuesday. Please pray that our plan to decannulate on Tuesday will happen as scheduled. UCLA Anesthesia called on Thursday to conduct the routine pre-op survey to go over Rudy’s medical history and the fact that he had a couple of seizure episodes last weekend was of concern. They would like to follow up with Rudy’s neurologist so we’re crossing our fingers that there isn’t any reason to postpone the procedure! We’ve waited so long for this and another delay would be pretty disappointing.

Rudy had a good week…he slept a little longer each morning and was a bit more mellow than usual but he was happy and active. He slept through his PT and OT sessions on Monday but made it on Thursday. Although he was VERY motivated to practice walking with his walker, his physical therapist and I noticed a distinct change in his stability. His left foot and leg were turned out prominently and pretty shaky when he put weight on his left side. It seems maybe he has lost some strength as a result of the seizures unlike what we’ve noticed before but it’s hard to know for sure. He isn’t lacking in desire, though…check out his workout today: (admittedly a long video, but it gives a pretty good idea of how hard and determined our little champ works).

He was also pretty proud to put on a show for us yesterday…this video just isn’t long enough…

Imagine how he’ll be able to sing without that tracheostomy!!! 🙂

We’ll keep you posted on what unfolds tomorrow…hopefully the call from UCLA giving us our call time for Tuesday!! Thank you for praying us through another trip down south. Blessings dear friends…