Our boy who has a smile that takes up half his face had another positive check up with the UCLA dental clinic yesterday…no sign of decay, the calculus (hardened plaque) that has built up is still on the surface of his teeth providing a protective barrier and NOT along his gums which would be bad AND he got a new Lightening McQueen toothbrush!!! Woo Hoo I’m so grateful for his good oral health as this will be crucial should he become a heart transplant candidate down the line. Next month (Dec. 18th, I think) we head back down to UCLA for a check-in at the heart clinic (routine 6 month appt). Busy season!
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!
Yesterday was Rolf’s and my 22nd wedding anniversary…it was a typical day in the Geyling household (a.k.a. too busy to celebrate) so we have an anniversary date yet to enjoy but yesterday was made extra special by the Special Olympics!! Rudy and his classmates got to participate in the annual Special Olympics field day in our town. Seventeen schools from the Carpenteria, Santa Barbara and Goleta school districts with kids from K-12th grade came together for a morning of fun and games! :)
With Nurse Sara and I on either side for support, Rudy enthusiastically got out of his chair and was ready to run UNTIL the actual soccer event that his class was assigned to began. With the first blow of the referee’s whistle, Rudy shifted his weight, leaned back into his rear and wouldn’t bear any weight when Sara and I tried to right him. He did, however, make an impressive show of coordinated mobility when attempting to leave the field (!)…once again doing life on his terms. Granted, it was another UNSEASONABLY HOT day and it was crowded and a little chaotic but Rudy had fun nonetheless and it was a special day for all. At one point, Sara and I were sitting with Rudy on the sidelines and I watched as all these amazing kids played soccer with parents and their dedicated teachers & aides playing alongside them (directing their every step in some cases) and I was overwhelmed, once again, by the truly special community the special needs crowd is. Rich, rich, rich stuff! LOVE the Special Olympics, love these kids…love our funny boy!
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!!!
Well, the flu and bug season is upon us once again and it feels particularly threatening this year with the outbreak of pertussis and enteroviruses here in Santa Barbara. I’m not one to get too caught up in fear over stuff like this but I’m definitely feeling the need to be aware and take extra precautions…i.e. time to break out the Costco size jug of hand sanitizer and wash, wash, wash those hands!!!! :) Rudy came home from school sick two weeks ago. Nurse Sara was on top of things and recognized the symptoms early so I was able to get him home and on a regimen of Tylenol/Advil just as his fever started to spike. He battled a high fever and the accompanying symptoms for a couple of days but was able to fight it off quickly and was back in school on day 3. Unfortunately, I caught the same bug and was down for three days as well. I asked Rudy’s doctors if there’s anything more we can do this winter to keep him safe and their response was unanimous…keep him out of the ER. :) So, as we take these extra precautions and pray for a bug-free winter, we trust Rudy will remain safe and healthy this crazy bug season!!
Rudy and I may have been down for a few days but the fun of the past couple of weeks didn’t stop…
It’s fun to watch Rudy’s world expand…he’s meeting new friends (at school for example) and enjoying experiences & making memories without the family by his side. It’s becoming more and more common to be out in public with Rudy and run into BFFs that we’ve never met! Ha Ha He’s definitely more popular than we are. ;)
Rudy had a very special opportunity to be honorary captain at the SB City College football game this past weekend. We met the team and shared Rudy’s story on Friday night and then attended the game on Saturday to promote awareness of Congenital Heart Defects (CHDs) and highlight the work of Camp del Corazon (www.campdelcorazon.org)!!! Rudy was a little overwhelmed at first (football players are ALOT bigger in person than on t.v.! ha ha) but warmed up to all the fanfare and found a comfortable spot to watch on the sideline. Yay Vaqueros!!
Then on Sunday, we took Rudy to the annual “Monster Ball” celebration with the UCSB Gaucho baseball team! It’s a sweet gathering of special needs kids in our community with games, snow cones, popcorn and, of course, candy! Rudy ran into a couple of buddies from his class last year and, once again, it was fun to experience a growing sense of community in Rudy’s expanding world.
Even with all the extra special activities in Rudy’s schedule this past week, his all time favorite moments remain those he spent at home with the big sibs…:)
I don’t consider myself a big risk taker. I’ve never had a huge desire to go skydiving or cliff jumping, I’m too cheap to gamble and I’m too practical to not “play it safe” in most areas of my life. As a result, I was struck by a quick interaction I had with Dr. Dan after Rudy’s heart cath back in July that has left me pondering what it means to take risks in life.
You may recall that it was deemed necessary during Rudy’s last heart cath to attempt to place stents in Rudy’s aorta…a somewhat risky procedure as Drs. Dan and Harake needed to get the large stents to his aorta through the only open artery Rudy has left in his groin. There was much discussion during pre-op about saving the femoral artery by pursuing surgical options to gain access to the aorta instead. There was more discussion with Dr. Dan by phone from the cath lab as well as a consultation with Rudy’s heart surgeon during the procedure that resulted in a unanimous decision to go for it through the groin. We were relieved when the procedure was over and very excited that it was successful. While Rudy was getting settled in recovery, Dr. Dan met with us to discuss the details of the procedure and brief us on where things stood, etc. We were all pretty giddy by the outcome and as we got up to leave and get back to Rudy I said “Congratulations Dr. Dan. You did it! Well done.”…without hesitation he said (something like/not a direct quote) “No, you’re the ones to be congratulated! You were willing to take a big risk and you gave us your consent.”.
Risk-takers? Us? I guess it’s all in how you look at it because it sure didn’t feel like we were the ones taking a risk…it felt more like, for Rudy’s sake, we had no choice. BIG leaps of faith sure don’t seem risky when you feel you don’t have any other options and, in looking back, there sure haven’t been many options in our journey with Rudy. I’ve mentioned it before but at every critical crossroads (especially in those early months), we never really had options in treatment…the road was laid out for us one step at a time as Rudy’s body dictated the direction we journeyed and, when needed, we gave consent for treatment when the risk of not doing something became greater than the risk involved in the procedures themselves…pretty straight forward…harrowing but straight forward.
Believe me, I’d jump out of a plane, dive head first off a cliff or place a big fat bet on a blackjack table risking millions in a heartbeat if it would somehow change the course we’re on with Rudy. We saw Dr. Harake today for Rudy’s routine echocardiogram. All the activities that fill our family’s crazy calendar in the weeks between appts with Dr. Harake are such a fun and healthy distraction from Rudy’s reality and I find the cardiology check-ins leave me feeling a little raw. A strange juxtaposition as I really appreciate talking with Dr. Harake and having Rudy monitored so closely every two months but I do walk away reminded that Rudy’s heart is in a constant process of failing…the constant dull ache in my heart resurfaces and the burden feels a little bit heavier. I’m grateful, though, that Rudy is managing it all well and thriving…grateful for the respite of fun in between the reality checkpoints and so grateful Rudy is in good hands. Rolf and I may very well be taking risks on Rudy’s behalf as we try to navigate this crazy course but I’m so profoundly grateful that we’re not shouldering the burden alone…Rudy is surrounded by an army of friends and family who pray, a host of gifted medical professionals who skillfully treat and the God of hope who sustains, strengthens and grants peace in the midst of it all! I might be a little weepy tonight but I’m eager to discover what fun distractions tomorrow will bring. :) Thanks for praying dear ones!
Here are a few of the rich distractions from last week…
One of my favorite things about the fall season is the official school picture portrait!!! There’s just something about getting that envelope full of pictures sent home from school that excites me…it marks another milestone in the lives of our kids and marks the passage of time on our fireplace mantel. We have a lot of gorgeous photographs of our kids that I cherish…everything from the silly candid shot to the artistic (mostly thanks to Greg Lawler! Ha) but the quirky, slightly awkward school pictures we’ve collected over the years are favorites as well! I guess it’s more about the subjects than the pictures themselves ;)
This year we get to add Rudy’s first school picture portrait to the mantel! A kindergarten picture that is fast becoming a family favorite complete with an oxygen tube impression on his face , a clip-on tie that’s too heavy for his shirt and a slightly crooked, happy smile that brightens up his whole face!!! Priceless!! I LOVE IT! I love these pics…I love these kids!!
Happy Fall Everybody!
Here’s a look back at the big kids’ Kindergarten school pics…
Rudy went from “Super Star of the Week” to a weekend full of stars as we celebrated at SBRM’s “Viva la Bayou” event on Saturday and the UCLA Mattel Children’s Hospital’s “Party at the Pier” on Sunday. It was a jam-packed weekend but it was filled with things that refresh my soul (good friends, family, hard work, hope and sunshine) so it was energy and effort well spent. We’ve had another wicked heat wave blaze across southern California so I was a little nervous these outdoor events would be too hot for Rudy but he handled it all pretty well and we all focused on the fun to be had. :) We’ve had a crazy schedule of significant experiences in the last week and a half on top of the regular family routine so it’s going to be hard to slow down and catch up on the chores I’ve let go in the last few weeks to prepare for all these special events. It’s time to get back to real world stuff…;)
Talk about a week FULL of all kinds of fun! Sandwiched between all the Heart Walk activity last weekend and the Santa Barbara Rescue Mission’s annual Bayou event coming up THIS Saturday, it’s Rudy’s turn to be “Super Star of the Week” THIS WEEK at school which means he gets to share a little about himself each day, he gets to be line leader each day AND sit at the front of the class during circle time, etc, etc… Not surprisingly, Rudy is EATING IT UP, relishing being in the spotlight and LOVING the special attention from his teachers and classmates. I’m a little nervous he’ll experience a tough “fall from grace” next week when he’s no longer Super Star of the Week but we’ll cross that bridge when we come to it. :)
In the midst of it all, of course,we celebrate TODAY…10-01-2014…Rudy’s 6th Birthday! My emotions have been all over the map today but bottom line our boy is deeply loved, he’s happy, easily laughs and eagerly embraces life…any way he can. He’s growing in independence, determination and ability. He’s moving forward which means we’re moving forward along with him…one step at a time. Happy Birthday Rudy…you enrich the life of our family.
While I was walking Rudy into the Kindergarten play yard from the parking lot one day last week, one of his classmates walked alongside us and politely peppered me with questions about Rudy. After a little pause in our conversation she asked “How old is Rudy?” and I said “He’ll be 6 next Wednesday.”. Without hesitation she said “WOW! He’s old!”. I think I surprised her a bit when I threw my head back in laughter and responded “You have no idea how glad I am to hear you say that! We sure have lots to celebrate next week!.” :) Even though this little one is likely only a few months behind Rudy in age, I love that there are now kids younger than Rudy who see him as a “big boy”…a GREAT reminder of how far Rudy has come! :)
The celebration of Rudy’s 6th birthday started early yesterday with a fun turn out for the American Heart Association’s annual Heart Walk. The crazy heat wave finally broke early last week and we enjoyed a gorgeous Saturday morning along Cabrillo with the ocean as our back drop. Local friends along with some friends from L.A. and Irvine joined us for the 5K Walk/Run and I’m SUPER proud to report that “Team Rudy” surpassed it’s 10K goal by raising a total of $11,620.00…putting our cumulative grand total at nearly $52,000.00!!! TRULY AMAZING! Well done everyone!
It was fun to share the morning, once again, with DP’s drum line and Westmont’s baseball team…with special “heart” buddies like fellow-survivor John Dixon and Logan’s mom, Rayme…and countless friends from the special community that surrounds our whole family. What touched my heart most this year was watching how the big sibs engaged in the day…they put great thought into their plans leading up to the Heart Walk, took it upon themselves to invite friends and enjoyed the event together but in their own individual ways. It’s familiar to them now, they’ve caught a vision and they were invested…LOVE IT!
Rudy? Well, he definitely had a plan of his own as well. After weeks of walking up a storm at home, he chose NOT to walk at the start of the event…stubborn would be putting it mildly. It’s as if he was saying “I’m not your performing monkey” while refusing to walk in front of the drum line, cheerleaders, dozens of onlookers AND the media all waiting for him to triumphantly walk unassisted!!! Rolf and I pulled out every trick in the book to coax him into walking but his determination to NOT walk was steadfast. He did, however, feel all kinds of freedom to walk when all was said and done and the crowds were long gone! Honestly!!! :) I decided pretty quickly, though, that I can’t be too frustrated with him as it’s that stubborn streak of his that has likely contributed to where he is today…it’s a big part of what we’re celebrating in him this week! :)
Of course, celebrating Rudy goes hand-in-hand with acknowledging the hundreds of people in his life that have played a part in his successes…everyone from those who have said a prayer to those who are hands on in his care. You are all heroes in our book and we invite you to share in the celebration! To the larger “Team Rudy” community…YAY YOU!!! We are so grateful!
Here are some HEART WALK 2014 highlights (by Greg Lawler):