Well, I finally figured out/got around to posting the article that ran in last week’s Santa Barbara News-Press about Rudy. Needless to say, we’re still pretty tickled about it!
Grandma Jo got a taste of celebrity on her plane flight from SB to Denver. Her travel neighbor was going home after visiting her daughter in Santa Barbara and when it came up in conversation that Grandma Jo was in SB visiting her daughter’s family and grandson who has half a heart, the woman replied “is that the boy who was in the paper?!”. Ha Sadly, Grandma Jo returned home to Kansas on Wednesday. Rudy is missing his playmate. 🙂 He liked all of Gma’s songs and games. And, now, after a string of really big events, it’s back to the regular routine on the homefront and preparation for Rudy’s heart cath next Thursday. ‘Heading into another big season…
We couldn’t have had a more gorgeous day for the AHA Heart Walk on Saturday…35 friends joined our family for the walk and cake celebration after the 5k stroll along the waterfront in Santa Barbara. (A fun mix of friends from the Rescue Mission, my Bible Study, La Patera Elementary School, Coast Community Church, NurseCore, and Los Angeles…and, of course, Grandma Jo!) It was a day of laughter, tears, celebration and thoughtful reflection. We were blessed by the outpouring of support and thrilled by our team’s fundraising effort totaling over $8,000.00!! Thank you, all, for this impressive collective effort! Wilson, Max and Olivia embraced the day and were enthusiastic participants of the walk…they inspire me! I’m so grateful Rolf and I get to do life with them. 🙂
Like a great deal of this journey, the pictures tell a better story…
Getting ready to go....Grandma Jo and Rudy wearing matching "Survivor Caps"!A sea of "Rudy blue" at the start of the walk.A good visit with old friends!Big Bro lends a handLeaders of the pack
Walking side by side with Logan's parents - Rayme and BrettA day filled with memories of Logan Elliott
...and other special heart-buddies
Rudy took a nap along the way"Thumbs Up" from WilsonA strong finish by Mom and DadTime for cake!We won the t-shirt contest!Comfortable on Grandma's lap
Phew! All of our “BIG” events are done now before Rudy’s cath on the 21st. We’ll have some last minute fun with Grandma Jo before she leaves on Wednesday and then get ourselves organized for the quick trek down to UCLA…Thank you dear friends!
The activity continues this week at a fever pitch! Just when we feared things would calm down between the Birthday and the big Heart Walk this weekend, a story about Rudy was featured in Tuesday’s edition of the Santa Barbara News Press. We’re so proud and are working to get it linked or posted online for all of you Rudy fans to see.
An equally big highlight for me was the chance to meet some true heroes. I had an opportunity to attend a conference at Stanford and, while it’s always fun to go prowl my alma mater (even if the only students I know to look up are kids of people I went to school with!), I was most excited that it would give me a chance to finally meet the Nelsons. Over the course of Rudy’s journey, we’ve come into contact with many families facing similar circumstances–and a few of them become your friends.
If you read their blog, you will quickly get a sense of Justin and Victoria’s devotion to little Moriah. Recalling my chance to see it first-hand makes my eyes a bit moist; love, concern, wisdom, joy, celebration, faith, hope, beauty in such abundance. Moriah is adorable and her parents are such people of peace and grace having been thrust into one of the most challenging parenting scenarios conceivable. Over the last two years, we’ve received vivid reminders of just how much might be asked of us as parents, but that becomes so clear when I see parents who have relocated, quit jobs and altered their lives to an unbelievable extent on account of their child’s needs.
Among the graces extended to Rudy is the fact that he didn’t come when his parents were in their mid-twenties. I am in awe of Justin and Victoria and the way they have navigated this. With her third birthday approaching, Moriah still has yet to spend any significant stretch of time at home. But it’s getting very close and our prayers are with them–for Moriah’s health and for the mountain of logistics that need to be overcome with insurance, home health, etc. in order to get her there. What awesome people. What a great visit. I hope I’m not being to forward if I insist on doing it at YOUR HOME next time! Be sure to check out their blog and pray with us.
Justin, Victoria and Moriah proudly displaying their Rudy swag!
Devoted Rudy fans might have recalled yesterday’s significance…October 6th. Five days after his birthday. That unforgettable day two years ago when he had the Norwood (remember this and this). As much as this date is etched into memory it got a bit overshadowed yesterday when Olivia got home from school and discovered that her pet fish, Allen, had gone to the great fishbowl in the sky. As I was out of town, Max officiated at the memorial. He shared that Allen was a good fish and he made Olivia very happy during his short life. He gave unselfishly and asked nothing in return except for daily food and weekly changes of water (hindsight indicates that neglecting the latter may indeed be fatal). Olivia is doing well, buoyed by the prospect of getting a new fish after school today, but draws comfort from us all remembering Allen–there was no beta like him!
This is definitely a season of fundraising in the Geyling household. Yesterday was the Santa Barbara Rescue Mission annual fundraiser “Take Me Back To The Bayou”…a very special event for a cause to which we are deeply commited…the culmination of months of preparation and two full days of set-up by the Women’s Auxiliary (even Olivia spent her Saturday morning on the ranch to help decorate)…we are so blessed and pleased…the entire day was simply stunning.
Team SBRM!
Now with the Bayou behind us, we can focus our energy on next weekend’s Heart Walk. A BIG thank you to the many who have donated to the American Heart Association in honor of Rudy. We’re happy to report that our team is currently ranked 2nd in fundraising for the Santa Barbara walk!! As of today, our grand total is $5866.00! The #1 ranked team is headed up by Rayme Elliott (Logan’s mom) so we are pretty excited that two “Heart Mom” teams are doing so well! It’s not too late to donate! Rolf is just two hundred dollars short of his goal so if you would like to participate by giving, please follow the link below to Rolf’s webpage where there are easy to follow instructions to donate online or send us a check (made out to the American Heart Association and sent to us at 6250 Avenida Gorrion, Goleta 93117) and we’ll make sure it get’s added to his total! 🙂
In addition to the fundraising, we’ve been busy making other preparations for the day’s festivities! Rolf turned our garage into a t-shirt factory creating t-shirts for our team! We’ll have our official unveiling at the t-shirt contest the morning of the walk but here’s a sneak peek…
Team Rudy!
Those who are in the area are welcome to join us at Chase Palm Park Saturday morning! We’ll gather at the park after the walk around 11am for birthday cake and fellowship! We hope you can join us!
‘Looking forward to another great event for another special cause!!
So here we are…Rudy is 2 years old. When Rudy was born, the milestone of him turning two seemed so far down the road that we didn’t dare strain our eyes to envision it and now, looking back, it is hard to believe two years have passed! How is it possible? Reflecting on the past two years both overwhelms me and fills me with hope. Today is a day for reflection and gratitude…
4:16pm October 1, 20084:16pm October 1, 2010Stella's gift to Rudy...DRUMS!!!Stella is showing Rudy how it works...Dinner Party at "Rudy's"!!
Present Time!
9pm October 1, 20089pm October 1, 2010
Rudy has come so far since the Norwood and we praise God for His grace and peace through every step of this journey…nothing in this journey has been particularly easy and, yet, blessings mark our memories! We can’t say it enough…we are grateful!
Thanks to you all for the sweet greetings on the blog and Facebook…stay tuned for Birthday Part II next weekend at the Heart Walk! Bless you dear friends…
You may have picked up that birthdays in the Geyling household tend to be celebrated over a “period of time” lasting longer than the 24 hours of one’s actual birthday. So it shouldn’t seem odd that Rudy’s 2nd birthday celebration officially kicked off today at a party with Max’s class at La Patera Elementary. What started out as a humorous suggestion by one of Max’s classmates on Monday turned into a classroom birthday bash today complete with pizza, veggies and…party favors!!! A BIG thank you to Miss Grant and her class for their thoughtfulness (and to Brandon D. for the bday toast!). We’re all about making special memories and today’s celebration is a good one to add to the list! 🙂
Fun with Miss Grant and Room 12!Playing with a new toy on the eve of his 2nd birthday!
There’s quite a bit to be excited about right now…a fun visit with Grandma Jo, Rudy’s Birthday, SBRM’s annual fundraiser at Dos Pueblos Ranch THIS Saturday (so much fun), the Heart Walk coming up next weekend AND…football (both professional and Max’s YFL season)! It doesn’t get much better than football in the fall…right Rudy?
Front row seat to all the action!Big football watching boy!
There’s certainly more fun to be had and we’ll post an “official” bday post tomorrow but unil then…thank you for sharing in the pre-bday fun with us and thank you for your significant role in Rudy’s success and progress…we wouldn’t be where we are without the countless prayers that have been offered on Rudy’s behalf!
Thank you, cousin Kaitlin, for the Rudy Rolls!! We'll deliver them on the 21st!!
The docs told us several times that, due to what Rudy had to endure at the start of his life, he would have his own unique developmental time line. That’s certainly been the case. The milestones come slowly, but they do come.
About a month ago, we realized that sponge baths were getting kind of difficult. Due to his compromised health and this trache and G-tube being potential sites of infection, regular hygiene is a big deal (having a Mom who’s borderline OCD works in his favor here). We don’t have the biggest of kitchen counters to begin with and Rudy has become very good at grabbing for things and knocking them down. So bath time became a sort of juggling routine of trying to control his squirming, catching items (sponges, medical supplies, dish soap, the phone, the fruit bowl) before he knocked them over the edge, and then–oh, yeah–actually getting him clean.
So, now that he can sit up pretty well on his own, we finally decided to see if we could skip the sponge bath and put him in the sink. While we captured the first couple of times on video, we thought it would be cruel to post that as he HATED it. We suspect there was something about the new sensation that just wasn’t suiting him. But that’s where having a skilled in-home therapist at home sure is handy. Olivia loves taking care of her little brother and he clearly loves her attention. Check it out:
We’ve got a big bathing boy, who even likes to splash around in the tub! Astute Rudy fans might recall that this isn’t Rudy’s first foray into the bath…but look how far he’s come! Stay tuned…if he keeps growing this way we’ll have to transition him to the actual bathtub before too long!
Thanks everyone for your prayers. The antibiotics seem to have done their magic and, with the demise of ED and EFD, Rudy’s diapers are holding containment and the smells emanating from there are the usual kind.
We laid lower than usual for the past couple weeks, but as Rudy got his spunk back, we ventured out to have some fun. Down at Ventura Harbor on Saturday, Rudy was intrigued enough by the car ride to tolerate the din of the arcade:
Back home on Sunday, he felt up for taking his own set of wheels out for a spin. Check out that leg strength–Fred Flintstone’s got nothing on him. Not to mention that back and neck strength!
Cars are cool! Especially red convertibles. The same cannot be said for red trains:
Get me back in my car!!!
After all, you can’t sit behind the wheel of a train and hoot and holler. No girls can hear you…you need a convertible for that!
I’m ashamed to admit that I really didn’t know exactly how the heart worked before Rudy’s heart defect was diagnosed. I knew that it pumped the body’s blood to where it needed to go but beyond that I really didn’t give it much thought and, truly, took the heart for granted. Even after Rudy’s diagnosis, I had to reread the “If Your Child Has A Congenital Heart Defect” booklet we received from the cardiologist a few times to wrap my brain around what exactly was going on in our son’s heart and still couldn’t quite grasp the complexities of it all. As we prepare for the 2nd of Rudy’s three heart surgeries, I thought it would be helpful to explain (as best I understand) what’s going on in Rudy’s heart and what will be asked of it in this next phase of his treatment to kind of put things in perspective.
Rudy had his monthly cardiology appointment with Dr. Harake yesterday. The symptoms surrounding his pneumonia diagnosis last week really weren’t addressed specifically but the issue of his general health is key as we approach his scheduled heart cath on October 21st. Should he get sick, the cath will have to be postponed so we are praying for a speedy recovery and good health from here on out – especially as we head into flu season. In regards to his heart, everything looks about the same and we will see Dr. Harake one more time in mid-October before we head down to UCLA for the heart cath. There is evidence, however, of the possible narrowing of Rudy’s aorta – a condition known as “Coarctation of the Aorta” which makes it hard for the blood to flow through this artery to the lower part of the body. This is something Dr. Harake has been keeping an eye out for and could be happening now because the aorta is not growing with Rudy. Dr. Harake and the team at UCLA will verify to what degree the aorta has narrowed during October’s heart cath and, if needed, perform a balloon angioplasty to open it up.
A diagram of Rudy's Heart from his last cath
So, here’s my simplified explanation of where we’re at and what’s coming…
In a normal heart, the blood low in oxygen flows from the upper body back to the heart through the SVC (Superior Vena Cava) into the right side of the heart (right atrium and then right ventricle). The right side of the heart pumps the blood into the pulmonary artery which takes it to the lungs to get fresh oxygen. After the blood is refreshed with oxygen, it returns to the left side of the heart (left atrium and then left ventricle) where it is pumped to the aorta and taken to the body’s general circulation.
Because Rudy doesn’t have the left side of his heart, he is currently known as a mixed-blood baby. His oxygenated and non-oxygenated blood flows through the shunt that was attached in his first surgery (Norwood) – see diagram above. The Glenn procedure will begin the process of separating his blood. In the diagram above, you’ll see that the SVC that is bringing the blood from the body back to the heart is located in front of the pulmonary artery at a 90 degree angle. In the Glenn, the SVC is severed from the heart and attached directly to the pulmonary artery. Essentially, we’ll be relying on the blood from the upper body to “drain” it’s way directly to the lungs instead of being “pumped” to the lungs through the heart. The success of this procedure is dependent on good lung health as well as little blood resistence so the blood is allowed to drain into the lungs. (Rudy has been treated with two Pulmonary Hypertension drugs for the past 6 months to reduce this resistance)
I was rereading the history of one of our HLHS friends who passed away last year after his Glenn and his mom described it as “his body couldn’t adjust to the recirculation of the blood”. This was helpful to me because it reiterated the fact that we are completely rerouting the circulation of Rudy’s blood in this process…asking his body to do something that it wasn’t intended to do. We are asking A GREAT deal of his little half of heart and surrounding, compromised lungs! And so, it motivates us to pray…to pray fervently and specifically in preparation for the Glenn…whenever it happens. We’re doing all we know to do to keep Rudy healthy and strong for the Glenn but, ultimately, the success of this next big leap is out of our control. We pray for God’s continued protection and mercy AND perfect timing for surgery as we prepare to move forward.
We humbly ask you to join us in praying specifically for the things mentioned above…may our prayers weave a blanket of protection and comfort over Rudy that will prepare him and surround him in the weeks and months ahead. 🙂 As always, thank you…we are so grateful for you! Love and Hugs…
A late night trip to Michael's to use my 40% off coupon before it expired!
I think Rudy's just happy to be out of the house! 9-11-10
Rudy's Beat 