Rudy has been raising money this past week in a $1.00 donation campaign for his school’s Move-a-thon that was supposed to happen yesterday. Sadly, the Move-a-thon had to be postponed (for the second time!) due to rain. Spirits might have been dampened a bit but not our gratitude! A BIG thank you to the dear ones who sent Rudy a $1 (or two!). Hopefully we’ll get to share some pics of the fun when the school field dries out and the Move-a-thon is rescheduled!
A rainy school drop off…full of smiles!Rudy’s name was entered in a school raffle for the donations he turned in and he was one of several winners! Rolf is happy he won the Surf Country Surf Shop gift certificate. Ha Ha
We actually welcome all this rain. After being in a drought for nearly 5 years, the many winter storm fronts that have passed through our area are desperately needed. The hills surrounding Santa Barbara are green again and our lakes are filling up! A good thing for sure. May our land get it’s fill. Happy Weekend Everybody!!
It has been awhile since we updated on Rudy’s progress in oral feeds….in part because there hasn’t been much progress. Rudy’s interest in food ebbs and flows so when he’s interested, we jump on it and when he isn’t, we let it go. The tomato basil soup at Kyle’s Kitchen is still a big favorite and his go-to request at home is ranch dressing. The “eating” that he does is limited to smooth textures that he can lick off a spoon or carrot stick.
Well, Rudy’s interest in food is flowing this week and while he was licking his ranch dressing at dinner last night, he requested banana. Banana? Rolf popped up right away and grabbed a banana and spoon from the kitchen and I got a spoonful of banana up to Rudy’s mouth before he could change his mind. A couple of bites in and Olivia got some video footage!!!!…
This is significant because this is the first chunky texture he’s been able to swallow!!!! Yay! Baby steps may be small but they’re steps in the right direction…Go, Rudy, Go!
Rudy had another big “first” this past weekend. He (along with Rolf and Max) had his first private plane adventure thanks to a friend of ours here in town. I really can’t say much about it since I wasn’t there but Rolf was able to capture a bit of the take off on video. Clearly Rudy had something to say there at the end of the short clip but couldn’t quite find the words…priceless!
The Geyling men enjoyed their 30-minute aerial tour of Goleta’s beautiful coast and bird’s eye view of our cul-de-sac. SO FUN! A big thanks to Steve (and his dad) for contributing to those “quality of life” experiences that, quite literally, expand world views, lift spirits and fuel dreams! Awesome!!
Our cul-de-sac in the top right…
Thumbs up!
While the boys were flying the friendly skies, Olivia and I had a fun girls weekend visiting friends in Temecula and Los Angeles AND we even snuck in a quick lunch with Wilson! Speaking of Wilson, he was featured on the APU Honors College Facebook page last week. His quote encouraged me…the occasional sound bite into his life at the ZOO is always a treat.
Speaking of college life, Max decided this week that he will be attending Point Loma Nazarene University in the fall!!!! We are thrilled for him. I lived in San Diego for a couple of years and LOVED it there…I’m certain Max will fall in love with it too. Yay PLNU Sea Lions!!!
Rudy is definitely feeling more like his old self after battling a virus for a couple of weeks…just in time for his school’s annual Move-a-thon scheduled for this Friday, CHD Awareness Week, Valentines Day, the fun 4-day President’s weekend and a trip to San Diego at the end of the month!! Woo Hoo! Stay tuned for some fun pics…;) Happy February Everybody!!!
Well, it has begun…the reality of Max graduating and heading off to college later this summer is starting to sink in as we watch him experience significant “lasts” with each passing season. For example, yesterday marked the end of Max’s high school hockey season…and he played in his last tournament!! (sniff, sniff) Rolf and I couldn’t help but get a little verklempt as we made the familiar trek up to Santa Maria knowing it would be the last.
Santa Barbara represented well as both varsity teams advanced from the semi-finals to play against each other in the championship game. It was a fun way to end this chapter…getting to cheer for both teams in that final match-up filled with kids Max has played alongside for the past 5+ years!
We are so grateful to the administrators, coaches, players and families that make up the SB Youth Hockey Association for the positive fun, special friendships and investment in our family!
Well done Maxo! Thanks for introducing me to an experience I wouldn’t have had otherwise and for turning me into a hockey mom!! 😉
Getting a fist bump from the team’s #1 fan before the final game……and a celebratory hug afterwards!Way to go SB Gold!The graduating seniors!Rookie MaxNext generation?Maybe not…but this little guy is going to MISS the rink most of all, I think.
Rudy had an EEG appointment yesterday. It has been several years since his last EEG but because Rudy hasn’t had a seizure in almost two years, Dr. Corazza recommended we retest to determine whether or not we can begin to wean Rudy off his daily doses of phenobarbital. Rudy was a happy and cooperative ROCK STAR during the hour long test and the tech said she was able to get some “beautiful data”! Dr. Corazza called later in the evening with the results…unfortunately the results are “not normal and continue to show a seizure tendency” so he strongly recommends that we leave Rudy on the pheno for now. I’m a little disappointed as it would have been super fun to see some healing in this area for Rudy but I’m not surprised given the nature of Rudy’s brain injury. So, we’ll continue to do what we’ve been doing and pray Rudy’s current dose of phenobarbital will continue to keep the seizures at bay. He’s actually at the maximum dosage for pheno…if seizures were to surface again, we’d have to make a medication change. Anti-seizure medications can have some pretty disturbing side effects and Rudy has done so well on pheno that we hope it can be his drug of choice as long as he needs it.
We’ve had a quiet start to 2017…Wilson headed back to APU the first weekend of January and hit the ground running in his new schedule of classes. Max and Olivia still had semester finals to prepare for when they headed back to school on the 3rd. They were thrilled to finish finals week last Friday!!! Olivia sailed through her first high school finals week and Max is one big step closer to graduation…the countdown is ON! 🙂
Rudy enjoyed getting back to his friends and teachers at school after the long break. He’s back to his twice weekly physical therapy sessions but has yet to be assigned to a new OT since his last OT retired in December. He had a routine check-up with his neurologist a couple of weeks ago. Because Rudy has been seizure-free for almost two years (his last seizure was in Feb. 2/15), Dr. Corazza scheduled an EEG for tomorrow to determine whether or not we can begin to wean Rudy off his anti-seizure medication. That would be exciting!!! We’ll keep you posted…
Rudy has been battling his first bug of the season this week. He was sent home from school early last Thursday and has been home sick ever since. Thankfully, his fever broke on Monday and his energy is returning. We’re hoping he’ll sleep through the night tonight (after several sleepless nights) so he can return to school tomorrow. 🙂
Rudy happy to be back at school with his friends and teacher Ms. Ochoa!On the mend after a week long viral bug.
Rudy has actually had a long, healthy run the past several months so we pray this bug will run it’s course quickly and be the end of Rudy’s cold and flu season! 😉 ‘Hoping your new year is starting off healthy and happy!
With Christmas just 4 days away, excitement and anticipation are building for sure! Rudy has figured out the whole unwrapping gifts routine making it necessary for us to rewrap a few gifts already! The gifts that arrive early and typically sit patiently under the tree until Christmas have now been stashed in the closet for safe keeping!!! Ha Ha
The last couple of weeks have been filled with a combination of holiday festivities like the SBRM Staff Christmas Party and Auxiliary Tea, key medical appointments for Rudy and some Silver By Trish shows. In the midst of all the seasonal and routine, we enjoyed making a new friend from Australia when we hosted Luke for a few days last week through a program at the kids’ high school. Max and Olivia were great hosts and had fun introducing Luke to many of their friends. Rudy was particularly happy to have a new playmate! Ha Ha Thanks again, Luke, for being fun and spontaneous and for putting up with our brand of crazy! 🙂
Rudy’s new Australian friend Luke!
Last week also included a bittersweet goodbye to an old friend when Rudy’s OT celebrated her retirement from the Medical Therapy Unit! We will certainly miss Janine but we are also very excited for her and hope to see her around town doing fun retirement things! 😉
Saying goodbye to OT Janine!Bye Bye Friend!
I got to go to Rudy’s class for some more holiday fun on Friday and while I was there, Rudy showed off his new classroom desk!
Big boy Rudy at his desk.School fun!Letter to Santa? (check)
Wilson is home! Yay!! Max, Olivia and Rudy are on winter break! Yay!! And we’re ready for Christmas! Double Yay!!
Oh yeah, and Rolf reached a major 2016 milestone yesterday:
1000+ miles in 2016!! Way to go Rolf! YAY!!
Merry Christmas dear friends!! Wherever you are in the world and whatever you have planned for this weekend, I pray it includes memory making moments with people you love and countless reminders of how very much you are loved and appreciated!
It’s officially the Christmas season and we’re enjoying all the traditional activities that accompany this time of year. The kids have one more week of school before their winter break and we’re counting down the days! 😉 I skipped town the week after Thanksgiving to spend a couple of days with my mom in Kansas for her 85th birthday! It was short but sweet and we made the most of our 2 1/2 day visit…
Happy Birthday Gma Jo!While I was gone, Rudy enjoyed a field trip to In ‘n Out with his classmates…
Yum!…and the start of Maxo’s high school hockey season in Santa Maria……and when there is a car in the cul-de-sac that looks like “Sheriff” from Radiator Springs, you gotta get out of the minivan to take a picture (even if it means you’ll be late for school!).
I got home from Kansas just in time for a string of Silver By Trish trunk shows and we squeezed in decorating the house as well!
Rudy’s impersonation of a Christmas tree!The stockings are hung by the chimney with care…
Rolf, Rudy and I headed down to UCLA early Thursday morning for a visit to the heart clinic and a meeting with Rudy’s surgeon. Rudy had an extensive echo exam and Dr. Alejos confirmed that there isn’t much change in Rudy’s heart status since his last echo. Rudy’s tricuspid valve leakage and hematocrit level are high but his heart muscle is strong!
We had some free time between appointments so we visited the PICU on the 5th floor and enjoyed seeing some familiar faces…Roger and Dr. Kelly. Rudy insisted on walking and he made his way around the 5th floor corridors as if he owned the place…the sight of him walking around those halls that are filled with so many memories never ceases to take our breath away and it’s always great fun to see how those who cared for him in those first several months of his life react to seeing him now. 😉
As we have described before, discussions about what to do next have come to a bit of an impasse since Rudy’s heart cath in July. The contributing doctors in conference who are unfamiliar with Rudy’s history and are just looking at the numbers, feel the Glenn is the logical next step.Those who know Rudy’s history disagree.Dr. Dan (cath cardiologist) encouraged us to talk with Dr. Brian Reemtsen (surgeon) directly to help us sift through all the varying opinions.
Although we have had quick consults with Dr. Brian in the hospital hallway after past caths, it has been years since we’ve had a detailed conversation with him and Rolf & I were eager to hear his thoughts on where we stand in Rudy’s treatment plan.Dr. Reemtsen was direct in his communication with us on Thursday…although there are cardiac indicators and pulmonary progress that would typically represent the need and green light for surgical intervention, he is not recommending surgery at this time.The main reason being that what can be done surgically wouldn’t make enough of a difference to warrant the risks…even good surgery results wouldn’t bring a marked improvement to Rudy’s life and/or heart function.Dr. Brian believes the greatest risk to Rudy from a surgical standpoint is his issue with chylous fluid.Chyle is a milky bodily fluid filled with free fatty acids (FFAs) that is transported through the lymphatic system.Rudy battled the leakage of chylous fluid in his pleural cavity (chylothroax) for 8 weeks after his heart surgery in 2008 and then again in his abdomen after his stomach surgery in 2009. During the height of his battle, Rudy lost a third of his body’s total fluid EACH DAY. Dr. Reemtsen told us that he has never had a patient (or heard of a patient) who had chylothorax as severe as Rudy and survived. Based on this history, the team is very concerned about the risk of chylous fluid leakage during any future surgery.
He also said that he doesn’t know of anyone who has survived as long as Rudy with no intervention!Rudy’s current status as a post-Norwood/pre-Glenn patient is working for him and until his heart muscle function starts to deteriorate, he feels strongly that we should leave things as they are.As he put it, he isn’t wishing we could do something but rather hoping we don’t need to do anything.
It was a bit surreal to have this serious and, at times, heart-wrenching conversation as Rudy walked circles around the office mischievously playing with the light switches and trying persistently to push every button on Dr. Brian’s computer. In the middle of it all, Dr. Brian pointed to Rudy and said “if you had told me that he would one day walk into this office, I wouldn’t have believed it!”…particularly meaningful coming from Dr. Reemtsen who is not one to be overly dramatic or prone to exaggerate.
Although our conversation was frank and heavy, it was encouraging all in all.It was helpful to hear a strong, definitive opinion and Rolf and I left feeling confident we’re in a good space with Rudy.I think our perspective is slowly shifting from “anxiously waiting to do something” to “actively choosing not to do something“…a surprisingly helpful distinction. So, for now, the plan is to continue Rudy’s palliative care with a huge emphasis on quality of life, share in Dr. Brian’s hope that we won’t need to do anything and embrace the miracle that he is.
Rudy and Dr. Brian are all smilesRudy in front of the hospital Christmas tree.
Rudy was back at school on Friday and enjoyed a surprise visit from our friend (and Rudy’s fellow HLHS survivor) Jeni…
Rudy and JeniA walk on campus with Jeni and Nurse Evelyn
He and his classmates also enjoyed a surprise visit from Santa (who Rudy promptly called out as special ed aide Todd!!) Ha Ha
Ho, Ho, Ho!
Rudy experienced a first at last week’s monthly blood draw…it was the first time he sat all by himself like a pro:
Yay!! Big boy Rudy!
Thank you all for your prayers…since the cath especially. I think we’ve learned a great deal in the follow-up discussions and there is no denying that God is at work in the unconventional (a.k.a. miraculous) HLHS journey Rudy is on! Blessings to you dear friends!!
I’m cuddled up in bed still…getting ready to hit the kitchen for some fun food prep but enjoying the chill in the air and being under the covers. Rolf is getting ready to go out for his daily paddle and the big kids are still asleep sprawled out on the living room floor after a movie night. It’s a quiet start to Thanksgiving 2016 and I’m thankful for today…Wilson’s home and we’re looking forward to a fun celebration with friends later this afternoon.
So before things ramp up around here. I just want to say…Thank you friends! Thank you for your kindnesses and encouragement. Thank you for your prayers and support. Thank you for expressing your love creatively and for being the hands and feet of Christ in the life of a little half heart and his appreciative family. 🙂 We are rich!
Here’s a little glimpse into this weeks riches…
Teacher Tracy speaking Rudy’s love language with the new incentive chart she made him at school.A quick visit from Nurse Sara and Kayley was a perfect start to Thanksgiving break!……as was a trip to Kyle’s Kitchen with Kathy and Carter!Oh yeah, we’ve made a few stops at K’sK this past week…The latest being last night!Honestly, we’re out of control!But the highlight of yesterday was, by far, the SBRM Thanksgiving feast! An afternoon of yummy food, great music and special guests & volunteers!!! There was a sweet spirit of celebration among us all and Rudy was in heaven…(photo credit Dale Weber)Serenading Daphanie with big brothers!Insisting Wilson’s shakers were binoculars!Joining in on the act!The Geyling Brother Trio!Finding his groove with buddy Ric!Chillin’ some more with Ric and meeting new friends!(photo credit Dale Weber)
Happy Thanksgiving to you and yours dear ones! May today be a reminder of how much you are loved and appreciated!!
I’ve had one of those weeks that frustrate the ba-geebers out me…one of those weeks when I’ve been on the phone trying to coordinate Rudy’s care and not getting what he needs and not making any progress on the “to do” list. It’s part crAPRIA, part bureaucracy and part bad luck. Unfortunately, I’ve developed a bit of a short fuse over the years when it comes to stuff like this so it doesn’t take much to get my blood boiling. Yeah, go ahead, transfer my call, make me repeat myself over and over, let’s take this back to square ONE a-gain, better yet, don’t answer the phone, don’t return my calls, IGNORE ME! Honestly, it sounds so absurd with all the “bigger stuff” going on in our lives but this is what pushes me over the edge and I end up shaking my fists at the phone wanting to scream at the poor customer service representative on the other end “I wasn’t created for this!!!!“.
What grieves my heart is that this isn’t just an emotional reaction to a frustrating situation but that I really do struggle with “purpose” in our journey with Rudy. I shared about this struggle in a talk I gave at Westmont College a couple of years ago so this isn’t anything new but it remains a fresh wound. When the mundane frustrations in this journey overwhelm me and discontent creeps in, I long for the extraordinary things I dreamt of doing when I was young. Sometimes, when I’m really feeling down, I allow myself to feel guilty over the lack of extraordinary in my life…maybe I’m not trying hard enough or maybe I’m too afraid to “go for it” and I’m using Rudy as an excuse, etc, etc, etc…do you know what I mean?
I share this because I read a blog post this morning that speaks to this VERY ISSUE!!! I feel like God is saying to me “Here you go. I see you. I see where this week has taken you. This is for you.” Click here to read the blog in it’s entirety but two quotes that jumped out at me are these:
“You aren’t here to be extraordinary, to accomplish the extraordinary, or to experience the extraordinary. You are simply here to be fully you, limitations and all.”
The author went on to describe a situation he and his wife experienced and added: “And, for a moment, I love our limitations, because they confined us to this experience. Our limitations nudged us toward this particular mountaintop.”
It’s true! As limiting and isolating as life makes me feel sometimes, the reality is I’m confined to experiences that, as this blog can attest , are mountaintops in and of themselves.
Rudy's Beat 