We’ve made a stop at a nice KOA a few miles east of Denver with WiFi so we thought we’d post a quick update on our trip…all is going very well! Rolf the driving machine has driven the entire trip so far and is handling the beast like a pro and I’ve been maintaining the cabin and so we’re a good team. Although our RV is probably one of the oldest in the Ventura Cruise America fleet and, therefore, not the prettiest, it is running well and managed across the Rockies yesterday without a hiccup so we can’t complain. We are laughing, though, because it IS getting us where we want to go but not without alot of rattling and alot of jostling. Let’s just say it isn’t the smoothest ride we’ve ever had which makes most of us feel a little worn at the end of the day but with the roaring white noise and the constant vibration in the cabin, we figure it is a VERY happy place for Rudy! He sure seems to be enjoying it and he seriously hasn’t fussed ONCE! He has been the most content baby I have ever seen on a road trip which only confirms that this trip was the right thing to do right now. We decided to take the faster “northern” route because the weather in Colorado looked like it was going to be clear so we blazed through California and Nevada on Wednesday, Utah and a good bit of Colorado yesterday and hope to make it all the way to Lawrence today. Our stops have been purposeful and quick and the kids have managed the pace pretty well. We haven’t stopped to DO much but we sure have seen some beautiful country on a familiar route that is fun to drive….
And so the adventure continues today across Western Kansas…thank you for sharing in the journey with us!
The usual view of our house became obstructed this afternoon (actually, not a bad thing if I consider all the weeds on our lawn). We’ve taken possession the mother ship and are now configuring it for the big journey. Efforts today were a bit hampered by three VERY excited older siblings exploring every nook and cranny of the craft, but we’ll be able to get down to business now that they’re in bed and when they go off to school in the morning. We’ll grab them at lunch and then off we go!
The unusually wet and cooler weather we’ve had this winter broke and we’re enjoying spring in full force around here. Olivia snapped these pretty pics on a walk to see the ducks this weekend…
Life has picked up in full force as well with a bunch of school events and evening commitments…it’s good to be busy and in the midst of it all, Rudy just goes with the flow. Rudy had his monthly cardiology appointment a week ago Friday with Dr. Harake and things remain the same. Many have inquired whether or not Rudy’s new pulmonary hypertension drugs are making a difference and that’s just not something we’ll be able to detect in his routine echocardiograms. Dr. Harake confirmed that we’ll have to schedule another heart cath at some point before we can proceed. And so, we all wait as expected…but in the meantime, Rudy is not far from everyone’s mind down at UCLA as Dr. Harake told me that when he’s introduced to someone new in the ICU now, he’s introduced as “Rudy’s Doctor”! How cute is that!!!
We are grateful for this time, though, and see it as our window of opportunity to take the family back to Kansas over spring break to see my family. This has been my heart’s desire ever since Rudy was born and my Dad was diagnosed with brain cancer. The plan was to go after Rudy recovered from the Glenn but with it being pushed back as far as it has, even Rudy’s doctors feel like now is the time. They have given us the greenlight to go as long as we don’t fly so we’re renting a RV and plan to hit the road next week for what will, no doubt, prove to be a memorable family adventure! I’m both nervous and excited and consider it a real gift to be making this family trip WITH Rudy! Stay tuned….
As I was busy organizing Rudy’s medical supplies for the trip, the big kids asked if they could borrow Rudy’s wagon to which I said “yes” assuming they were going to use it to give each other a ride or collect treasures of some kind…it wasn’t until “after the fact” that Rolf and I found out about the natural progression of BMX stunt tricks happening in our cul-de-sac…I suppose I should pay more attention should the children ask to borrow both the wagon AND Rudy next time!
Shortly after the filming of this video, Olivia made another donation to “Locks of Love”…a cool, summer look to coincide with the warmer temps:
Another indication that time is marching on…summer will be here before we know it!
Speaking of time marching on, our soon-to-be 13 year old is becoming a young man…Wilson participated in a 30 hour fast with his church youth group this weekend to bring awareness to hunger and poverty in the world today. During the “30 Hour Famine”, the kids walked through the neighborhood collecting canned goods for local families in need, built a food pantry in our church library, served dinner to the homeless at the Rescue Mission and slept outside in cardboard boxes. I kind of braced myself for him to come home tired and grumpy after the challenge of the famine but instead he came home clearly moved by the experience, energized and upbeat. At one point, the group watched a video about kids in need in Africa and Wilson said he couldn’t help but think about Rudy and how he probably wouldn’t have survived if he had been born in a place like he saw in the video. So true…how truly blessed we are and how very much we have to share! A powerful lesson for Wilson this weekend that I pray helps shape in him a lifetime of giving!
Max turns eleven years old tonight and we’ve had fun celebrating him in a variety of ways…cupcakes with his classmates and dinner at Chili’s with the family yesterday and a special Subway sandwich delivery at school today! Max’s big birthday wish is a family day trip to Knott’s Berry Farm which we plan to take next month…something fun to look forward to…:-)
Two of the things we love most about Max is his ability to create fun and embrace his passions in life…qualities that are often displayed in our cul-de-sac:
(last weekend’s impromtu BMX stunt run)
I’m so glad Rudy has Max in his life…to show him how to live it to the fullest! Happy Birthday Maxo!!
My computer has been acting up the past couple of days and I wasn’t able to commemorate Rudy’s 17-month bday so here’s a quick, belated post! Rudy got a special treat on Monday with a visit from Earl the blogging monkey. Earl belongs to a friend from church and is a fellow wordpress blogger…he came and brought some love and smiles to Rudy and helped us celebrate 17 months!!! Well done Rudy!!! You’re doing great….
As of yesterday, Rudy is on his 2 new pulmonary hypertension drugs…Tracleer and Viagra. The Tracleer comes with ALOT of paperwork and instructions for monthly blood tests to keep tabs on his liver function as well as monthly consults with the specialty pharmacist…all very much routine but a little intimidating. The Viagra (Revatio) is dispensed every 8 hours so we’re back to a staggered med schedule which discourages me for some reason this morning. I’m sure it will all become second nature like everything else in Rudy’s care but today it’s new and different and I don’t have the energy for “new and different”…I just pray the meds work without any adverse side effects and help Rudy in his slow journey from point B to point C. It’s funny how there are days when nothing is particularly “wrong” but still it takes all you can muster to remember “right foot, left foot, right foot, left foot”…crazy stuff! Okay, I’m off to officially update our med schedule!