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…
Lake Los Carneros
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!
Road trip? What's a road trip?"This is funny, Mommy""Where's my paci?""Can I take my paci?"
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!!
Oops! A little too close even for Max's comfort level...Ribs! A Max favorite...Max 'n RudyMax & the Chili's babesMax & his sibsMarch 10, 2010
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….
Earl was very curious about all of Rudy's equipment...Rudy's paci-monkey was a big hit!March 1, 2010 - 17 months old
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!
A big thanks to everyone for all the birthday greetings and well-wishes. My birthday officially marks the start of the Geyling “birthday season” as mine is in February, Max’s is in March, Wilson’s is in April and Rolf’s is in May! Poor Livy was all by herself in September until Rudy came along and added October to the line-up! Ha Ha At least we have alot of upcoming activity to fill our time as we wait for news of Rudy’s surgery. Unfortunately, Rudy has yet to start the two new meds prescribed THREE WEEKS ago due to a few challenges in obtaining the proper authorizations, etc, etc, etc…We see Dr. Harake again on Friday so surely we’ll get it all squared away by then.
In the meantime, we thought you’d enjoy seeing some of our recent miscellaneous fun…
Whether he is in his over-crowded day crib or on the floor, Rudy's preferred sleeping position is spread eagle! Olivia giving Rudy his nebulizer medication...Rudy learning the finer points of GameBoy from Max!
Max and Olivia on a Girl Scout Family Snow Trip!
(The following “cool pics” are courtesy of Greg Lawler!)
All smiles in the snow!!!
JOY
(As a fully trained Girl Scout Leader, I must add a disclaimer that the following recorded activity is not sanctioned by Girl Scouts of America OR
Brownie Troop #50649 due to the risk factor involved. This is what happens when DADS, after watching too much Olympic snow cross, chaparone. It was, however, the favorite part of the trip for our little dare devils and in their words “AWESOME”.)
Big Air!
Wilson was the substitute drummer at church this weekend! I sent Max up front to catch a little footage of Wilson’s debut…the video is a little bouncy because Max got into the moment and started dancing as he filmed! 🙂 Oh well…it’s fun nonetheless!
We were told not to make a big deal of things today, but sometimes you have to bend the rules just a little bit. We thought about bursting forth in a festive chorus, but realized that Rudy couldn’t sing along. Instead, we mustered the creativity and precision to come up with this display. OK, so we had to wake Rudy up from a nap and the camera work leaves a bit to be desired, but if you set that aside it begins to evoke the pagentry of the opening ceremony in Beijing. Maybe just a little.
The journey of having an ill child is one of discovery. It starts with suddenly being made aware of a condition (like HLHS) you never even knew existed and from there the new discoveries just keep coming–complications, medications, surgical procedures, medical specialities and hospital survival secrets. Unfortunately, one also discovers such levels of soul-sucking beauracracy that bring forth speculation of whether Dante miscounted. We try not to dwell on the more frustrating dealings of managed care, medical billing and insurance approvals but dealing with these details does take up significant amounts of weekly time and energy. Bottom line, we are so grateful that we’re well provided for–we don’t have to stress about having coverage, even if getting all the parts lined up is a continual chore.
So, as this week had the usual share of goose-chases and phone trees, I thought I’d focus on the positive and give credit where it’s due. I recently had the joy of dealing with an effective, efficient and very compassionate beauracracy. None other than the California Department of Motor Vehicles. After months of taking Rudy out in public with his stroller, tanks and gear it suddenly dawned on us that the powers that be might have had us in mind when they created all of those disabled parking spots we were always walking past.
It wasn’t that hard to download the forms and get them signed by our doctor, but my actions conveyed little faith on that Friday morning when I headed off to see what gives. I had a book, the newspaper and even stopped for a large coffee to get me through the inevitable wait.
It took less than four minutes.
The friendly reception lady looked the form over, punched a couple keys on her computer, opened her drawer, handed me the golden (OK, blue) ticket and told me the renewal would arrive in my mailbox in May 2011. It was hard to conceal my shock (not to mention my reading material) and I uttered amazement of how quick and easy this all was. She said, “What do you think this is, crApria?”…No she didn’t say that, but did suggest that I should enjoy my coffee and newspaper in nicer environs than the Goleta DMV.
It was easy. Easy is good. The DMV was easy, therefore the DMV is good. I love the DMV. Now we only need to remember to use our handy placard. On more than a few occasions we’ve driven circles around parking lots like all the little people do before we remember that Rudy gets the VIP treatment!
Rudy is very proud of his placard.It's good being a VIP!
Greg Lawler was an award winner in Specialty Color Services’ Annual Photo Contest. Greg is a good friend, generous soul and talented photographer. I’m not saying he doesn’t have a lovely wife and very cute kids, but pictures he takes of them don’t seem to win any awards. It takes subjects like this to make that happen.
It’s certainly hard to top last year’s Valentine greetings but we’re going to try with our version of “Lean On Me”. Given all the “leaning” we’ve been doing the past 18 months, we’re eager to return the favor…”so just call on us, brother (and sister) when you need a friend. We all need somebody to lean on. 🙂
Happy Valentine’s Day!!
P.S. A BIG thank you to everyone who ordered a “Rudy’s Heart” pendant! Together we raised an initial gift of over $500.00 for Camp del Corazon! Whoo-Hoo!!
Dr. Harake handed us a prescription at our appointment last Friday for two new meds and wrote on the bottom of it in big, block letters “PULMONARY HYPERTENSION!”. Never before has he written SO CLEARLY the diagnosis for which a drug is being prescribed but apparently this time there is need for clarification as one of Rudy’s new meds is Viagra. Yep, you heard me right and many of you heart moms out there can relate to the awkward interaction one can have with the pharmacist when trying to fill an order of Viagra for a baby. Here’s a little trivia for you…the drug was originally developed for it’s vessel dialating function and when some lucky guinea pig discovered it’s positive side effect, it quickly began being marketed for, well, you know…. Poor Viagra is a bit type-cast because it actually serves a very important medical purpose in many heart and lung patients. So, it’s off to the pharmacy we go with two new meds on our list bringing our grand total back up to 13 daily meds. Bummer! I guess Rudy’s list of meds will always be somewhat fluid but adding meds always feels a bit like taking steps backward instead of forward.
After talking with Dr. Harake (SB) at our appointment and then with Dr. Dan (UCLA) over the weekend, the plan for now is to wait a couple of months for these new meds to address some blood flow resistance issues in the lungs. The high pulmonary resistance makes the Glenn a very risky operation for Rudy as not enough blood would make it through his lungs to sustain him. This is actually a seperate issue from Rudy’s low oxygenation (which is due to damage or disease the lungs are trying to recover from); but the physiology of it all would suggest that if the blood flow is allowed to freely flow then the oxygen sats could be influenced. I don’t quite understand it all yet but the main point is we are going to wait…and the fact that we can wait is a blessing we don’t want to overlook. The timing of the Glenn in HLHS patients is often determined by heart failure and doctors are forced to do the surgery despite any critical concerns about the lungs. As most Glenns typically happen around 4 to 6 months, we are amazed that Rudy’s trusty single ventricle keeps beating without any signs of failure even after 16 months. Since we’ve been going month-to-month since June, even knowing we have a 2 month timeline is more definition than we’ve ever been given so we’ll work with it.
Speaking of working, Rudy continues to try hard in his therapy sessions and we’re working with objects that are a bit heavier to increase his strength. Wooden spoons are the “barbell” of choice these days:
Thank you for standing alongside us in this and for standing by as we wait this thing out…we will most certainly keep you posted!
Rudy's Beat 