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…
(The following “cool pics” are courtesy of Greg Lawler!)
(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”.)
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!
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. 🙂
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!
One of the benefits of being home with Rudy these past 9 months is the chance I’ve had to s-l-o-w-l-y reacquaint myself with my shop after a year-long hiatus. I’ve always enjoyed the creative process of my jewelry making and silversmithing but, as with everything, it has taken on even greater meaning for me since having Rudy home.
Shortly after Rudy’s diagnosis, I was inspired to make a special pendant that represents Rudy’s half (but still beautiful) heart…a perfect companion to the “Mama’s Heart” design I was already offering on my website. I’m finally ready to unveil “Rudy’s Heart” and I wanted our Rudy’s Beat friends to be the first to see it! 🙂 I’m making them available for purchase on my website www.silverbytrish.com with our profit on each sale going to Camp del Corazon…a wonderful organization that provides rich camp experiences for children living with heart disease. Rudy will be eligible to go the summer of 2015!! Check out their site when you have a minute www.campdelcorazon.org. It’s an organization we feel drawn to support not only because of the people for whom it exists but also because of the people who are involved…many of Rudy’s CT doctors and nurses volunteer their time to be counselors at the camp each year so the children are not only assured a FUN time but also a SAFE one as fully-equipped infirmaries are set up at camp to care for the kids’ special health needs.
HLHS may define a big part of who Rudy is and how it affects our son may be completely out of our control but there is something empowering about the process of creating (literally forming with my hands) our own symbol of HLHS and using it to help bring a little joy into the lives of kids like Rudy. As the character Flint Lockwood says in Cloudy with a Chance of Meatballs …”We’ve got diem to carpe!” And seize it we will…