The parenting books told us we’d have to wait about 15 years before Rudy acted out but, once again, he has his own timeline:
Come to think of it, Olivia seems to be about ten years premature with her adolescent rebellion.
We’re wondering if there’s cause for concern. She doesn’t appear to be hanging out with the wrong crowd…
Then again, they do have some destructive behaviors…
But that’s all part of the fun of celebrating your 7th birthday!
Happy (early) Birthday to Rudy’s big sister!
Seeing as we’ve gotten a number of inquiries today about how our cardiology appointment went, I’m posting a quick update before I close up things here at the office for the week. For all of you in Santa Barbara…”Viva la Fiesta!” May you enjoy the weekend of revelry…or be nerds like us and stay far away in the serenity of your backyard.
As Trish shared, it was ironic to be at Dr. Harake’s office exactly one year later. I remember sitting there on the first Thursday in August of 2008 still trying to stop my head from spinning in our new reality, watching unknown blotches flash and pulse across the Echocardiogram screen and desperately wanting every last one explained to me. A year later and I still don’t have the foggiest idea what the blotches mean, but I know enough to sit patiently in the dark for the explanation that will come from a man who has gone from being an expert stranger to a caring guide.
Rudy has always sat still through the exams, but I discovered this was likely more a product of his delayed development than amenable behavior. Yesterday he discovered the crinkly paper covering the table and was engrossed by the way it ripped and rustled all through the exam. The first positive indicator was his weight, now up to 16lbs, 12oz, so the positive trend here continues–the bigger he is going into the Glenn, the better.
His sats read in at 82% which is also very positive. We haven’t tracked things too closely, but at the time we came home from UCLA it seemed he was more often in the low 70s. We’re going to watch this more closely as it could be a sign that his lung function is improving. Aside from this, it’s also a sign that there is not an urgent need for the Glenn. One of the things the docs will be looking for is for the sats to drop to about 65% and stay there regardless of how much oxygen he’s on, which means that he’s outgrowing the Sano shunt they put in during the Norwood. His heart will then need the Glenn so that it’s configured for better flow. Understand? I knew you would. Someday I’ll post some good diagrams of all these operations so we can all become HLHS geeks together.
Lastly, the doctors always check the right valve to make sure it isn’t leaking. There was some incidental leakage early on with Rudy, but it looked very good yesterday. On previous echos, Drs. Satou and Harake both mentioned that the pumping on the right ventricle didn’t look as “snappy” (sorry for more jargon) as they would hope, but yesterday’s looked much stronger. As Dr. Harake thought this was likely in response to meds, he adjusted things a bit further to see if this trend will continue. Keep pumping, Rudy!
In sum, it was a very positive visit that has us grateful for Rudy’s stable progress. We’re always aware that things can change quickly on this journey, but for now we’re glad that our next visit to UCLA doesn’t seem imminent. So we’ll keep enjoying the summer!
From the looks of the picture Trish just e-mailed me, it seems that there’s more fun being had at home than at the office (hard to believe considering the nutcases I get to work with). While one of the simple joys of my life is a Friday where I can go casual, Max does not seem to ascribe to this. Trish wondered why the kids were being so quiet and then discovered them in our closet with the door shut. Here’s what they do for a good time:
Am I angry that he tried on my clothes without asking? No.
Am I angry that he looks better in them than I do? You betcha!
Time to go home and unleash some Daddy discipline.
When I was a little girl, I got a TON of stomach aches…strangely occuring on Monday mornings before school and most severe at the end of holiday breaks or summer vacations! 🙂 I eventually outgrew the nervous-tummy attacks (when I graduated from college! Ha Ha) and haven’t given my strange childhood disease much thought since then until this morning when I woke up with those familiar nagging symptoms of “the nervous tummy”. It has been brewing for a week or so as I anticipated facing today but, to be honest, I’m really surprised by the way I’m feeling.
Today is the one-year anniversary of Rudy’s initial diagnosis at a routine ultrasound when I was 27 weeks pregnant. I actually expected to approach this significant date on our family’s calendar feeling deep gratitude and joy over the fact that Rudy is with us and that our family made it through what turned out to be the greatest series of challenges we’ve ever faced. The reality, though, is that I’m feeling pretty sad today…there’s a big cloud hanging overhead and that nervous tummy is just churning away. Ironically, Rudy has an appointment with his cardiologist today making the memory of our first meeting with Dr. Harake and the grim confirmation a year ago even more vivid.
Not being one to dwell on the negative and because there is so much to be thankful for and celebrate, I feel a little blind-sided by the heaviness and grief. I’m sure there are many layers to what I’m feeling today…but I think that as much as today signifies the amazing steps Rudy has made in his journey of survival and recovery; it is also a vivid reminder that he still has only half a heart, that, just like last year at this time, we have an open-heart surgery and all the unknowns associated with it ahead of us and that we still need to make the conscious effort to take life one day at a time.
This is a little tangential but…I sat on the couch yesterday evening with tears pouring down my face as I watched the news coverage of Laura Ling and Euna Lee being reunited with their families. I felt so deeply the relief that Laura’s mom must have experienced when she hugged her daughter after months of unimaginable worry and it dawned on me that that’s what’s missing…after all these months with Rudy, we haven’t had our “sigh of relief”…and given the nature of Rudy’s defect, not sure we ever will. Hmmm, I’ll think about that another day.
Note to self, though, if I had had the presence of mind or the energy to do so, I would have planned a trip to Knotts Berry Farm this week…there’s nothin’ like a Knotts Funnel Cake or two to distract you from the blues!!
We had a very calm weekend around Goleta this weekend. So calm, in fact, that we didn’t even remember until late Sunday that Rudy’s 10-month birthday was on Saturday. My convalescence had me begging off from any adventures for the short-term, but Rudy has had some notable ones of late to report.
Rudy had such a good time on his trek through the mountains with Nurse Aliza, that he was eager for more adventures. From the majestic Sierras, he headed to the idyllic wonderland that is Milwaukee where Donna took him to the Circus of America Parade, where 250 horses pulled wagons carrying the animals down the route (like those prima-donnas can’t walk?). Look closely, you’ll see him there on Donna’s arm.
Rudy came home and wondered what all the hype was surrounding Comic-Con 2009 (as did we). Fortunately, two sweet nerds friends, Micheal and Cheryl, were glad to take him along. His big brothers are green with envy at how he got up close and personal with some of their heros.
Superman sports a tribute to a true super hero!
Cheers Rudy! Here’s to many, many more months of adventure!
This may be a post to file under “too much information”, but seeing as we’ve posted 400 times in the last year it’s probably way too late for that. We had another medical procedure in our family today, but this time it wasn’t Rudy. While some of the folks in my office thought I was taking advantage of a 3-day weekend, my day started off with a 30 minute procedure on this table.
Very quick and efficient as far as doctor’s appointments go…yet permanently life-altering. Not sure if we’ve mentioned here before that a heart condition was arguably only the second biggest surprise surrounding Rudy. His penchant for beating the odds was there from the beginning given his deft maneuvering past countermeasures deemed 98% effective. But 2% probability is still probability. Shortly after Livy was born we had discussed taking more permanent steps, but that fell in a crack somewhere on “the list” between going to the dentist, updating the will and cleaning out the rain gutters. But trust me. We’re done.
Perhaps our family’s immersion in the medical world this past year has us in a place where such a procedure is discussed with surprising candor. A generation ago I suspect Daddy would have just been feeling under the weather for a day, but I learned that Trish felt differently when the kids greeted me in the driveway a couple days ago with giggles and all kinds of curious questions. Amazing how brutal things can sound when medical terminology is replaced with the lunch-table vernacular of elementary school boys and a conception of surgical precision has seemingly not progressed much past that of a Civil War field hospital.
In the consultation prior to my procedure protocol demanded that the doctor explain the finality of what one is about to undertake and assess whether the patient truly feels he is done procreating. In my case, his quick glance at the medical history alleviated any need for further questions (“Let’s see you’re 42, kids aged 12, 10, 7 and……..9 months! Sign here!”)
In one of the brochures they gave me to read, I was advised to take stock of my current offspring and determine whether my life would feel incomplete without any more. I don’t think it was to be read as a joke book, but I did find it funny. I was urged to take some time and take stock of the situation and my hopes and dreams. I have to confess, I didn’t do much of it then but this weekend of reclining and recuperating also affords some time for reflection. Final score: 3 boys, 1 girl. In terms of the Geyling family, amidst siblings who appear marginal in their ability to produce male progeny, I have done my part in producing three capable of carrying on the name. In terms of the species, I have done my part to propagate exceptional traits in my offspring—one of intelligence, creativity and rhythm; one of athleticism, charm and humor; one of grace, beauty and artistry, and one with matchless tenacity and perseverance.
You’re welcome!
PS. Note to any dinner guests in the near future—you might want to decline the peas.
Rudy had another appointment with his pediatrician yesterday and weighed in at 16lbs 7oz to which the doctor exclaimed “Rudy is getting closer to being on the growth chart!”. Woo – Hoo! In regards to “normal” baby stuff, things checked out fine…he got three immunization shots and Olivia got his lollipop. I have been delinquent in setting up appointments with the Immunologist and Endocrinologist in town and yesterday’s appointment reminded me of the pending authorizations so I came right home and got those appointments on the calendar. I don’t think there are specific concerns but because of Rudy’s history with immune deficiences and low thyroid function, it’s good to have follow-ups with these specialists…I have to admit, though, I grow weary of introducing Rudy and his medical history to so many new doctors…it feels like we’re spinning our wheels a bit filling out the same forms over and over and repeating the same information over and over for each new doctor’s records but I guess that’s part of “establishing a team”. Over time the doctors here in Santa Barbara will grow to know Rudy well and there will be security in that but for now, almost THREE months post-discharge, I still feel a little lost and scattered in the menagerie of Rudy’s care-management.
Rudy doesn’t seem any worse for the wear, though. He has been feeding well, smiling more and reaching for objects held out in front of him more and more. Our lazy days at home may be a little boring for me and the older kids, but Rudy sure loves ’em.
Rudy may be behind in many ways developmentally but no one can argue his stellar performance in the hair-growing department. After Dr. Rick accused us of blow-drying Rudy’s mane to get that frothy trademark look of his, I decided it was time to give the boy a real haircut. Wilson and Max didn’t have their first “big boy” haircuts until they were nearly 2 yrs. old…Rudy was way overdo at 9 months!!! So, with Rolf’s help holding the poor boy upright and still, the curls fell fast with every snip of my scissors. What emerged is a handsome boy looking well beyond his years (or months?). In addition, now that the rest of his hair is shorter, his bald spot in the back doesn’t look quite as obvious!
Another precious milestone under his belt!
Actually, there were TWO!!!
Lucky for us, Dr. Rick and his wife Dr. Susan were in town early this week and had time to stop by for dinner Monday evening. What fun it was to see them both and catch up while enjoying a summer BBQ rather than seeing Dr. Rick in the context of discussing Rudy’s medical condition bedside in the ICU. We tried hard not to pepper him with questions about work and the goings on at UCLA but it sounds like all are well. Although Rudy slept for a good bit of their visit, he did wake up long enough to study Dr. Rick’s face trying very hard to place him, I think. We were encouraged to hear Rick say that he thought Rudy had good color and appeared to be thriving at home. It’s SO FUN to have confirmation from someone who knows him so well!!! Rolf and I highly respect the professional relationship we have with Rudy’s medical team but we are also so very grateful for the emerging friendships within those professional boundaries…it sure helps to make the serious steps ahead in Rudy’s journey alot less intimidating!
Earlier on Monday, Rudy had therapy with Gwen and OT Chris. After the session, they assessed Rudy’s developmental level as that of a 4-month old. He’s definitely improving but we need to be prepared for the process to be a slow one. I found the information helpful…specifics to direct my prayer for Rudy in these weeks before the Glenn. The more he can master now the better but we also don’t want to overwork him…as always, a fine balance.
Our family had two eventful weekends in one. First, Trish and Olivia got to go out to Kansas for a mini family reunion with the Wilsons. The highlight was joining Grandpa and “Team Wilson” for a 5k run/walk. Rudy joined along in spirit as G’pa Dick competed with a pair of Rudy’s “running socks” pinned to his number. Team Wilson dominated the course with Wilsons in the front of the pack, holding steady in the middle and bringing up the rear throughout the race and EVERYONE finished with a smile on his/her face. G’pa won bragging rights as the #1 male walker of the day with his good friend Bob coming in a close second! Olivia was determined to walk too and finished despite the heat and humidity…not quite sure what she thought of humidity (ha). She also experienced her first Midwest thunderstorm AND the thrill of catching never-before-seen lightning bugs!
Back here in Goleta we had a full weekend of our own. Before I get into the details I have to mention the Rescue Mission graduation on Saturday night. We celebrated the achievements of a dozen heroes who completed their twelve months in the recovery program. Thanks Heather, Jessica, Kelly, Nanci, Rachel, Andrew, Ben, Cal, Edward, Jay, Morris, and Sergio for being examples of how intimidating struggles are best approached by leaning on the people God has placed around you and by taking things one day at a time. I love what I do in that it gets me a front row seat to watch lives transformed.
Stepping back from the profound, Wilson and Max declared this weekend to be a “DUDE-CATION” as all the females in the family had vacated the premesis. I was glad they took time to brief Rudy on the elaborate wild-man rites undertaken when boys find themselves separate from girls for extended periods of time (because I needed a refresher). Turns out there’s quite a bit of freedom to be taken with bodily functions and noises–and more extensive and detailed conversations regarding them than I ever thought.
On a true dude-cation, all meals must be eaten without utensils. Considering there was toast and sandwiches in good supply, this was easily done, but I thought there would be an exception made when it was time for lasagna. Turns out Max’s commitment runs deep, even when the melted cheese singed his fingers.
You laugh a lot on a dude-cation, which is always welcome. True dudes also laugh in the face of danger. While anyone can enter the pool the conventional way, it’s much more fun to do something daring:
OK, I know. Responsible parents wouldn’t let their kids do this, but after you let them roll your six-day-old down into the OR for heart surgery your notion of what’s dangerous gets altered. Not to mention, it just plain ROCKS! Rest easy, there’s no picture of Rudy engaging in the ceremonial Dude-cation roof leap…yet. I guess you’ll be sending your kids to someone else’s house when you go out of town for the weekend.
Even though some kids with heart defects can’t go to upper elevations, Rudy went on a high-altitude adventure (kind of). Nurse Aliza spent the last few weeks hiking the John Muir Trail and took him along.
Thanks for sporting your handsome Rudy bracelet, Aliza–Rudy and Lance make good company. If anyone else happens to take Rudy on an adventure, we’d love to hear about it.
Rudy's Beat 