Okay, all that should be in school in the Geyling household are safely tucked in their classrooms and the major “closet purge” and “spring cleaning” here at home has begun! Rudy is sitting in his bouncy chair and comes with me from room to room wondering what in the world I’m doing.
We tried to recreate the first day of school fanfare for Max this morning…Wilson and Livy were kind of over it but Max was his typical enthusiastic self. We’re relieved his fever finally broke and we continue to pray Rudy doesn’t get the virus as fevers have a more complicated effect on him.
Okay, Rudy and I are going to go figure out how to use the carpet cleaner in preparation for tomorrow’s home project…another new and exciting experience for the little guy!
…well, for half of our litter anyway. Poor Max has been battling a fever on and off since Friday and woke up with another this morning so all the hustle and bustle of the past week getting ready for school culminated in big tears when we told Max he couldn’t go to school today…he was crushed. We told him to look on the bright side – at least the pressure of “perfect attendance” is off his back! It is a bummer and not how he wanted to start off 5th grade but we hope to get him rested up, in to see the doctor this afternoon and past this bug lickety-split. Olivia was a little timid when we dropped her off at the elementary school by herself but she gave us a big hug and walked slowly onto the playground in search of a familiar face. Both Olivia and Max have teachers this year that we know well and who know of our family’s situation with Rudy so we’re certain they are in great hands for what could prove to be another wacky year of adjustment.
And then there is Rudy…our little goofball continues to charm with his ever-growing smile which is sporting TWO new teeth. He has worked hard to cut those teeth the past couple of weeks chewing on anything he could get his hand on. We were warned not to let pets chew on Rudy’s various tubes and cords to his equipment but we didn’t expect to have issues with Rudy doing the chewing…like there isn’t enough to keep an eye on!
Since our last post, Rudy saw the Endocrinologist and Immunologist in town. No new information emerged as a result of these visits…just initial consults to review his history and get Rudy on their books. There were some changes made to his feeding schedule and respiratory treatments that leave us with a few questions but, all in all, I think we’re on the right track with his care. We still don’t have a specific time sheduled for the Glenn…Rudy’s next appointment with the cardiologist is in early September so hopefully we’ll know more then. We continue to pray for physical growth and strength (especially for his lungs and muscles) and that Rudy would start to tolerate baby food. Oh my, speaking of food…I forgot to feed the poor boy his mid-morning bottle and it’s now time for lunch! I’ve gotta run…the fast pace of the school year has begun!
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!
Rudy's Beat 