We’re in a bit of a frenzy in these parts with the typical need to get a lot of things done before one heads out for a vacation. Between school, work, household and activities it does feel like all of us will have very full schedules up until departure next Thursday. We’re excited. Some of us are packing. Some of us were packed three weeks ago (guess who–also the same sick person who has the Valentines ready to go). Some of us have yet to pack (and won’t until after sundown Wednesday). Lots of ground to cover between now and then but that makes the prospect of settling into an airplane seat and breathing a sigh of relief seem all the more exciting.
In the meantime, there’s still the occasional impromptu moment where the kids are goofing around after dinner. I hear there’s pretty good entertainment in Orlando, but I’m not sure if they can top this:
There’s so much in store for us in the weeks ahead, but more important than all the cool attractions is the fact that we get to experience them as a family. Rudy is one of those kids that can’t actually articulate his own wish so when the Make-A-Wish granters interviewed us, we both felt clearly that his would involve the siblings he loves so deeply. There’s nothing like watching him light up even for the silly Chubby routine. Here’s looking forward to a week’s worth of golden moments!
Around dinner time yesterday they asked if we would mind moving. We had to laugh as we got welcomed into our old stomping grounds and rolled right into our old room (people know where to find us). We had a pretty peaceful night–so much so that in rounds this morning they decided that we could go home early! So, the wheels are in motion. Allowing for standard hospital-time delays we should be heading out mid-afternoon.
A well-meaning child life volunteer stopped by yesterday with a really cool action figure…that scared the heck out of Rudy. We devised a much better alternative this morning with “Happy Glove Head” (TM). Thanks to the nifty expensive telescoping exam light we attached it to, it provides hours of entertainment and therapy!
I don’t think our family has enjoyed itself more celebrating Rudy’s birthday this year. The Heart Walk was such fun because it demonstrated the community that has surrounded us. To give an idea, we bought sixty Rudy-Blue balloons to hand out to our walkers…and we ran out! After all the activity on Saturday, Rudy’s actual birthday passed rather uneventfully. As the schedule turns out, Rudy doesn’t have school on Mondays which serves him well as he usually sleeps in after weekends full of sibling fun.
It had all the makings of an uneventful, mellow day (and pretty much was) save for the last-minute call for his monthly visit to the lab. Turns out the only phlebotomist who can get to his veins was in so they called to get it in. I guess the birthday treat is that it only took her one stick, but I’m not sure Rudy saw the upside.
Seriously?! On my birthday?!. 😦
Our beautiful baby boy
Amidst all the activity that goes into celebrating Rudy’s birthday (it always falls on a really big week for us with the Heart Walk and the Rescue Mission’s “Back to the Bayou” Benefit), I try to take some time to go back four years into the blog posts to get a reminder of how far he’s come. Amazing how quickly all the emotions of the first week of his life can come back. (If you’re interested in walking down memory lane, click here) Forgive me in advance if we publish a few more looks back this week. The memories of it all (especially surgery day) are so visceral that even now they require some processing. Rudy’s come a long way and we’re so glad for the many people who have walked with us–whether you were there from the beginning or joined us later on.
The emotions of his diagnosis and birth were evoked even more yesterday as we learned the story of Greg and Kara Olsen of the Carolina Panthers who are right where we were four years ago. Praying for them as they walk the HLHS journey. You can watch their story here: video-heart-of-the-matter
Last weekend we did a much-needed cleaning of the garage. In the past, Rudy would scoot down the hallway and would be content to sit on the stoop to take in the action. But this time he wanted to be part of things so he got himself down the stoop and had fun scooting underfoot. Somewhere while we were busy moving stuff around, he spotted the great wide open, tore free from his O2 tube and made a break for it!
I’m outta here!!!
All the way down to the curb across all that brick and concrete; shredding his diaper and oblivious to the abrasions he was inflicting on his legs and bum with each scootch–yelling “bye-bye” louder and louder as the mailbox came in view.
How far we’ve come.
This is a milestone week for us as May 7th is the day Rudy came home from the hospital. (astute Rudy fans might recall the first release being in April, but since we had to return shortly thereafter for a second stint we celebrate the day he came home for good.) Looking at Greg’s discharge day slide show never gets old, especially when we see how different the bouncy 3 1/2yr old is from the fragile little guy who came home after seven months in the ICU.
Today also marks the start of Nurses’ Week. It’s hard to put into words what we feel about nurses–they have become such a part of our life–from the ones who took care of Rudy for continuous 12 hour shifts; to the ones who pull shifts at our house; to the ones who pull together all those details and approvals; to the dear friends who have no formal responsibility but are always available for a quick consult when something doesn’t look right. We love nurses–if you want to see some of the finest, scroll down to the second video below Greg’s discharge slide show.
With the days counting down to the cath, Rudy’s been spending most of his time at home. We’re probably not as obsessive about it as we could be, but with all that goes into getting a cath date (lab and doc schedules) we’d hate to see any delays caused due to Rudy catching a bug. As it was perhaps the only weekend this year where we’ve had to endure a dose of that brutal Santa Barbara winter (read 55F with intermittent showers), he hasn’t been lonely indoors. So, I just thought we’d give a few glimpses of our regular weekend at home.
Rudy’s last day out was Thursday for school. His class, the “Bear Club”, went on a walk to the neighborhood market and the teachers spotted a little good luck gift to send him off with:
Thank you, Bear Club buddies!
Being home bound isn’t all that bad. Especially when you’re as easy to please as Rudy. Most days, he’ll go into the kitchen and find himself a cup to stick over his hand and carry around most of the day. Some days a cup is hard to find, but this time of year it’s pretty easy to find a box of Girl Scout Cookies in the cupboard. Rudy found one yesterday and, after quickly tossing aside the cookies, he held on to the box for several hours–even through his nap.
Nothin like a teddy box! So much for all the developmentally appropriate toys we were seduced into buying.
Housebound or not, we still expect the kids to help out with chores. It’s amazing how even Rudy can pitch in and be surprisingly helpful. Check out this video of him helping us polishing the kitchen floor.
Max was scarce this weekend as he wowed audiences in the GVJH production of 42nd Street. In between playing to three packed houses, he found time to entertain and educate his little brother in fine art of zerberts. Take it away, Max!
Thanks so much for checking in and for all the kind notes and comments. It was a full and fun weekend–stay tuned for the eventful week ahead.
It’s hard to describe the feelings that come with the countdown to a hospital date. The March 21st cath was scheduled on the books sometime before Christmas. When it’s months away, it feels kind of good to have a milestone to shoot for–an event where there may be some progress, some new information and maybe a new game plan. But the closer the date looms, the more ominous it gets. At about a month out, Trish and I both notice that things start getting more complicated. There are times when I just wish it would come so we could be done with waiting–and then I remember that this involves Rudy getting strapped to a table, needles, anesthesia and a bunch of instruments getting stuck into a very delicate beating heart. No matter how balanced one tries to be, it’s unavoidable to get your hopes up that it will end with a good report–maybe because the bad reports still sting so badly even when you think you did the best you could to prepare for the worst and not get your hopes up. As a friend recently wrote on her blog, you can get “under-sensitized” on this journey and go into it thinking “No big deal. It’s not surgery. It’s just a cath”–losing sight of the fact that no normal parent in their right mind would be dismissive of this.
There’s a weight that comes with the wait. It starts heavy and just grows. Not sure there’s any way to lighten it but having a full schedule to occupy us sure helps. At our best, it feels like we’re being defiant and not letting this weight crush us from living our lives. Or maybe we’re not all that tough and it’s just fear driving us to do anything we can to distract ourselves. It’s hard to come up with ways to lighten things at 4am, but it’s surprising how even in the midst of an otherwise fun and consuming activity, the reminder of what’s on the horizon can hit you with a pang, a gasp or a shiver.
That brings us down to one week to go, when all of this stuff can cycle around in your brain at warp speed. I think we do a pretty good job of holding things together, but to be honest there’s a lot of turmoil just under the surface. Productivity in the house and work goes down as it gets increasingly hard to focus. Emotions cause you to say things you might not normally say, or misinterpret what someone else might be saying. While staring into space is not all that constructive,a few stupid spousal spats make the case that it might have been a wiser activity to maintain. The whole intensity is raised a notch when it just so happens that several of the families we’re close to in the blog world have all had hospital episodes this week. Paxton had a big surgery today. Owen had a cath this week. Josh had one last week. Moriah’s headed in for some stuff this week too. Always a comfort to know you’re not the only ones going through this stuff, but with that come the twists and turns that anyone walking with someone in these circumstances feels.
That’s not to say it’s been all that somber. Life goes on. There’s been good reason to have fun and we’ve drunk deep. The weight’s there–not sure there’s much we can do about that. So instead of thinking too much about whether we’re acting in defiance or running in fear, we’ve had fun just doing life. Funny is still funny and fun is still fun. What’s coming is coming, but there’s still such beauty in life.
Max turned 13. All that charm now unleashed with true teenager cred! Life and weekends are so full right now we really couldn’t schedule a party (and he wasn’t so sure 13 yr olds do parties), but since we had to be in LA for his birthday we made an adventure. He got to choose our lunch stop so it was our introduction to “Fab Dogs” as seen on Diners, Drive-Ins and Dives on the Food Network. More ways to have a hot dog than you ever imagined. All kinds of nutritional wrong, but as Guy Fieri would say “FULL THROTTLE!”
March 10, 2012 - Max's 13th Birthday lunch at Fab Dogs in Reseda.
Our primary reason for being in LA was to celebrate Lisa and Daniel’s wedding! A joyful day with a family that’s very special to us. Livy was very honored to be the flower girl and fulfilled her obligations beautifully. Trish was asked to sing and Wilson and Max backed her up for a memorable performance.
March 10, 2012 - Congratulations Lisa and Daniel!!! Good job flower girl Olivia 🙂
Max’s birthday celebration continued the next day with a stop at Universal Studios.
March 11, 2012 - A belated birthday celebration at Universal Studios Hollywood!Rudy was restricted from going on many of the attractions at Universal Studios because of the pyrotechnic special effects and jarring movements so he and Trish made the rounds to many of the characters. Uh, yeah, he wasn't a big fan. 🙂
Back in Santa Barbara, the events continued:
March 12, 2012 - Girl Scout 100th Birthday! Rudy loved being with the girls in the park but was NOT keen on the council-wide friendship circle ceremony!
Down time? Not that much right now…but the daily routine can be pretty rich:
Rudy and his gal pal Stella...can't miss an opportunity to post these two cuties together!Rudy going to school this week..."hands on the window" is a daily bus ritual.
More activity to come this week as Oma and Opa are about to land and they’ll find that taking interest in their grand kids will involve making some choices between the Jr. High Musical, drumline performances, surf lessons, an elementary school track meet, a church talent show and the regular Rudy routine.
We appreciate your prayers for our family as we count down to next Wednesday.
Well, it’s that special day again. The day we share love and a goofy tradition or two. Lots of activity today as we’re participating in the K-LITE radiothon again for the Rescue Mission’s Bethel House. Really fun and for a good cause. (If you’re in SB tune it at 101.7 FM and call (805) 879-5483 to pledge and dedicate a song to your Valentine!) Trish started the day on the radio and I’m headed there myself in a bit. A great day filled with inspiring stories of women in recovery. More info, click here: http://www.sbrm.org
But there’s are some special memories this day will always hold for me. Valentine’s Day in 2009 was one of those quiet Sundays during the seven-month stretch we sat with Rudy in the CTICU at UCLA. The months were marked by small developments (foot wiggles, brow furrows, etc.) that only parents holding a vigil would notice. That day, I remember making eye contact with Rudy for awhile, when suddenly I noticed just the slightest twinkle. I managed to snap a picture and Nurse Amy verified that we had captured Rudy’s first smile–despite all the wires, tubes and the monster bruise on his arm from an IV gone wrong. One of my all-time favorite pictures and easily my most memorable Valentine present!
The best Valentine ever--RUDY'S FIRST SMILE!!!!!!
From here, there’s probably no appropriate segue to this year’s Valentine greeting from our kids. One favorite family tradition (remember this and this). Submitted for your enjoyment:
Happy, Happy Heart Day from ALL the Geylings to you!
There’s nothing like a good Christmas party. We enjoyed a memorable one last night. We couldn’t have asked for a more beautiful home with more dear people (the Rescue Mission board). But the quality entertainment really made the soiree. Take a look:
Can’t get enough of the prodigy (we can’t) here’s another clip. He seems to be mesmerized by his own talent!
There’s still a few available bookings during the holiday season, but act fast…
Life’s been running full lately with school, work, football and band. Makes the evenings at home few and far between, but today we got out in the cul de sac and did our thing. Rudy loves rolling himself around…likes it even better if Max does high speed fly-bys on the scooter.
This weekend included a lot football (as they often seem to this time of year). It started with cheering for Wilson as the band played for the Homecoming game at Dos Pueblos. We kept it up with Max’s YFL game on Saturday afternoon. Even all that time in the sun didn’t squelch a pickup game from breaking out on the grass after a late lunch at Carl’s Jr. Rudy got so excited watching that he HAD to join in.
Get that kid a helmet and pads. He’d make a tough linebacker!
Rudy's Beat 