It’s hard to believe another Father’s Day is quickly coming to a close!  In typical Geyling fashion, we enjoyed a simple celebration at home this afternoon after a fun morning at church.  Our day may have been filled with simple pleasures (i.e. pool time with friends, Fritos Bean Dip! and a Carvel ice cream cake) but there is also a far-from-simple, profound feeling of gratitude that isn’t overlooked on a day like today.  Gratitude for our family, in particular, and the many ways I see God’s grace and love  reflected in the kids…through their unique personalities, their individual gifts, their sensitivity toward God and others less fortunate and the different insights about our world they offer.  Rolf and I are truly blessed and I’m grateful to God that those blessings far outweigh the challenges and concerns that weigh heaviest on our hearts.

I’m pretty sure I’ve mentioned it before but my appreciation for Rolf grew with the arrival of each one of our kids…I fell in love with him all over again when he became a dad and demonstrated his commitment to our life together on a much deeper level with creativity and total engagement.  We have partnered well through the twists & turns of our life together and had some fun along the way.  I am grateful for his love, his hard work to provide for our family and literally build a roof over our heads and for his commitment to serve our community.  I’m glad I’m not the only one who recognizes his special qualities…click here and check out this special honor.

I’m also incredibly grateful on this Father’s Day for the fathers with whom God has blessed my life…the father I gained when I married Rolf…a man who is very thoughtful in his affirmation and exemplifies responsibility, commitment and loyalty.

And, my Dad who also modeled a very strong sense of responsibility and commitment as well as a the gift of discipline which were all enhanced by his friendly demeanor and contagious laugh,

Although cancer took my dad much too soon, my love and appreciation for him remain a constant especially as I grow in my understanding of what it requires to be a parent…there are many things I choose to do as a parent that can be traced back to him.  🙂

Ah, there is much to be grateful for and celebrate in the men that have filled my life…blessings I pray I never take for granted!

Rolf sporting the traditional handmade Father’s Day Tshirt…He’s definitely our SUP (Stand Up Paddleboard) King!

It is SO RIGHT for us to take the time to stop and honor the men in our lives that work hard to make right choices with the best interest of those they love in mind.  Well done men and may you know how very much our world is richer because of individuals like you!  Happy Father’s Day to all the Dads out there!

Gosh, sorry we haven’t posted in awhile…truth be told, I’ve been waiting to post the sleep study results but as of Friday, Rudy’s pulmonologist at UCLA hadn’t heard back from the folks at CHLA with the report yet so we’re still waiting.  Hopefully we’ll hear back this week.  I’m also waiting to hear confirmation on Rudy’s heart cath date in July so there are still a number of details that are up in the air for our family regarding the summer schedule which is making it hard for this type A personality to relax.  🙂  We have a day trip to UCLA on July 9th for a couple of appointments and then again later in the month for the heart cath with appts with Rudy’s specialists here in Santa Barbara in between so July will be full with medical stuff but I’m working hard to keep the rest of the summer medical appointment/procedure-free.

We celebrated another friend’s wedding, Mother’s Day, a couple of end-of-the-year school performances AND Rolf’s Birthday since we posted last!!!  We sure haven’t been lacking in celebrations this spring!  🙂  Rudy has hung in there through most of it but he sure prefers hanging out at home…especially now that we’re spending more time outdoors in our backyard.  Rudy is content to play in his wading pool for hours (if we’d let him) and laughs his big belly laugh while watching the big kids play their crazy games in the big pool.  He’s getting pretty cocky on his little trike too and likes to head full speed down the incline of our driveway into the cul-de-sac!  I have to admit that I’m beginning to wonder if the increase in physical activity puts too much strain on his half a heart…a heart-mom worry that I haven’t really experienced yet…but then again, I’m not sure he’d have it any other way and the quality of life benefit is certainly abundant so I try to tuck away the worry and trust God, as always, for every detail.

Here’s a quick look at some of the fun…

Okay, I’ll stop with the miscellaneous post for now…hopefully we’ll have something specific to report this week from UCLA!  Ever grateful…

From the start of our journey with Rudy, Rolf and I have attempted to be honest with the big kids and not keep important information from them that they are able to understand even if that information is bad news or scary.  It has been important for all of us to face the reality of our situation head-on and, hopefully, navigate all the ups and downs as healthy as possible.  I’d like to say Rolf and I have been really good at sitting down with the kids and “updating” them as needed with open discussions about how Rudy is doing and asking them how they are doing but the reality is that doesn’t happen very often.  The kids are usually informed by the quick call home after a hospital procedure or the mention of a dr. appt at the dinner table or, frankly, by posts on Rudy’s Beat and the intentional dialogue usually happens one-on-one during car rides from school or to an activity.  Sometimes I make an attempt to talk to the big kids about Rudy and they aren’t in the mood.  So, you charge along in the fast-paced life of a family that is growing up thinking you have a good handle on how everyone is doing and what everyone is feeling and then, out of the blue,  you catch a glimpse of your kids…a deeper insight into their thoughts…and you realize the impact of life’s unique experiences runs so much deeper than you hear about in those quick “check-ins” from time to time.

Sometimes it can come indirectly like when Olivia asked me if there are any “nursing” summer camps out there that she could sign up for this summer!!!  (Nursing summer camps? Yikes!  I have no idea)  Gee, I wonder what’s shaping that interest?

And sometimes it can come directly through an English writing assignment  that ends up getting published in the school newspaper as Max’s did last week:

Here, let me zoom in a bit…it’s worth a read:

I so love that Max chose to write this article…I don’t think I’ve ever had the opportunity to hear his take on Rudy like this and a couple of things surprised me but mostly I love his “shout out” to Rudy’s doctors and nurses (timely, with this being “Nurse Appreciation Week”!) and his assessment that, in the end, the extra work involved in caring for Rudy is all worth it!  Who knows, maybe we have a future blogger or two or three in our midst?!  Ha 🙂  I hung Max’s article on the wall next to Rudy’s crib…a helpful reminder that the big kids are thinking and feeling and processing more than I give them credit for and prayer for their “heart health” is just as important as for Rudy’s :).

Rudy saw Dr. Harake (SB cardiologist) yesterday and he would like to get Rudy’s next heart cath on the calendar for sometime in July.  Right now the available dates are possibly July 18th but it will most likely be scheduled for July 31st or August 1st.  He hopes to go in and devote the whole time to coiling collateral veins so it could be another long session in the cath lab for all involved.  For some reason, I had it in my head that we would pursue the next cath in the fall so I was a little surprised by the summer target date…it doesn’t really matter when we do it but this will be a helpful date to solidify as I work to chart out our summer schedule.  We don’t have any big travel plans but between Wilson’s summer school classes at SB City College, Max’s desire to participate in a theater camp and Livy’s plan to live in the water, the summer is already starting to fill up!  Ha Ha

We’ll also need to look closely at any plans we may have to wean Rudy off the trach if he passes the sleep study.  It’s so much easier to anesthetize and vent Rudy during surgical procedures when he’s trached so it could be wise to hold off on weaning him with a procedure coming up.  There are a ton of “what ifs” in that scenario and may even be a moot point if he doesn’t pass the sleep study so we won’t worry about it now but, I admit, the thought of delaying decannulation is disappointing.  We’ll see…

Rudy sees the urologist tomorrow so we’ll have more to report then…in the meantime, have a happy day!

As suspected it took me a few days to recover from last Monday’s trip to Los Angeles and short night’s sleep…Rudy didn’t seem to skip a beat!  Ha Ha  It’s kind of sad when your son with half a heart has more energy than you do.  🙂  Needless to say, I’ve had a quieter week trying to catch up on life here at home.  We typically don’t get the sleep study results for a few weeks so we need to wait a bit but I’m so relieved they were able to get a good stretch of data during the study that I can live with whatever the outcome may be.  I did, however, buy this floatie swimsuit for Rudy at WalMart on our way home from the hospital in faith that he’ll be able to swim in our pool this summer!!

Speaking of the pool, yesterday was the official opening of the 2012 swim season here at the Geylings!  The water is FREEZING but that didn’t stop the big kids from spending the afternoon engaged in swimming and pool-related activities!!  Even Rudy took a spin on the stand-up paddle (SUP) board…

This next week is a full one with our monthly visit to the cardiologist and our consult with a urologist in town to discuss Rudy’s, shall we say, lopsided bits and pieces.  His undescended testie may require surgical intervention but we’re praying the “ball will drop” as our friend Kim so eloquently put it and all will be well down under for the sweet boy.  We’re looking forward to our annual tradition of hosting the kids’ teachers for dinner (we get to include Rudy’s teachers this year!!) and a dear friend’s wedding here in town.  I love weeks that are loaded with things to celebrate!!!  Thank you again, friends, for sharing in the celebrations and concerns of this journey with us.  We’ll update as soon as we hear anything about the sleep study results.  Blessings…

Grandma Jo headed back home to Kansas yesterday and I have today (Sunday) to catch up on some paperwork and pack for Rudy’s and my trip to L.A. bright and early tomorrow.  Rudy has an appointment with pulmonology at UCLA tomorrow morning and then his sleep study at CHLA Monday night so we plan to make a day of it and hang out with some friends in between!  🙂  It will be a long day but my goal is to keep Rudy up and active ALL DAY so he’ll be too exhausted to fight the sleep study.  I don’t know, though, we may be fighting the grumpies with Rudy all week even without the sleep study since he’ll be going through “grandparent withdrawal”!  With Oma & Opa and Grandma’s visits happening back-to-back, Rudy has had the luxury of non-stop grandparent attention for the last few weeks!  This won’t be an easy week for him going cold-turkey and all.  🙂  To add insult to injury, our poor little guy gets to add another specialist to his long list…Rudy’s pediatrician feels there may be a little problem (nothing serious but could require surgery) with his bits and pieces and wants us to take him to see a urologist.  I’ll call to get that appointment on the books when we return from Los Angeles…for now, our focus is Rudy’s third attempt at the sleep study.  Please pray he’ll cooperate tomorrow night and the findings will be clear.  Our hope is that the sleep study results will show he is not dependent on his trach and therefore ready to wean off of it.  It seems to us that this is the case but there was some question last time as to whether or not Rudy was expelling enough carbon dioxide so we hope these intricate measurements are able to be captured and we’re left with no questions.  We’ll keep you posted and we thank you for your continued prayers for these tedious details.  Continuing on in this journey…one day at a time.