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…