It’s Nurse Appreciation Week and if there’s one thing we’ve become very grateful for it’s good nurses.  Of course, we’re still moved at the incredible team at UCLA that fought alongside Rudy during those first seven months (and we never get tired of going here and watching the second slideshow to be reminded of so many of them).

With the amount of coordination we need to do between about a dozen doctors, insurance, medical suppliers, labs and the like, it’s amazing how much things can be furthered by a good nurse.  The kind that love Rudy, know the complexity of his condition, are able to stay organized and doggedly persistent when the necessary approvals don’t seem to be forthcoming in the time we need them.  We’re so grateful for Elaine at Dr. Pornchai’s office (who remains friendly and upbeat despite the number of times she has had to communicate with crApria to track down various shipments of medical equipment) and Melody at Dr. Abbott’s (who, as our primary care provider, manages an incredible amount of documentation and is always quick to return our calls for all kinds of inquiries).

But we especially appreciate the home health nurses who come take care of Rudy in our home.

There’s Dodi, who brings her bubbly cheer two afternoons a week so Trish can have some “free” time.

Then there are the amazing angels who come two or three nights a week to keep an eye on Rudy all night while we sleep.  It still amazes me that there are people who come to our house at 11pm and tell us to go get some rest, but especially in the wake of all the upheaval these last two weeks, we’re extremely grateful that they do.

This group of ladies is a godsend to our family not just because of the practical care they give Rudy, but for the way they’ve become a part of our family.  So, in the spirit of Nurse Appreciation Week, we certainly do!

Thanks to these and so many more dedicated nurses who have given Rudy the life he has!

It’s hard to figure out what the most memorable day of Rudy’s journey has been for us.  We’ll never forget the adrenaline of his birthday (10/1) or the anxiety of his Norwood Day (10/6), but there’s nothing like the elation we felt on April 7, 2009 when we finally made it out of the hospital on a rainy un-spring-like day like today.  It’s hard to imagine that was two years ago, and sometimes it even gets difficult to recall the seven months he battled to get out of that hospital–but not enough that we start to take life with Rudy at home for granted.

We’ve already read through the posts from that week and watched the slideshow of that incredible day a few times and probably will a few more.  When we left the hospital, the team hoped that we would be able stay away for six weeks before needing to come back for the Glenn procedure.  Rudy showed his trademark disregard for anyone else’s timeline–we were back in two weeks (but not for the Glenn–we still haven’t had that).

Not much has turned out like we thought it would, which carries its share of heartbreak.  But there’s also much cause for rejoicing.  The delicate little kid with the stringy curls and battle scars who fought his way home is a far cry from the happy, robust and squirmy boy we have today.  His bewildered stare has turned into a smile for everyone he meets–there are times where he just seems to exude love and joy from every pore.  It’s been a journey of concern and anguish, but also richness and beauty like we never imagined; and we’ve drank deeply from that these last two years.

Well, I guess it was inevitable.  A moment of sheer joy suddenly went awry.  Rudy was delighted to have one of his older siblings giving him the ride of all rides on the school patio.  The more twists and turns, the more uncontrollable the giggles.  It got even better when the one pushing got on a ripstick and could spin around even faster.  Part of the thrill lies in the flirting with danger and who knew that a seemingly small irregularity in the sidewalk would be such a significant threat.  It was suddenly discovered that any language that would describe Rudy’ nifty adaptive medical stroller as “untippable” is better interpreted as a marketing slogan rather than any sort of guarantee.

It was hard to know who needed more comforting–Rudy with the emerging bumps and bruises on his head or a very scared sibling.  But considering the history of periodic childhood ER trips for stitches in our family, tumbles are to be expected.  That not withstanding, it seemed like a teachable moment to be proactive and lay down a few guidelines to make sure Rudy is not included in some of the other sibling pastimes:  We will be more careful with fun stroller rides, but towing Rudy with a jump rope around the cul-du-sac on your bike is not a good idea.  Same goes for strapping him on a skateboard and pretending he’s a street-luger.  At no time should there be any attempts to get Rudy’s rig airborne–in fact, we’ll just keep him away from the bike ramps altogether–no ascending or descending.  Rudy is not allowed to swing from the avocado tree on an extension cord.  As many attempts that are made to see if you can double-jump your brother/sister clear over the safety netting on the trampoline, Rudy is not to be launched in this manner (though I agree–the little guy could get some serious air).  As much fun as dangerous jumps from the tree/wall/bench/roof can be, Rudy should only be close enough so that he can laugh when you face-plant.  Lecture over.  Agreement all around.

As acute as our concerns might be, this whole thing seems kind of lost on Rudy.  A good sweaty cry led into a  long nap and then he proudly made like Rocky and sported the shiners on his cheek and forehead.  I think he knows how much the babes dig a good bruise…