Archive for January, 2014

First Day of School – Take 2

January 28, 2014
Rudy's first day at La Patera  Elementary School  1-27-2014

Rudy’s first day at La Patera Elementary School 1-27-2014

Rolf’s last post about “managing our expectations and emotions” accurately describes the emotional valleys we encounter as we continue to live “in limbo” alongside Rudy.  Although we struggle with Rudy’s uncertain future, there is comfort in watching Rudy enjoy life to the fullest…I’m not sure it’s accurate to say that he is “blissfully unaware” of the battle he is in but he certainly doesn’t know any different and there is very little that steals his joy and smile.

Today was another perfect example of how heartache and deep, deep joy coexist in this crazy journey.  After months of discussion and planning, Rudy had his first day of Kindergarten at our neighborhood school today!  His modified schedule includes Mondays at La Patera and Tuesdays through Fridays at his current special ed school where he will continue to work on specific goals and receive special services.  Knowing that this year was going to be a bit of a transitional year for Rudy as he moved from a county program to our local school district a full year before his formal Kindergarten placement, I requested that he have an opportunity to attend our neighborhood school where he and Olivia could have a shared educational experience and where he would have a chance to interact with neighborhood friends (i.e. gal pal Stella).  Rudy will likely go to another Goleta school next year with an established special ed Kindergarten program and because Olivia will be headed off to Junior High next year, this is their only chance to go to school “together”.  Needless to say, we’re all so thrilled that the district and LP community were willing to work with us, see the mutual benefits for all involved and welcome Rudy into the classroom mid-year!!!

Everything about today was precious.  The day started when we pulled up to the school and Rudy said “Bye, I-ya (Olivia), see ‘ya” to which Olivia replied “Rudy, you’re coming too!”.  The minute we got out of the car and headed to the Kindergarten playground, Rudy’s excitement was undeniable…he was quickly surrounded by classmates who were told last week that he would be coming and he bonded with some of the kids over basketball.  We are overjoyed that Rudy’s school nurse, Nurse Sara, is able to accompany him at both schools…her support and the continuity of care that she can provide no matter their location is crucial and such an amazing gift.

In response to a letter (see below) the school sent home about Rudy last week, one of the little boys in Rudy’s class walked right up to me and said with a proud smile “My mom told me to be nice to Rudy.” (Ha, ha – Classic)  The kids circled up and when Rudy’s new teacher introduced him to the class, Rudy waved enthusiastically as if on cue.  To see him so warmly welcomed by the students and staff at La Patera was, well, magical…

Time to meet new friends!

Time to meet new friends!

Rudy was happy and excited the minute we walked on the Kindergarten play yard!

Rudy was happy and excited the minute we walked on the Kindergarten playground!

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Rudy and big sis together at school!

Rudy and big sis together at school!

Rudy waving a friendly "hello" to his new friends...

Rudy waving a friendly “hello” to his new teacher and new friends…

…and sharing a BIG smile with gal pal Stella!!

…and sharing a BIG smile with ol’ friend Stella!!

Rudy wasn't too interested in coming home when it was time for pick up!

Rudy wasn’t too interested in coming home when it was time for pick up! 😉

When Rolf and I arrived to pick Rudy up, big sis was helping in his classroom during her lunch break and Rudy was playing on the computer with friends.  We had a hard time tearing him away and it all clearly made a big impression because the first thing Rudy said to us was “Dad, Mom!  Neat game!!”.  Nurse Sara and Mrs. Farrington confirmed that Rudy had a great first day filled with smooth transitions between activities, positive interactions with the other children and a happy demeanor…a happy heart!  As a result, our breaking hearts are happy too…a curious combination.

a note from one of Rudy's classmates…precious!

a note from one of Rudy’s classmates…precious!

...a letter introducing Rudy to his class.

…a letter introducing Rudy to his class.

Managing Expectations and Emotions

January 18, 2014

We had our appointment with the transplant team at UCLA Thursday.  It’s hard not to come away feeling spent afterwards.  In one respect, these are like the regular check-ins we do with our doctors here in Santa Barbara but they always include a battle to balance expectations and emotions.  Instead of a quick office visit on a pretty tree-lined street, we have to navigate parking and the environment of a busy research hospital in a major city.  As much as you try to keep things in check, there’s something about the experience that builds your expectations–maybe all these smart people in these buildings filled with nifty equipment will be able to tell us something definitive about Rudy’s prognosis.  Maybe it might even be something really good.

These treks to the Cardiomyopathy Clinic will likely become a routine check-in every six-months allowing the transplant team to directly monitor Rudy’s condition.  We started the day with an extensive echo.  While the machine in SB is perfectly fine for keeping track of things, the one at UCLA is state of the art and that–along with our own improved ability to decipher things–made for a pretty emotional moment as clear, sharp images of Rudy’s heart moved across the screen.  I was making occasional glances up to the screen while trying to keep Rudy still and kept seeing what looked like a small crab claw opening and closing.  I finally just had to ask the tech to back up and focus on it–he confirmed that I was seeing what I thought I was seeing:  the left side of Rudy’s heart–a shrunken little chamber about 1/10th the size of the right one that was chugging away on center screen.  On top was the tiny mitral valve snapping open and shut in tempo with the larger tricuspid valve.

But doing nothing.

It never has.

It never will.

And yet it’s been there flapping open and shut like it’s accomplishing something.  For some reason it just gave me chills.  It felt like we were suddenly seeing our enemy in plain view.  So much unexpected anguish entered our lives because of that little useless snapping lump.

ImageAfter the echo, we had to wait for our appointment with the cardiologist.  It’s hard to sit in the waiting area of the Pediatric Heart Transplant Suite without a pretty hard dose of reality hitting you in the face.  We were quickly back to life in the ICU–lots of beautiful, heroic and blue sick children–some just show up in their pajamas because that’s all they ever wear or they likely know they’re going to be disrobing a lot anyway.  Generally weary parents doing whatever they can do to cope with the intensity:  putting on bold faces, trying to distract kids with humor or electronics.  Frustration breaks through every so often but there are just as many looks of quiet compassion and empathy from one parent to another.  It’s overwhelming to think of how many families are going through such gut-wrenching stuff.  You can’t help but think “Dear God, how will all these kids get a heart?”.

It actually makes you happy to have the kid who’s getting antsy over having to sit in his chair.  We’ve learned if we recline Rudy’s wheelchair far enough he can stand behind it and use it as a walker, so Rudy proudly marched up and down the hallway chirping “Hi!” and “See ya!” to most anyone who would listen (and just about everybody else that didn’t).  At one point Trish took to singing with him to keep him entertained and, as they finished a quiet rendition of “You are My Sunshine”, I looked up and noticed the receptionist was wiping tears from her eyes. This place is just so sacredly intense.

We had a long session with Dr. Alejos during which Rudy tore the paper covering the exam table into confetti and threw it around the room.  We apologized and tried to rein him in, but Doc waved it off saying, “This is great!  I get more concerned when I see the kids lying there not doing anything.”  Even so, it really is a challenge to be having a conversation about heart failure, quality of life and transplant outcomes while one person in the room is carrying on like he’s in Times Square at New Year’s.

Dr. Alejos is in regular communication with Dr. Harake and didn’t see any immediate need to address anything in Rudy’s case.  Rudy’s stability allows them to track things long-term because heart function and size can vary a little from echo to echo, so they really want to watch for progression over time.  Like all the doctors at UCLA, he is very patient and willing to answer questions repeatedly.  That’s good because these appointments are probably turning into periodic reality checks for us.  Life in Santa Barbara with our kids and family thriving can sometimes be so idyllic, we forget about the stuff Rudy is facing.  A heart transplant is a big operation and it does not provide a long-term solution.  It only extends life for a finite amount of time so the longer it can be put off the better.

Just plain heavy.  Simply being back at UCLA revives all kinds of memories from the seven months we spent there–much of it wondering if Rudy would ever get to go home.  We are so grateful for caring doctors and incredible expertise, but as we walked out of the building to debrief and decompress, I reminded Trish of our substitute acronym for HLHS…”Half a Little Heart SUCKS!”  It probably won’t get printed on any t-shirts, but you can’t go through something like this without occasionally just calling things for what they are.  So unreal that anyone would need to wrestle with things like this.  So sad that any kid would have to deal with this.

After all of this, it was so restorative to see Dr. Rick who asked us to page him when we were done for a visit down on the patio.  Sitting there on an obscenely beautiful day (clearly far removed from the polar vortex) we had a chance to catch up on life and see Dr. Brian and Dr. Dan as they were walking by.  Rudy quickly grew tired of grown-up talk and decided to go exploring–which almost always means getting as far away from us as possible.  Dr. Dan, perhaps having a smaller permissable child roaming perimeter than we do, finally had to go give chase.

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Where ya goin’, Rudy?

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How about coming back this way to Mom and Dad?

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[Rudy assumes “invisibility posture”; his way of stubbornly ignoring instructions]

As persistent as he might be in the cath lab, Dr. Dan finally came back without Rudy.

It was a long and draining day.  As therapeutic as the drive home along the ocean can be, nothing beats being back in the friendly confines of home.  Rudy was pretty pooped, but his sibs still made sure he didn’t miss out on some evening roughhousing.

Boo Hoo! We Got The Flu :(

January 9, 2014

After getting the kids settled back in school,  our household got hit with the flu…Livy came down with it on Tuesday evening  and Max & Rudy got it practically simultaneously early this morning.  Thankfully it ran it’s course through Olivia in less than 24 hours so I hope it’s the same for the boys.  ‘Praying it stops there and doesn’t bring the rest of us down.  Grandma Jo headed home yesterday and made it safety back to KS…dodging the flu bullet!  Needless to say, we’ll be staying close to home the next couple of days.  😦

Bye, bye Grandma Jo

Bye, bye Grandma Jo

Welcome 2014

January 6, 2014
12am on January 1, 2014

12am on January 1, 2014

Well, as much as I hate to see Christmas vacation come to an end, we are a week into 2014 and the kids are back in school so I guess it’s time to move on.  Welcome 2014!  This time last year we were preparing to go on Rudy’s Wish Trip to Give Kids The World…it’s hard to imagine what 2014 will bring that could top the fun we shared in 2013 but my prayer is as it always is at the start of a big, unknown new year…that we’ll take it one day at a time and see God in it all…the good and the bad!  🙂  We trust that this will be a year of great gain for Rudy…that his health concerns will continue to take a backseat to his developmental progress and that he’ll find great joy in his family and his growing community of friends.  He sure enjoyed the extra time he got to spend with his big sibs and Grandma Jo over the break.  The harsh reality of the big sibs being back in the school/homework routine, Grandma Jo going back home to KS on Wednesday and Nurse Dodi’s retirement is going to hit hard later in the week when he’s left with only good ol’ (boring) mom to play with during the day.  Poor guy…how long ’til Spring Break?

Well, we have this week to get organized and the house back in order before Girl Scout cookies arrive (YEP, it’s that time of year again) and our meeting with Dr. Alejos at the Cardiomyopathy clinic down at UCLA on January 16th.  I have lots of thoughts and questions swirling around in my head that I’d like to rein in a bit before our appointment but it’s getting harder and harder to carve out time to process things…we kind of just take things as they come these days…so we’ll see.

2014 has started out pretty great with some sweet sibling moments…’praying it continues on this positive trajectory in the months ahead!

Rudy was happy at midnight...

Rudy, Max & Olivia were happy at the stroke of midnight on New Year’s…

Wilson was not...

Wilson was not…

Simple vacation fun…Max trying his hand at Rainbow Looming!...

Simple vacation fun…Max trying his hand at Rainbow Looming!…

…Movie Night...

…movie night…

…video games!

…video games!

…a quiet moment with G'ma Jo.

…a quiet moment with G’ma Jo.