Special friends who share the journey

Rudy’s second day of school went well.  He enjoyed several of the activities at school so much that he threw a couple little tantrums when teacher Christy started to wrap them up and move on to the next.  That’s new behavior for our little sweet and happy boy.

He really liked painting and we are excited for next week when he’ll bring home his first masterpiece!

Shhhh....prodigy at work!

We’ve been on a pretty happy run of late–from the good news at the heart cath, to Rudy’s birthday, to the Heart Walk, and now the first week of school.  Part of the fun is that we get to share this journey with so many people near and far thanks to this blog.  Some of the most special people we get to share it with are families on similar journeys who are able to see the beauty and cause for celebration even in the midst of challenging circumstances.  So we were especially tickled by a super-fun internet game of Udderball with Moriah (glad you’re back home!) and, as promised, a special birthday present from Gwendolyn.  We aren’t planning any trips back to UCLA anytime soon, but when we do Rudy will be ready to weigh in on group rounds.

"Dr. Rudy, paging Dr. Rudy, we need you in the CTICU - stat!"

Thanks so much to these dear people and everyone else who continues to ride with us through all the twists and turns of the Rudy-coaster.

It Takes a Bit More Than a Village…

Rudy’s Birthday week includes dueling highlights.  You already know about the actual birthday happenings and you’ve probably also caught wind of the Heart Walk celebration coming up this weekend.  But wait, there’s more—tomorrow (Tuesday), Rudy will go to SCHOOL!

Life with HLHS has taught us to embrace the moment.  There are so many unknowns on this journey that we’ve learned to live life with less of a future orientation than normal. That means that milestones like this can sneak up on us.

I didn’t think we needed to be reminded of how big a deal Rudy starting school is, but we got a vivid enough reminder of this last week as his IEP meeting. (In case your wondering, “IEP” stands for “Individualized Education Plan” and it’s what therapists, educators and medical professionals set up for special needs clients—each one of whom is unique.)  Until now, the IFSP (Individualized Family Service Plan) sessions we’ve had have taken place around our dining table and all of the faces were the familiar and dedicated team from Tri-Counties Regional Center and NurseCore.

While Trish was more aware of what was coming, I had missed the detail that this IEP meeting was going to be at the Goleta School District headquarters, but shortly after arriving it was clear that a group this size wouldn’t have fit around our table.  So it may take a village to raise a child, but it takes a coordinated multi-jurisdictional agency effort to educate Rudy!  I think I counted 18 people—all there to discuss Rudy and what services he needed.

Let’s see if I can remember all of the agencies:

  • Tri-Counties Regional Center (gave their final report as Rudy graduated their program by turning three)
  • California Children’s Services (Rudy’s current PT/OT provider)
  • Goleta Union School District (our home district came and assessed Rudy)
  • Santa Barbara School District (where GUSD referred Rudy as he is non-ambulatory)
  • SB County Education Office (who oversees inter-district stuff and provides Special Ed support)

Over the two hours we were together:  therapists and teachers shared their assessments and articulated goals; nurses clarified medical issues so insure safety and support in the classroom and on the bus;  and specific equipment and schedule needs were identified so that solutions can be devised.  Not every question was answered (and we probably didn’t know all the right ones to ask), but so much of the game here is to try things and see what can be worked out.

The reassuring thing is that so many very competent and dedicated people have their attention focused on Rudy.  I’m not sure I’ll ever get used to that awkwardgratefulhumble feeling that comes when I see so many people going to such lengths for my child.  To the nurses that never slumber, the skilled doctors who keep searching for ways to help him, and the friends that pray and continue to help in countless ways I now add this new team of dedicated people who are investing so deeply in Rudy’s development.

Stay tuned for the “first day of school” post coming tomorrow…

Rudy graduates from Early Start with honors (!) and says goodbye to OTR/L Kris and Child Development Specialist Gwen.


For our records, here are the results of Rudy’s final assessment at 36 months from Regional Center:

Fine Motor and Perceptual Skills –  Approximate Age Equivalent (AAE): 12 months

Cognitive – AAE: 16 months

Receptive Language – AAE:  12 months

Expressive Language – AAE:  12 months

Social/Emotional – AAE:  20 months


Feeding – AAE: 6 months

Toileting – AAE:  15 months

Dressing/Hygiene – AAE:  15 months

Gross Motor – AAE:  6 months




Rudy goes to space!!

Greg Lawler strikes again!  While the rest of us watch TV he spends his more conventional evenings with his photography but sometimes he likes to spice things up a bit with some beekeeping, chicken-farming or metal-smithing.  His latest pursuit was to try and take high-altitude pictures of the earth.  Apparently no ladders of sufficient height could be found so he sent a balloon to 95,000ft (“near space”–3x higher than planes fly!) and took all kinds of pictures and video.

In addition to the images, Greg and his partner Geoffrey conducted a ground-breaking experiment on what happens to a marshmallow and a Twinkie at high altitude.  They thought it would be fun to take Rudy along for the ride, so we now have three very special Rudy bracelets that have been to space.  You can watch a really beautiful video if you click here or follow the below.  Who knew watching some silicone bracelets sitting between a marshmallow and a Twinkie could get one misty-eyed?

Fly, Rudy, Fly!


Lots of smiles this weekend

But none more precious than these…

Not sure we’ll ever forget this weekend and all of the love and affirmation. Thanks to Jim, John and all the Uppies who had a hand in making the award weekend possible.  And many thanks to the crew here in SB (Lisa, Jannele, Sherry, Tera, Evelyn, Gina, Dodi, Lauren, Greg) who held things down seamlessly on the home front and managed to pull off the big surprise.

Rudy is very proud of his mama and approves of the trophy!

Yoga with Rudy…

We don’t know where he finds the time, but Rudy seems to have taken up yoga.  We believe some of this comes out of his practice of emptying out his crib several times a day.  There just comes a point when we tire of the game of putting everything back in there.  So I guess he needs to do something to occupy himself.  Maybe he’ll realize someday that throwing your pacifier away leaves you with decidedly fewer alternatives, but in the meantime we give you the Sucking Foot Pose.

Valuable Rudy swag will be awarded to anyone who sends a video proving their own mastery of the Sucking Foot.


Never too busy to dance!

So much livin’ going on here we haven’t had time to sit down and post.  We’ll update you soon on all that’s been going on with the countdown to the end of school, birthday celebrations and a boy with junky lungs.  But even in the midst of this, the impulse to dance is hard to suppress (especially when Miley beckons…).

Many might ask, “why?”

We ask, “why not?”

We LOVE Nurses!!!

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.

She's been coming since Rudy was just a little squirt!

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.

Waking up with Nurse Evelyn
Sunrise and smiles with Nurse Gina!

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!

Mom’s imprints

Her sense of organization was clearly handed down to this kid…

Seriously, his desk looks like this all the time...we didn't need to tidy up for the picture!

This one exhibits hereditary crafting skills…

Max's chore was to flatten boxes for recycling...he got there eventually

This one inherited a love for the stage…

Livy after this weekend's school show

This one has her uncanny ability to light up a room with a smile…

I could write a lot about Trish and the mother that she is, but it wouldn’t add much to what’s so evident to anyone who’s seen her in action or has even passively been following Rudy’s Beat.  Her devotion and love is shown daily in her concern for all of our kids and especially in the way she assumes the added burden of managing the care of a medically fragile child.  We are so blessed through you, Trish, and we honor you today.  Happy Mother’s Day!

And probably no better way to show it than a dose of Rudy-love!  Roll the video:

Quick Medical Update:  Things have calmed down here after the seizure episode, but now Rudy caught himself a cold and some conjunctivitis.  He’s not really thrilled about the eyedrops and is a little less perky that usual, but still the pleasant trooper.  Expecting all of this to get cleared up before the EEG Monday and then the sleep study on Tuesday.

Happy Mother’s Day to all you moms!

Two Years…

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).

Rudy reliving the big day

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.

I much prefer life at home!

Yo! Adrian!!!

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…

Boo-boo? This ain't a boo-boo!!!