Splish, Splash, Rudy’s Takin’ a Bath!

The docs told us several times that, due to what Rudy had to endure at the start of his life, he would have his own unique developmental time line.  That’s certainly been the case.  The milestones come slowly, but they do come.

About a month ago, we realized that sponge baths were getting kind of difficult.  Due to his compromised health and this trache and G-tube being potential sites of infection, regular hygiene is a big deal (having a Mom who’s borderline OCD works in his favor here).  We don’t have the biggest of kitchen counters to begin with and Rudy has become very good at grabbing for things and knocking them down.  So bath time became a sort of juggling routine of trying to control his squirming, catching items (sponges, medical supplies, dish soap, the phone, the fruit bowl) before he knocked them over the edge, and then–oh, yeah–actually getting him clean.

So, now that he can sit up pretty well on his own, we finally decided to see if we could skip the sponge bath and put him in the sink.  While we captured the first couple of times on video, we thought it would be cruel to post that as he HATED it.  We suspect there was something about the new sensation that just wasn’t suiting him.  But that’s where having a skilled in-home therapist at home sure is handy.  Olivia loves taking care of her little brother and he clearly loves her attention.  Check it out:

We’ve got a big bathing boy, who even likes to splash around in the tub!  Astute Rudy fans might recall that this isn’t Rudy’s first foray into the bath…but look how far he’s come!    Stay tuned…if he keeps growing this way we’ll have to transition him to the actual bathtub before too long!

OK to Drive!

Thanks everyone for your prayers.  The antibiotics seem to have done their magic and, with the demise of ED and EFD, Rudy’s diapers are holding containment and the smells emanating from there are the usual kind.

We laid lower than usual for the past couple weeks, but as Rudy got his spunk back, we ventured out to have some fun.  Down at Ventura Harbor on Saturday, Rudy was intrigued enough by the car ride to tolerate the din of the arcade:

Back home on Sunday, he felt up for taking his own set of wheels out for a spin.  Check out that leg strength–Fred Flintstone’s got nothing on him.  Not to mention that back and neck strength!

Cars are cool!  Especially red convertibles.  The same cannot be said for red trains:

Get me back in my car!!!

After all, you can’t sit behind the wheel of a train and hoot and holler.  No girls can hear you…you need a convertible for that!

Our Apologies to Allied Waste Management!

Thank you for all of the prayers and inquiries in the wake of our ER trip this weekend.  Rudy is doing well and even has some bursts of energy and happy moods, but we’re generally staying close to home and going at a slow pace while the antibiotics do their work.  Fortunately, the week has had a good dose of fun thanks to Oma and Opa’s visit and big sister’s birthday.

Even with our transparency on this blog,  there are still some of the more private struggles that Trish and I have had to deal with that are embarrassing to share about.  This week, we have been preoccupied with ED.  One would think this would be an individual matter where the symptomatic individual can deal with the issue privately.  But that’s not the way we approach things–for us, ED is a family issue.  We all feel the burden of one person’s ED.  As much as one might try to keep this private and personal, our whole family and even some of our friends have had to wrestle with ED and it’s implications.  ED is a family condition and it’s pervaded our life this week.

That’s right, our family has been afflicted with Explosive Diarrhea (what did you think I was talking about?).  That was the first symptom in the sequence of events that led us to the ER.  Even if the first couple of times were just gross, the clarion report was impressive enough (not muffled in the least by a diaper) that instances of ED were greeted with delight by Rudy’s older siblings.  Once it became evident that these episodes far exceeded the containment capabilities of modern diaper technology, the novelty wore off and a steady stream of laundry cycles began.

After returning from the ER, we thought that we might see changes for the better after the first few doses of medication took effect.  Our observations were quite the opposite, such that we placed some follow up calls.  These revealed that antibiotics not only exacerbate ED but actually add some new wrinkles as far as consistency.  So now our struggle is with EFD.  Explosive.  Foaming.  Diarrhea.  Picture the worst, then welcome to our world.  We only hope the antibiotics run their course soon…for Rudy’s sake and ours!    The good news is we have plenty of crib bedding, detergent and diapers in good supply.  The bad news is the garbage men just may plain refuse to pick up our cans this week.  So sorry Allied Waste Management!

Perhaps it’s too late to do anything about the visual images this post has put into the reader’s mind thusfar, but let me attempt to do so by documenting some of the happy distractions that carried us through.  We had a fun visit with Oma and Opa (and much appreciated the help in moving sets of bedding through the laundry).  And today Rudy’s big sister turns eight, so we’ve been celebrating that most of the week.

Check out Rudy's cutting edge hairstyle!
Fun with Oma and Opa

Rudy having fun with our big birthday girl!


Livy's birthday dinner. Why no Rudy? A spectacular EFD episode sent he and Daddy sprinting to the car.

Something to squawk about!

This is way overdue, but long-time readers might remember that Rudy was an award-winning photo subject.  In addition to what I’m sure was an obscene amount of cash and world-wide acclaim, Greg Lawler won a cool six-pack of Root Beer with his shot on the label.  We’re so thankful to Gabe and Glen at Specialty Color Services for sending us one of our own.  We’re still debating over what special  occasion we’ll crack them open on!  Thanks, Greg, Gabe and Glen!

A sweet award! (Better than an Oscar)

Rudy thinks it’s pretty neat to have his face on a bottle of soda.  He also thinks it’s pretty fun to hang out on the couch with his big brother and take his speaking valve for a spin:

Summer’s Finale

And here we are…the final days of summer vacation!  The big kids are actually being more mature about it than I am…I’m not ready for them to go back to school and I’m not ready for the structure and commitments of the school year but, alas, it’s time! We spent the earlier part of this week scurrying around town to finish up our school shopping and tomorrow we go to both schools to get school schedules and class assignments – big day.  We did, however,  manage to squeeze in a bit of last minute summer fun…

Paddle Boarding Trio

One reason the start of the school year is so unsettling for me is not knowing when Rudy’s next heart surgery will be…surely it will happen this fall (?) but that’s what we thought this time last year!  I definitely feel it’s much easier emotionally to “live in limbo” during the summer months when there isn’t much demand on our time.  There is a greater level of stress as we wait during the school year and so we are eager to get the Glenn behind us for many reasons!  Rolf and I have been heavy-hearted the past couple of weeks and not because of a specific “episode” with Rudy but simply because the gravity of his situation in general sometimes surfaces and feeds our fear.  We may have made great strides in “adjusting” to our new normal this past year but I guess we’re realizing is doesn’t really get any easier emotionally.  🙂

Thankfully, Rudy remains stable and is even making some impressive developmental progress.  His monthly heart echo and exam by Dr. Harake late last week showed no change in his heart condition which is a good thing.  Weaning Rudy from the trach before the heart cath (scheduled for Oct. 21) is off the table and won’t be something we pursue until AFTER the Glenn…as much as we’d love to see Rudy past the need for the trach, we feel the decision to wait is the best option for him at this point.  Developmentally, Rudy is getting stronger at sitting up…he can’t get himself into the sitting position but once you get him set up, he’ll sit for longer periods of time and he even batted at some bubbles during therapy last week while keeping his balance – so fun!  Rudy was blessed with a fun hand-me-down last night…a little red coupe:

Rudy's Red Coupe!

We were excited at first because it’s the perfect size for him and a great way for him to sit and practice holding himself up.  We put him in it this morning and all of a sudden he discovered mobility!!!!  His ability to push himself back with his feet is a really big deal as he has not tolerated bearing ANY weight on his feet at all up until now.  His therapists have said all along that once he experiences mobility, he’ll be pretty motivated by the feeling of independence so we hope this is the dawn of a new season of growth and development for Rudy. 

Check him out:

‘Just wanted to give a “shout out” to the ladies of Tauy Baptist Church in Kansas and University Village in Thousand Oaks, CA for the shipments of Rudy Rolls!!!  So far this summer I’ve made 3 deliveries of Rudy Rolls (enough for 45 patients!) to the CTICU at UCLA and they have been enthusiastically distributed by the nurses in that unit – thanks to all who have participated…feel free to keep them coming!  🙂 

A big thanks to the ladies at University Village in Thousand Oaks, CA AND Tauy Baptist Church in KS!!

Thanks everyone!!!  We appreciate you…

Happy 21 Months!

July 1st…not only the start of yet another month but also Rudy’s 21st mensiversary!  It was a somewhat uneventful day  (although we did get to spend a good portion of it at the Rescue Mission which is a fun place for us to be). 

It just so happened that Rolf finished Rudy’s custom crib the night before so we got it all set up in time to unveil it on this milestone day…replacing the port-a-crib bassinet Rudy should have been out of 16 pounds ago!!!!! 

A little known fact about Rolf is his ability to make beautiful furniture…

i.e. My cedar-lined chest: circa 1992

 

i.e. The Kids' Rocking Moose: circa 1997

 

…it doesn’t happen very often as it is pretty time consuming but it sure is a blessing when it does happen. 

We just couldn’t find a suitable “day bed” for Rudy that met all of his needs and also ours as we needed it to fit a very specific space in our living room and be a specific height to save our backs (our little chunk is getting pretty heavy!) so Rolf was inspired to get back into the shop and unleash his creative energy…

Rolf's custom crib for Rudy!

 

Rolf surprised me with an added shelf for Rudy's equipment AND a little saline holder up top...see it?

 

If we prop him up, Rudy can hold on and sit up a bit...he has so much more room to sleep and play!

 

July 1, 2010 - 21 months old

He’s pretty excited about it…Happy 21 months little man!!!

‘Just Another Day Of Therapy

Rudy continues to have therapy at home twice a week and is pretty agreeable to all the activities Gwen prepares for him.  Of course, she has alot of extra hands to help out…you’d think the big kids would scatter to go watch t.v. in the other room or play outside but they genuinely want to participate in Rudy’s therapy and Gwen is sweet to encourage it as you can see in the video below:

Rudy is still getting used to the speaking valve but definitely becoming more confident…

We head down to UCLA tomorrow for an appointment with Dr. Pornchai Tirakitsoontorn (Pulmonologist).  We haven’t seen him since April so I’m eager to touch base with him and hear how he thinks Rudy is doing.  We’ll also make a quick stop in the CTICU to drop off our first batch of “Rudy Rolls“.  It will be a long day in L.A. but I’m anticipating it will be an encouraging visit.  We’ll update later in the week…

Impulse Buy

Our summer offically started last Thursday at 11:40am when I made the rounds to the two schools to pick up Wilson, Max and Olivia!  What a great feeling it is to wake up with no demands on our time and no schedule to keep but the one we make for ourselves.  Of course summer brings it’s own set of challenges finding that perfect blend of  “structure” and “fun” as well as that perfect mix of “patience” and “grace” with everyone home…all day, every day.   No complaints here, though!!!  (At least not on Day 3 of summer vacation!)  🙂

All three  kids ended the school year with affirming words from their teachers and good marks on their report cards…another year under their belts and we’re so grateful for the supportive teachers with whom God surrounded them this year and the success they achieved with very little help from me and Rolf!! 

The kids and I ran a couple of errands after I picked them up on Thursday and we stopped for the traditional “end of the school year” treat…this year it was a Lego for Max, and new books for Wilson and Olivia.  While we shopped, I stumbled on the cutest Fisher Price riding toy I have ever seen…a race car with all the bells and whistles and engine sounds one could hope for…I HAD to buy it for Rudy.  It was a total impulse buy (no special occasion to justify the purchase, too expensive,  no room for another big toy in our house, etc, etc, etc) but I couldn’t resist.  Rudy’s not quite ready for it but, oh, is he ever cute:

But this alone made the purchase TOTALLY worth it…check out the smile on Rudy’s face:

Hopefully this is just a small glimpse of the fun we’ll have this summer.  Now, I don’t mean to completely monopolize your time with boring videos of my family but I just had to include this little singing session video.  Watch carefully!  Rudy clearly knows what’s going on and his mind is engaged in the happy business of “singing”!  You can bet we’ll be doing alot more singing this summer too…Ha Ha

Cool by the pool!

Perfectly on cue, some incredible summer weather came for Memorial Day weekend.  The cool weather hasn’t stopped the kids from swimming previously, but today was one of those perfect days to have a pool.

Rudy sat on the deck and was having fun watching Max.  It wasn’t too long before he got splashed.  A bit startling at first, but then it was kinda funny!

That gave me and Max an idea, so we rigged up the kayak…

Pretty cool to have a big brother like Max.

Rudy can’t wait to go back out again!

Happy Memorial Day, everyone!  More fun to come!

Figured It Out!!!

Okay, so I’ve been trying to figure out  how to get this slideshow I put together for Rudy’s dedication LAST JUNE on the blog and I finally figured it out this week!!!!  It’s a collection of blog pics that consolidates Rudy’s hospital stay so, obviously, it’s a bit outdated now but it’s a sweet collection set to the main title song from the movie “Rudy”.  I’m posting it mainly to have record of it on the blog but, if you have a minute, you might enjoy it.

My techie breakthrough occured while compiling a bunch of old Rudy pics for a slideshow presentation to be used next week at the American Heart Association Gala here in Santa Barbara.  At Dr. Harake’s recommendation, the local AHA office asked us to attend and share a bit of Rudy’s story for this annual fundraiser.  I’m including the information below in case you’re in the area and interested in attending the event at the Polo and Racquet Club.  It should prove to be an inspiring evening.

The Twelfth Annual American Heart Association

Santa Barbara Heart Ball

-a sunset celebration with heart

Saturday, May 22, 2010

5:30pm – 10:30pm

Santa Barbara Polo & Racquet Club

3300 Via Real, Carpinteria CA

For ticket information, contact Stacie Irish, Business Development Director

805-963-8862

Stacie.Irish@heart.org