Tiffany & Co.

Now, I know my thoughts on Thanksgiving Eve should center on all the wonderful things for which I’m thankful but, I admit, all I can think about is “retail”.  I just saw on television that Kohls is opening at 4am on Friday…4 AM!!!!  Wow!  I do love to shop but THAT is commitment.  I’m actually not a Black Friday shopper…I got up early several years ago to experience the festive hustle and bustle of the day and returned home 45 minutes later in tears after witnessing a mob of crazed shoppers literally trampling people in a race for some deal…seriously out of balance.

My enthusiasm for shopping has actually waned since moving to the Santa Barbara area.  As perfect as our community is on so many levels, shopping venues are  limited.  Believe it or not, we don’t have a WalMart (yes, it may not be politically correct, but I am an unashamed WalMart shopper) OR a Target!  (I KNOW!  I can hear the collective gasp from you all!!)  Oh, I suppose it’s for the best in the long run but there are those days when I long for that therapeutic trip to Home Goods      Well, it was one of those days shortly after we brought Rudy home from the hospital when I wandered into our Tiffany & Co. (to window shop…really!) thrilled to finally be “out and about” with Rudy in tow…I must have been pretty excited to show off our precious one as well because I gave sales manager Chelsea a pretty detailed account of Rudy’s journey when she gushed over how cute he was.  Ha   She was sweet to show interest in Rudy so I gave her the blog address and off I went.

Fast forward 5 months…”Mom, there’s a man in a suit holding a bag in the front yard and he wants to talk with you” I heard one of the kids yell from the back door.  “Rolf will take care of it” I said to myself thinking he was a door-to-door salesman of some kind but a couple of minutes later I hear, “Uh, Trish, there’s someone here to see you”.  Confused, I walked to the front door to find a man in a suit holding NOT JUST ANY BAG…a trademark blue TIFFANY bag.  I shot a “what are you up to?” look at Rolf but it was clear he had no clue what was going on.  Our mysterious visitor quickly identified himself as a Tiffany & Co. associate who stopped by on his way home from work to deliver a gift on behalf of the store!!!!  He’s WHO?…from WHERE?…and WHY?  I was so excited when (my new BFF) Paul handed me the bag you would have thought I was accepting a Publisher’s Clearing House check from Ed McMahon!  Paul added that he and his co-workers had been following RudysBeat and how pleased he was to meet Rudy in the flesh!  Equally touching was the note that accompanied the bag…”Dear Trish, You and Rudy left such a great impression on me and the entire staff here at Tiffany & Co.  Thank you for sharing your wonderful story with us and we hope that you and Rudy are in good spirits.  I know you are heading back to UCLA soon so I thought this “Courage” pendant would be appropriate for you to have on behalf of Tiffany & Co. La Cumbre Plaza….Sincerely, Chelsea V.”  (So sweet!)

Fast forward another month…We ran into Chelsea and her family at a local eatery when she told me to stop by the store because they had a gift waiting for Rudy…from the Tiffany & C0. LAS VEGAS BELLAGIO team!!!!   WHO?…from WHERE?  Again, I was blown away!!!  Sure enough, the Bellagio team had been following Rudy’s story as well and sent him a beautiful Tiffany football piggy bank with a card addressed to: Our Inspiration Little Rudy!   (Super sweet!)

Okay, so my little pre-Thanksgiving story isn’t O Henry’s Gift of the Magi but it is a fun and unexpected (and MUCH appreciated) reminder that Rudy is known, loved and shown extravagance not because he can give anything in return but simply for being himself AND that the kindness of  strangers goes a LONG way in bringing encouragement and lifting heavy hearts…

With Chelsea at Tiffany & Co.

 

I pulled out a stash of papers from Rudy’s files this week…an 11-page, single-spaced list of people to whom we’ve written thank you notes on Rudy’s behalf this past year…a list of kindnesses from both strangers and those close to our hearts…a pretty remarkable list of some remarkable people for which we are forever and deeply grateful.  Happy Thanksgiving dear Friends of Rudy!  May this holiday season be marked by abundant joy, extravagant love and “fear-eliminating” hope for us all!

While The Cat’s Away The Mice Will Play…Christmas Music!

Fun with Max

The kids and I have been flying solo this weekend with Rolf in Austin helping his parents prepare for their upcoming move.  I’ve taken full advantage of our big cat being gone by making more than one trip through a drive-thru and playing Christmas music throughout the whole house thanks to SIRIUS satellite radio.  Rolf has this odd conviction that Christmas music shouldn’t be played before Thanksgiving…and, unfortunately, the boys are following in his footsteps as they have accused me of “seasonal interference” all weekend!  I don’t care though…I’m still bigger than they are and I’m bullying my way to premature Christmas spirit.  Livy seems indifferent and Rudy smiles at me everytime I pass by singing and dancing along to the festive tunes. 

Thankfully we’ve had an uneventful weekend on the Rudy-front…no drama, no emergencies.  The big kids have kept busy with playdates, house chores, creative play and movies.  It has been a fun weekend but I know everyone is eager to see daddy when he returns tomorrow.

Here’s some of the fun on film…

Creative fun with Max and Livy

 

 All you Lego enthusiasts will be interested in hearing about the Bionicle sorting session we had this weekend…I asked the boys to sort through them all making sure all the pieces were in the right cannister complete with instruction booklets, etc and we were all amazed to find that their collection consists of OVER 60 Bionicles…insane!!!!!  They narrowed it down to the 5 or 6 nearest and dearest and the rest are showing up on CraigsList soon!  Ha Ha

The Big Bionicle Purge

“Just hear those sleigh bells ring-a-ling….”

Herd Immunity

We were glad to get the call from our family doctor that they had secured H1N1 vaccine for our family.  County public health has been releasing doses according to priority and, thanks to Rudy’s vulnerability, we made the cut.  Some in the field refer to this as the concept of “herd immunity”, so we rounded up all them critters and took ‘em down for the shots (moooooo!).

Whatever the reason, most kids are excited to miss a bit of school.

Thumbs up in the waiting room

Getting to play “squeeze the whole family into the exam room” makes for even more fun…

We always like to see Dr. Kirk

But with the wait, the reason behind our visit starts to sink in…

Wait a minute...why are we here?

Livy the Brave said she’d go first…

That lasted!

Max was second…

Toughing it out!

Then is was Wilson’s turn…

Wilson goes to his happy place...check out Mom's discolored hand!

Then Dad shows ‘em how it’s done!

That's right...they look up to me.

Trish’s was a little more exciting as her wardrobe choice meant she had to disrobe.

An end to the trauma brought cathartic release…

NNNNOOOOOOO!

 Rudy sat back smugly and took it all in…

"For once this dr. visit isn't for me!"

Holiday shouts to Johnny, please!

Several readers have commented about how Rudy’s Beat has made them aware of the HLHS community and has led them to follow and pray for other families who are waging their own battles.  As we’ve felt the isolation that’s a part of such a struggle, we draw comfort by being connected to others at various stages in the journey.  Knowing what others are going through can be encouraging, helpful and, yes, at times heartbreaking–but it’s much better than going through this alone.

A few months ago I re-connected with Kathy, a high school acquaintance in NJ 20+ years ago, as her teenage son is a seasoned HLHS warrior.  She just forwarded the following and I thought some of you might want to be involved.

Kathy writes:

The son of a friend of mine is losing his battle with Congenital Heart Defects. He is 19 and has HLHS just like Garrett. He is trying to hold on through the holidays, but his lungs have irreversible damage and it is straining his heart. His mother has put out a request to give Johnny a “shout out.”

MaryAnn has blazed this trail ahead of us and has always been a tremendous source of strength and advice for me as we have gone through our challenges with Garrett. She has had her hands full with Johnny’s health concerns for a long time but whenever I was having a challenging moment she has ALWAYS taken the time to write me a note acknowledging in her humorous way that, yes, the whole situation sucks but that I am a great mom doing the best I can in a very difficult situation. It means a lot.

Here is the email she sent out. Please take a moment to read this note and see if it is something you would like to do. Also, please feel free to repost this note to anyone you think might be able to.

———————————–from MaryAnn —————————-

So we were basking up here on the sunny shores of Lake Erie (in our down-filled parkas)and realized it was time to send the hard message to our family and friends.

Johnny’s gotten excellent medical care in the year we’ve been in Ohio, but the condition of his damaged lungs is something that couldn’t be reversed. Now he is in end-stage pulmonary failure, and the strain on his heart is showing.

However, as is his custom, he continues to defy logic. He survived a bout of flu last week, which prompted a discussion with his nurses and hospice people. We think Johnny is holding on for as much of the holidays as he can, so we’re shifting to an accelerated Christmas plan here.

If you’d like to be part of our shout-out to Johnny, here’s the thing:

I’ve set up an e-mail address for Johnny — johnny.aquilino@yahoo.com — and am asking everyone and anyone to send him holiday greetings by e-mail.

What I’d really love is for everyone to make a hand-lettered sign with a message on it for Johnny, then get a photo of themselves holding the sign and e-mail it to him. I’ll print them out and hang them all in his room — and I’d love to cover the walls, if you catch my meaning.

Anyhow, I’ll keep you posted

Love

MaryAnn

On The Back Burner…

With Rudy’s Glenn surgery date still unknown, I’ve decided to move forward with plans for the holidays.  Expecting that Rudy would have been to UCLA and back by now, we really have lived life this fall from one cardiologist appointment to the next…afraid to plan anything specific.  With Thanksgiving and Christmas literally just around the corner…I think it’s time to put the Glenn on the back burner of my mind for now and start making plans for some holiday fun.  Unfortunately, we are restricted from traveling to be with our families for Christmas but even planning for a quiet celebration at home involves a mental shift and some preparation.  The one benefit of being in the hospital during all the major holidays last year was that I got out of making a big turkey dinner!    So now I’m looking at the calendar wondering if I can pull off my annual holiday jewelry show in addition to the fun family traditions.  It is exciting to anticipate the holidays at home and think that Rudy will get to experience cookie decorating with his siblings, the twinkling lights on a BIG Christmas tree (nothing like the miniature tree he had in his CTICU room last year) and Christmas music playing throughout the house 24/7!!! 

Christmas prep started earlier this week at Olivia’s Brownie troop meeting as we started practicing Christmas carols to sing at a local retirement home in a few weeks.  Rudy got fussy waiting in his stroller but there wasn’t a good spot for him to stretch out anywhere so I ended up putting him in my guitar case while I led the girls in their singing…He liked the view from the case, I think.  He also got to show off his new (and FOURTH official) haircut!! 

Hanging out at Girl Scouts...

 

...in Mommy's guitar case!

 

 

Let the Holiday Whirlwind of Fun begin!!!

Another reason to love Dan Levi

I failed at masking my disbelief when, at our last appointment, Dr. Harake reported that Dr. Dan was coming to Santa Barbara to run in a road race.  Don’t get me wrong–he’s a gifted and personable cardiologist who invents cutting edge gadgets to help little kids in the fight–but the memory of watching him chomp on a bag of Doritos during 9am rounds didn’t exactly convey the image of “runner”.

As I suspected that Dr. Harake would not be able to resist passing on my initial shock, I was given pause when I received an e-mail from Dan late in the weekend.  Instead of taking umbrage, his devotion to Rudy was very evident.

Rolf

 

Thanks to you and Rudy, I had a dominant effort in the clydesdale (>200 lbs) division of the SB Half Marathon.  I finished in under 1:56 min with a staggering 8:50 min/mi pace.  Bilal told me that you were “surprised” to hear that I would attempt such a thing so I decided immediately to dedicate my race effort to Rudy.  When I almost suffered a myocardial infarction at mile 9 of 13, I just started saying to myself “Rudy never quits and Dr Dan never quits” – this made the last 4 miles possible!!  Tell Rudy Thanks!  I will send him my medal!!

 

Dr Dan

 

P.S.  see number 583 and please note that there were 1705 runners thus I was not last!  Also note efforts by Jenn Levi (244 overall) and Noel Reemtsen (much faster than me-#263)

 

 

Once again, I am moved by the individuals we’ve met on this journey and grateful for them.  Good show, Dr. Dan, and thanks for being one of Rudy’s heros!

 

We know why there wasn’t ever a “Mrs.” Vader

I don’t think we’ve ever gone a full week without posting before.  It’s not like there haven’t been milestones and progress to write about.  Sleep deprivation would be the culprit.  Rudy has had a little battle with a virus.  Fortunately, there were no fevers or runny nose–just  a lot of junk in his lungs that bring on coughing fits.  The medical mystery we’d love some insight into is why the fits always get worse at night.  He’s pretty much in the same position on his back or side all of the time, and is able to sleep peacefully for long stretches during the day without coughing or need for any suction.  That all changes just about the time we start hitting a good REM cycle.  We’ve had our share of nights this week of getting up every 30 minutes to suction him clean.  In between, the sleep we do get is kind of like that one would get if you had to share a room with Darth Vader.  That little trach makes a distinct array of snorts and wheezes…none of which would be classified as “soothing”.

But no matter how fitful the night was, the morning always brings kicking feet and happy wiggles (Rudy’s way of telling us he’s ready to face the day).  So Trish and I take inventory of any new bruises we inflicted on each other by using our elbows to indicate whose turn it is to get up and tend to Rudy, and we stumble on to face the day.

Enough with the stupor.  On to the milestones.  Rudy celebrated his 13 month birthday on November 1st.  He also crossed the 20lb barrier by just a few ounces (time to change the car seat!).   Wilson came home with a stellar report card from his first quarter at Junior High.  Max and the mightly Chargers finished out their football season with a respectable showing in the playoffs.  Trish and I celebrated our 17th anniversary on November 7th.  I know many of you are wondering how I could ever surpass the way I spoiled my wife last year, but thanks to our good friends at Tiffany (watch for an upcoming post) I think I did OK.

We’ll be catching you up with some of the more unique happenings our life in the days ahead, but for now we’ll stick to a medical update.  We had an appointment with Dr. Harake and the word is…we’re still waiting.  We really thought that we’d be coming out of this with a date in hand for our return to UCLA, but that isn’t the case.  Treatment of HLHS kids is a series of judgment calls and we’re once again seeing that Rudy has his own unique approach and timeline.  Two of the key indicators of when it’s time to do the Glenn are 1) when his 02 sats drop (indicating that he’s outgrowing his shunt) and 2) when his right ventricle looks strained.  Rudy’s sats haven’t dropped (in fact they seem to be going up–a hopeful sign of improved lungs) and the ventricle looks fine on the echocardiogram.

Rudy’s uniqueness is evidenced in that the indicators that it’s time for the Glenn usually come at 4 to 6 months of age.  There are still a few conversations to be had, but the docs feel it best that the timing of the Glenn be determined by Rudy’s physiology and not according to generalized timelines.  Dr. Harake is quick to point out that this is a major operation which shouldn’t be rushed into–especially with a patient with a track record of very challenging recovery from heart operations.  On his last cath, the high pressure in the pulmonary artery increased the risk factor.  This is something that might change in time, but given that the two key indicators aren’t pushing the need for the Glenn, there’s even more grounds to wait.

There are a lot of areas where we might accept our kids’ uniqueness.  Lots of times we actually celebrate it.  Admittedly it’s a bit challenging to know how to respond to it in this case because it continues our uncertainty.  That part of us that longs to be able to know the future and schedule things craves to have some knowledge about when something so significant is going to take place.  It’s not like we want it to happen, but given that it does it’s hard to escape that looming feeling.

As I’ve never heard “convenient” among the descriptions for HLHS, I guess this is just par for the course.  We are so grateful for doctors who are deeply committed to Rudy and wrestle over the best course of treatment for him.  I’m glad no one is swayed by general timelines.  I’m most glad that all of this means more time with Rudy here at home with us.  Sometimes it takes a concerted effort to be reminded of this, but that really is the priority.

Happy Halloween 2009

Our very own "Bob's Big Boy"

 

He thinks this is very funny!

 

Wilson a.k.a. Keith Moon of The Who, Brandon the caped 7th grader, Max the Fearless Racer and Olivia the Princess Fairy

 

Mom the Spider Queen and Dad as himself, um, a Nerd.

 

Ready to go!

 

Counting the stash...

 

Still smiling...

 Happy Halloween Everyone!!! 

 

 

Relishing the difference of this year

Trish just e-mailed these pictures from the La Patera “Hat and Mask” Parade and it brought back memories of all that was going on last year.  We weren’t around to see this:

Didn't think you could use "cute" and "skeleton" in the same sentence, did you?

Miss Grant did a brilliant job incorporating curriculum in the affair.  What’s Halloween without kids dressing up as “The Water Cycle”?

Max--because you can't have H20 without an enthusiastic "O"

All observed by one cheerful spectator and another perhaps more ambivalent.

It seems that part of the preparations for Halloween involves discussion of what one did and wore last year, which makes me quickly aware of contrasts.  Last year, we were just coming to grips with the fact that our quick little open heart surgery with the four weeks of recovery was turning into a more indefinite stay.  I remember Trish scrambling a bit from a distance to help Oma and Opa get the kids costume stuff together.  I remember the drastic shift one felt in leaving the quiet struggle of the ICU and finding oneself in the revelry of Westwood.  I remember thinking how this unexpected holiday in the hospital was a planning glitch (instead of the first of several we spent there). 

It made me wander back to an old post from last year and filled me with gratitude over the ground we’ve covered.   I’ve seen so many more moving examples of parents who summon the toughness I was seeing for the first time when I wrote that.  Rest assured, having missed last year, I’ll relish the fun that the simple ritual of dressing up and walking around the neighborhood brings for the kids, but many of our friends around the country whose celebrations will bear unique touches due to unexpected circumstances won’t be far from my heart.  I pray that there would be unexpected beauty and encouragement for these special kids and their families.  Owen, I’m so glad you should be home in time to trick or treat.  Josiah, Moriah, and Stellan–grace and peace (and maybe some contraband candy) to you and your parents.  Come home soon!

 

Multi-tasking Mishap

Exhibit A

Sanitized to an extreme!

For all you new trach moms out there, I recommend you not multi-task when boiling your child’s trach for the purpose of sanitizing it.    We change Rudy’s trach and replace it with a fresh, clean one each week.  I clean and boil the dirty trach and then once it’s dry, I pack it away for the next trach change.  Well, this past weekend I put Rudy’s trach on the stove while I prepared for dinner guests and tended to Rudy’s dirty diaper.  Max came in a bit later and said with a turned up nose “What’s that smell?”.  Somewhat irritated that Max was turning up his nose at the dinner I was preparing, I quickly responded “that’s mommy’s yummy potatoes, Maaaax!”.  Again with the turned up nose he looked at me quizically and walked away when I turned and noticed the smoke coming from the stove top!  Yikes!!!  No wonder Max had a turned up nose…it smelled awful!  Rudy’s trach looked like a over-toasted marshmallow and my pan was ruined…  More annoying than losing one of my most-used cooking pans is the fact that I have to track down another Shiley 4.0 Neo trach from our medical supply company (Apria…affectionately known in our household as “crApria”) which will inevitably involve more than one prescription faxed from our doctor’s office and several follow-up calls for which I have very little patience.  Oh well, we had fun with our dinner guests nonetheless and my potatoes turned out pretty good too.

We just haven’t had the heart to post at all since Logan’s funeral last week…in part because we’re tired, a little depressed and because the momentum we felt in Rudy’s treatment plan a couple of weeks ago feels like it has stalled a bit.  Some days it is really easy to wait for the Glenn especially because we are home and enjoying our fall together under one roof but then other days (like today) the wait is truly nerve-wracking!  (sigh)

We were relieved to get a call from the pediatrician’s office yesterday informing us that the H1N1 vaccination was in after a long delay.  I was instructed to come in with Rudy right away and to check in without mentioning why we were there.  Like everywhere else, our county received a very limited amount of vaccination doses…clearly not enough to go around…so going to get Rudy’s vaccination felt a bit like an undercover covert operation but we are grateful he made the cut.  Originally, Rudy’s doctor wanted all of us to get it as an added barrier of protection for Rudy but that isn’t possible at this point and after a call to the bigger kids’ doctor yesterday, it seems they’ve run out of the regular flu shot too so we trust the big kids will be their typical healthy selves this season and stay clear of any major bugs on their own!! 

While I had Rudy in the doctor’s office yesterday, I put him on the scale and he weighed in at 19 lbs 8 oz!  Rudy has outgrown formula and we started him on Pediasure two weeks ago which is high in calories.  The increase in calories seems to be helping him gain weight.  It’s still a delicate balance as an increase in volume can be problematic for his heart but because Rudy seems to be tolerating the higher caloric content of Pediasure, we can get him more calories in the same amount of volume.  The switch to Pediasure distracted us from making any headway with baby food…Rudy’s pretty uninterested in taking food from a spoon but we’ll start back up with our attempts now that he has transitioned to the yummy, vanilla pediasure shakes.  So, we move ever-so-slowly forward (but forward nonetheless) in the world of food and weight gain.

Lastly, Rudy had his annual assessment from Early Start Services this week that is overseeing his developmental progress.  Their assessment is broken down into 6 categories:  Fine Motor and Perceptual Skills, Cognitive, Language, Social/Emotional, Self-Care/Feeding and Gross Motor.  Overall,  Rudy is beginning to register in 5 out of the 6 categories at the 6-8 month age level and in 2 of the 6 categories at the 9-11 month age level.  As much as we would love to see him sitting on his own and becoming mobile, we are grateful for his progress and know these skills will emerge in time.  If they had a category for “smiles”, Rudy’s would register far beyond his years.