How is it possible that it is not only the start of a new year but also another decade!!!!  My memories of it turning 2000 are much too vivid for it to now be 2010!!!!  Yikes, can we all please slow down a bit.  My mind has been full today…reflecting on all that happened in 2009, trying hard not to worry about what is to come in 2010 and wishing I were with my oldest brother and his family in Indy as they celebrate the wedding of my niece Stefanie.  ‘Just got this pic sent to me from the reception that’s happening right now!!!…Technology is pretty cool:

Again I say “Slow down…life is happening much too fast!” 

The theme around our household today has been roses and football.  I woke this morning to breakfast in bed complete with one of Rolf’s fresh cut roses just in time to watch the Rose Parade on t.v.  Rudy and I watched the Rose Parade last year in his hospital room but I think he liked this year’s view a little better.

Once the parade ended, football was next on the agenda…the Capitol One bowl, the Rose bowl possibly the Sugar bowl a little later.  Rolf and Max had a very special treat with a quick trip to El Paso Wednesday and Thursday to see Stanford play in the Sun Bowl thanks to our best man Ruben (we chose wisely!).  Max was definitely in heaven…

And so, Wilson made it home safely from his church youth group trip, Rolf & Max made it home from the game and we all enjoyed New Year’s Eve at home under one roof over a piping hot plate of Olivia’s cheesiest macaroni & cheese she made with the help of her new cookbook.  A great start to the new year…

Today is also Rudy’s 15-month birthday…we continue to cherish each milestone!

Yesterday’s appointment with Dr. Harake was full of smiles as Rudy’s echo, once again, looked solid and his O2 sats registered at 85%!  (Rudy always has high sats in the cardiologist’s office…they must pump extra O2 through the office air vent system or something)  Yesterday’s appointment also marked our last scheduled doctor appointment before Christmas which means Rudy’s singing “I’ll be home for Christmas…” and I’m looking forward to a respite from medical offices for a couple of weeks.  I did, however, look ahead to my January calendar and realized the week of the 5th has an appointment each day of that week including a trip to UCLA to see the pulmonologist!  Oh well, that’s next year…we’ll hit 2010 running!  Ha 🙂  You know what they say…”New year, new out-of-pocket maximum!”

After talking with the team at UCLA, Dr. Harake feels our next step is to schedule a heart cath for Rudy in mid-January which will give everyone involved detailed information on which to base their decisions regarding the Glenn.  Rolf and I feel great about this plan and although the heart catheterization is an invasive procedure, we value deeply the information gained from it and appreciate the team taking measures to be as informed as possible before opening our little man up again. 

We’re still having to suction Rudy pretty regularly…I’m wondering now if it’s not due to some bug as no other symptoms have surfaced but rather maybe because of changes in our weather (thicker marine layer, cooler temps at night) and also maybe because he is simply more active these days…awake for longer stretches of time and quite the vigorous kicker!  Rudy received his 2nd H1N1 vaccination dose this week so I believe he is well protected from the flu now…the only vaccination he hasn’t been able to get yet is the one for RSV.   His docs here in town hoped to start the 5 dose vaccination back in October but because of a hiccup in the authorization process, he still hasn’t gotten it!  This was of concern to Dr. Harake and Dr. Abbott at this week’s appointments so superstar nurse Melody got on all the parties involved and it will hopefully be available the middle of next week.  (Oops, I guess we do have a quick dr. visit next week afterall).  It will be a relief to have that vaccination started as Dr. Harake has seen RSV undo in other patients the kind of progress Rudy has made…a foe Rudy just doesn’t have the reserve to fight at this point.  So, we continue to pray diligently for a covering of protection for Rudy…may he be our spiritual “boy in the plastic bubble” until we get past the winter season.

Speaking of superstars,  Nurse Elaine from Dr. Pornchai’s (UCLA pulmonologist) office has worked MANY hours on Rudy’s behalf trying to get a prescription for trach supplies filled by our friends at APRIA.  Rolf and I have purposed to not use Rudysbeat as a laundry list of complaints and rants and thankfully, there has been very little about which to complain in our journey but the lack of follow through and chronic mistakes made by APRIA has gotten to the point where we’re asking oursleves “Are we on candid camera?”.  If I were famous, I honestly would expect Ashton to pop out of the next APRIA delivery truck screaming “you’ve been punk’d man!!  The prescription was actually originally written back in April by Rudy’s ENT doc, followed up by another prescription in July from his pediatrician and then in October by Dr. Pornchai!!!  And, seriously, we’re not talking about random, obscure items here.  Well, EUREKA!!  This week we received a delivery from APRIA that included the HME trach filter we’ve been waiting for since April.  I emailed nurse Elaine right away to tell her the good news and ask for specifics on how and when to use the filter, etc.  “How long does the filter last?”, I wrote.  “Filter?”, she responded, “Isn’t it ‘filterS’.  You should use one filter a day…they should have sent you 30 – a month’s supply!”.  OH MAN…another call to our helpful friends at (cr)APRIA!!!

As a result, Rudy has a unique Christmas list for Santa this year…with Apria’s current success rate at actually getting something right where Rudy is concerned, I have more faith in there really being a Santa Claus who keeps a well-stocked supply of medical equipment and supplies next to the warehouses of toys.

RUDY’s CHRISTMAS WISHLIST

1.  A big, red ball     8fr red robinson catheters

2.  A cuddly teddy bear    sheets of pink poly-mem Quadrafoam

3.  bb gun     10cc saline bullets

Ho, Ho, Ho!

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…

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!

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!! 

Let the Holiday Whirlwind of Fun begin!!!