Celebrating MLK Day

We braved the harsh rainy weather early this morning to make our way to the annual Martin Luther King Day Celebration at the historic Arlington Theater in Santa Barbara. We felt it was worth bundling Rudy up and taking him out in this dreary weather to see big brother Max present his winning poem at the big event. Max was this year’s first place poetry winner in a city-wide competition among 1st-6th graders. It was a morning filled with state and local dignitaries, speeches and music but our favorite contributor was, of course, Max:

Live Together Poem by Max Geyling

We should treat each other equally

Black men and white men with

Black women and white women

And all other kinds of colors of people

We should bring each other flowers

In the early morning hours.

As brothers and sisters living in peace,

Our hatred and sorrow will be released.

If we listen to MLK Jr. and keep our cool,

We’ll perish as friends, not as fools.

Luckily it’s over where I live

Because I have friends of all colors.

We’ve noticed we can have fun

With the ones our ancestors called dumb.

We can play together,

live together,

cry together,

laugh together,

and die together.

At our school you won’t find one fool.

MLK day 011 — Miss Grant came in support of Max! -So sweet

Max was well supported by Wilson, Olivia and Rudy and his teacher, Miss Grant, who was kind enough to come as well. It was a special opportunity and Rudy enjoyed being a part of it all…

MLK day 013 — Rudy likes celebrating MLK Jr!

MLK day 015 — The Arlington Theater offers the added bonus of viewing the actual "Gone With The Wind" couch used in the movie! Rudy is wondering why he can't get a diaper change on it...

And so, we mark our journey with Rudy with yet another memorable holiday. ‘Just 10 more days until the heart cath…anxious and excited…and, as always, very grateful.

“The 12 Days In The Hospital”

The start of the new year has certainly directed Rolf’s and my thoughts to Rudy’s upcoming surgery but, apparently, it’s weighing on the kids’ minds too as Max and Olivia composed their own version of the following Christmas classic over the weekend…

“The Twelve Days In The Hospital”

On the twelve day in the hospital the doctors gave to me…

12 naps a day

11 x-rays of me

10 doctors operating

9 nurses dancing

8 hospital gowns

7 hopes for the future (how profound and absolutely sweet it this one!)

6 bottles of milk

FIVE STITCHES IN THE STOMACH

4 stuffed animals

3 pacifiers

2 dirty diapers

and an open heart surgery!

As scheduled, Rudy’s dance card has been full this week with visits -so far- to Dr. Harake (SB Cardiologist) and Dr. Pornchai T. (UCLA Pulmonologist). Both appointments went pretty well…no changes on the heart front and we have the heart cath scheduled for Thursday January 28th. Rudy is second on the schedule that day so ours will, most likely, be an overnight stay like last time. There is also the remote possibility that they will go ahead and admit Rudy into the hospital for the Glenn surgery at that time depending on what they find during the cath so we’ll plan accordingly. Either way we hope to have a plan for the Glenn as a result of this heart cath.

Rudy and I had a nice drive down the coast to L.A. on Tuesday. Dr. Pornchai did another thorough examination of Rudy and was a bit concerned this time with the way he was breathing. His breathing was a bit labored but he was also a little worked up after the long car ride, a late feed, being examined (normal baby stuff). I didn’t notice much difference from the way he normally is which then left me feeling like maybe I’m not reading Rudy right…what am I missing?…should I be concerned?…etc, etc. I’m tellin’ you, the mind games you start playing with the smallest of triggers can drive you crazy. Dr. Pornchai added a nebulizer med to Rudy’s regimin so we’ll start that, keep an eye on him and trust that we’ll know when something is wrong…ugh!

Of course, we had to pop up to the CTICU quickly while we were in the neighborhood to say “hi” to our staff friends and the sweetest part of my day was running into Dr. Andy M. who we haven’t seen since we left the hospital back in May. As one of the attendings in the PICU/CTICU, Dr. (Papa) Andy oversaw Rudy’s care on numerous occasions and he was so pleased to see how Rudy has grown. In his sweet, quiet way he just starred at Rudy and marveled so sincerely at how beautiful he is. Ahhhh, music to a mother’s ears. It is always so reassuring to check in with the folks on 5 east as they know so intimately how far Rudy has come. As the atmosphere in the unit on Tuesday was, once again, serious and intense, I hope our quick visits are mutually encouraging!

Did I mention Rudy and I had a nice drive down the coast? We are definitely blessed with a pretty commute down to L.A….especially in the winter time. I LOVE Santa Barbara in the winter… the sky is so clear and blue, the air is fresh and you can actually see the channel islands! Rolf captured these pics of Wilson on Sunday…a calm Pacific Ocean-

Water calm enough for Rudy!!!…I look forward to the day when Rudy can join them on one of their kayak excursions!

Happy New Year 2010

new years 001 — Celebrating the East Coast New Year! (9pm PT)

new years 006 — Not sure we'll make it to midnight...

new years 007 — Midnight on the West Coast...Happy New Year Big Boy!

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.

new years 009 — Rudy's front row seat to view the parade

new years 011 — Daddy's roses are prettier than the ones on t.v.

new years 012 — A new year kiss from Wilson

new years 013 — Everyone ended up in mom and dad's bed for the parade!

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!

15 months 005 — Trach-Froggie helps Rudy celebrate 15 months!

15 months 001 — Happy 15-month Birthday Rudy!

The House Is Still All A’Bustle!

We continue to take full advantage of our Christmas vacation by engaging in a number of our favorite activities. Rolf and the big boys headed up to Solvang first thing Saturday morning to get a good day of skating in at the skatepark. It still amazes me how the boys can jump back into the bowl and skate as well as they do especially since months can go by between skating treks to Solvang. Thankfully, it was a fun, injury-free trip and a great start to Wilson’s “ultimate-boarder” week as he took off the following day for a snowboard trip with the church youth group and plans to surf on New Year’s day.

Sunday was Livy and Rudy’s turn as they headed off to the lake near our house with a bag of bread to feed the ducks. The last time Rudy ventured out to feed the ducks he wasn’t able to focus on them very well so it was a real treat to see him get so excited this time…a clear sign of growth and progress.

ducks 004 — It's official...Rudy likes ducks!

ducks 015 — I think he likes his Daddy too...

And so the week continues with a couple of visits with good friends, good football to be watched and good play!

Holiday At Home Highlights

Wisely, Rolf turned off Max’s alarm which was set to go off at 6:30am when we went to bed on Christmas Eve and that bought us another hour of sleep Christmas morning. We were awakened by the troops at 7:30am ready to start the day…

The big kids proudly presented their gifts to Rudy first thing…a race car Wilson made in shop class, a teddy bear from Max and a blanket Livy sewed with her Girl Scout sewing skills. I think Rudy was wondering why everyone was home on a weekday and what all the fuss was about but he quickly settled back and watched in amazement at all the excited activity.

Christmas Day 2009 will also be remembered for being the day Rudy had his first shower with Daddy…He is getting much too big for the sponge baths on the kitchen countertop he has been getting and not quite ready for sitting in the bath tub so we thought we’d try something new and he liked it…except when he arched his back and got water all over his face…good thing Daddy has a strong grip…he was a slippery little sucker.

Once we were all cleaned up and dressed, we were off to the Rescue Mission for the Inaugural Santa Barbara Rescue Mission President’s Turkey Bowling Tourney! It was an exciting afternoon of athletic excellence!

Christmas day 011 — There's more than one way to tenderize a turkey!

Our day ended with us all snuggled in bed at home….once again, so grateful to be home. Rudy ended the day grateful for his new slinky and big red ball:

Christmas Eve 2009

Rudy’s first Christmas Eve at home started off with a morning visit with our friends at Bethel House…donuts, a vicious game of “Christmas Basket”, ornament crafts and Christmas carols…we couldn’t have fit anything else in!!!!

We were home long enough for the boys to take care of the chickens they are sitting for vacationing neighbors and for a surprise visit from Nurse Aliza and her family in Santa Barbara for the day…such a fun treat!!

Next, we were off to the candlelight service at church that included “O Holy Night” and a little time with Rayme, Brett and Emma…Rudy liked his snuggle time with Rayme.

xmas eve 005 — Big hugs from Rayme and smiles from Brett...

xmas eve 006 — We were blessed to be with the Elliotts but there was no doubt that Logan was profoundly missed...

Our day ended at home with beef stew, Martinellis and a favorite Christmas movie.

xmas eve 010 — Blessed to be home but missing family far away...

The last we checked on the NORAD website, Santa was in Boise, Idaho…it’s time we went off to bed before Santa arrives…Rudy beat us to it…

Rudy’s Christmas Wishlist…

gregs imageWEB — Lots of smiles!!! We'll all be home for Christmas!

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!

Finally!!! It’s Official…

…the Christmas season is upon us!

The outdoor lights are hung…

A little shopping has been done…

And holiday haircuts are checked off the “to do” list…

It’s time to celebrate!! The presence of Jesus in the life of our family has not been more apparent or meaningful to us than in the past year and a half and we are particularly grateful to be starting this advent season home together under one roof among the sights, sounds and smells of the season that are familiar and comfortable. It’s fun for all of us to watch Rudy experience Christmas at home for the first time…he has an army of nutcrackers watching over him on the shelf above his day crib that he can’t keep his eyes off of…and the bright lights of the Christmas tree are equally mesmerizing. All the festivities surrounding Christmas may be new to Rudy but I think he already gets the reason behind the season. In part, because I think his guardian angels must have filled him in. I might have shared this story before but about this time last year, Rolf and I transitioned to taking turns at Rudy’s bedside. I would be at UCLA Mon.-Fri. and Rolf would be with Rudy on Saturdays and Sundays. I remember being heartbroken on Fridays when I had to leave Rudy by himself until Daddy arrived early Saturday morning. To make it a little easier on myself, I envisioned Rudy’s room filled with an army of angels when I left on Friday and when I returned on Monday, I’d ask him about the stories the angels told him…”Did they tell you about Noah and his crazy high sea adventures?…Or about Joseph and his coat of many beautiful colors?…Surely they told you about how Jesus came to earth as a little baby just like you?…Or how he grew and performed many miracles just as He’s doing in you right now!”. I’m sure Rudy’s angels kept him entertained with all kinds of wonderful stories all leading to the same message…”Jesus loves you Rudy”.

The other reason I believe Rudy “gets it” this season is because I think a baby like Rudy doesn’t go through a journey like this without a visit or two from the big guy himself! How many times did Jesus come to bring comfort or, on some days, physical life itself through the care-givers and special visitors that were put in Rudy’s path…countless times, I imagine, which is why I believe Rudy is very familiar with Jesus…intimately aware of the miracle of His presence. Rudy may not be old enough to articulate it but he is LIVING it and that is my prayer for this Christmas season…that all the joys of the season be deeply rooted in the knowlege that Christ’s presence brings hope, miracles, life, comfort and peace to a weary heart and that by embracing that reality, the weary heart is transformed! That said, Blessed Advent dear ones! Jesus loves you too! 🙂

Joy, Joy, Joy…

P.S. Rudy turned 14 months old yesterday which means he has been home for 7 months–the same amount of time he was in the hospital!!! Considering some wondered whether or not we could have him home for six weeks, this is remarkable. JOY, JOY, JOY

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…

chelsea at tiffanys — 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!

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…

domino Rudy — 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

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