Packing The Overnight Bag

I pulled my overnight bag out of the garage to pack  for this week’s trip to UCLA and I had to laugh because it was still packed from Rudy’s last heart cath back in June!  I guess I was a little distracted when we got Rudy home and the scary thing is I didn’t miss any of the items that were packed away for half a year!  Silver lining? – one less item on my “to do” list this week (pack overnight bag…done).

My heart has been both anxious and excited to move forward as I’ve anticipated Thursday’s cath but, I admit, today’s news of Josiah’s passing has taken the wind out of my sails and I wish we could just scoop Rudy and the big kids up and hide somewhere far, far away.  That, however, is not an option.  We can’t go back, we can’t detour around it…we have to walk forward into (what feels like) the eye of the storm and pray.   And so, we ask all you prayer warriors to, once again, deploy on Rudy’s behalf and blanket him with prayers for wisdom among those planning his treatment, continued healing of his lungs,  a successful heart cath procedure,  an encouraging post-cath report and, most importantly right now, good health.  If Rudy catches a bug, the cath will have to be rescheduled and poor Maxi came home early today because he vomited at school.  At first we thought it might just be because he had a vigorous workout in PE after lunch but he has continued to empty his stomach – five times since getting him home – and, understandably, he’s fading fast.  I’m praying his body clears everything out  soon and he is then able to sleep it off.  Please pray Max recovers quickly and Rudy is protected from any virus or infection lurking around.  

Rolf and I will take Rudy down to L.A. early Thursday morning and Rudy’s cath will, most likely, start in the early afternoon.  For those of you who are freed up to check the blog on Thursday, we’ll post updates throughout the day.   We hope to come home on Friday with a date on the calendar for the Glenn!  Bless you, friends, and thank you!

Missing Josiah…

We’ve been overdue for a post and Trish is planning on writing one this afternoon.  There’s much on our hearts as we approach Thursday when we’ll return to UCLA for Rudy’s heart cath.

Even if a cath is among the less concerning procedures Rudy has had to endure, having to check back into the hospital brings on a flood of memories and emotions.  Our uneasiness is heightened by the news we just got about his fellow warrior, Josiah, whose HLHS battle ended on Sunday.  Even though thousands of miles separate us, our hearts are knit together with Milo, Erin, Daylia and Hazyl.  May God give them peace and comfort in circumstances where no words can.

More shortly–thanks for walking with us through this.

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.
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…

Rudy likes celebrating MLK Jr!
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.

Rudy’s view of the zoo…

Things are relatively peaceful in these parts so thankfully there’s not much to report.  We had a quiet weekend where we stayed close to home, which isn’t so bad when your home is close to the beach and the zoo.  The big kids enjoyed Saturday afternoon out in the surf.  Since Rudy seemed so excited by the ducks, we thought he’d really enjoy a stop at the zoo on Sunday.  Turns out he wasn’t all that excited.  Then we realized that, regardless of what species might have been before us, this was pretty much the view from his stroller:

Sorry, Rudy.

“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 you can walk on!

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

Celebrating the East Coast New Year! (9pm PT)

Not sure we'll make it to midnight...
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:

Father of the Bride

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.

Yum, yum
Rudy's front row seat to view the parade
Daddy's roses are prettier than the ones on t.v.
A new year kiss from Wilson
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…

Super Fan!

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!

Trach-Froggie helps Rudy celebrate 15 months!
Happy 15-month Birthday Rudy!