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:

You’re Invited!

Let's Party!!!

With school now underway, it’s time to look ahead and do a little planning because  in five short weeks Rudy will turn 2 years old!!!  An astounding realization and one that brings tears of both deep joy and a bit of anxiety as we continue to live life from one monthly cardiology appointment to the next eagerly awaiting the Glenn!  The “not knowing” has always been the hardest part of this wait but having a productive distraction definitely helps and so in lieu of a party and all the gifts this year, our family will be walking in the American Heart Association’s Start! Santa Barbara Heart Walk on October 9th in celebration of Rudy’s birthday and we would like to invite you to join us!

By participating in this year’s Heart Walk, we hope to raise research funds vital to a healthy and active future for Rudy and kids like him. Will you consider  joining our campaign by donating today or joining our team in honor of Rudy?  We are excited that the money raised by our team will fund pediatric research and children’s programs specifically!!  Click on the link below to visit our family’s personal donation page where you can learn more:

As team captain of Dr. Harake’s team, my goal is to recruit 15 team members.  If you are interested in registering for the walk, please follow this link to our team page:

It’s impossible for us to come to a major milestone with Rudy and not think of the precious heart friends we have lost in the last 24 months…Katie M, Baby Angel, Ethan S, Logan E, Josiah W…  and so we walk not only in honor of Rudy but also in loving memory of these precious ones whose short lives impacted us deeply.

Thank you, in advance, for helping to make a difference because your donation WILL make a difference.  Rudy’s condition was a death sentence less than 20 years ago and now there is a sophisticated treatment plan born out of research and development!  Imagine what could be done with an even greater understand of the defect!!!  We are honored to partner in this effort.

Of course, it’s not all business!  For those of you who are close enough to walk the walk in person, we will gather at beautiful Chase Palm Park the morning of the event, distribute “Rudy blue” Happy Birthday balloons to all the “party walkers” and celebrate with cake, ice cream and party favors at the finish line!!  What better way is there to spend a gorgeous October morning in Santa Barbara?  We hope you can be a part of the fun!  ‘Just let me know you’ll be coming and I’ll send you more information.  🙂

"I'll be there!!!"

First Day Of School 2010

The morning hustle and bustle is back but, I must admit, it’s amazing how much easier the “before school routine” gets as the kids get older.  Olivia set her alarm last night and was up, had breakfast, got dressed and brushed her hair/teeth AND made her bed while I was in the shower (and I take short showers!).  All I did this morning was make the lunches and Olivia even started that process before I could get to the kitchen.  All were in good spirits this morning and seemed both nervous and eager to get to school…definitely excited to reconnect with old friends and I’m hoping they all make fun, new friends this year as well.   This is a big year for both boys as they are “top dogs” on their campuses…having a 6th and 8th grader means two promotion/graduations at the end of the year!  🙂  My prayer for them both is that they will demonstrate responsibility and leadership in their roles as veterans on campus and enjoy the freedoms and advantages that come with acting responsibly. 

First day of school - August 23, 2010
6th grader - last year of elementary school!
Proud 8th grader!!!
Where did everybody go?

So, it’s just me and Rudy this morning…we have a couple in-home appointments for Rudy and then a list of errands to run so hopefully we’ll be too busy to miss the big kids too much.  🙂 

Rudy charming his way out of PT/OT

I think we’ll need to plan some playdates with Rudy’s gal pal Stella since she’s in the same boat with her big sisters off to school…

Stella and Rudy
Stella (aka Rudy's ottoman)
"Hubba, Hubba!"
Precious little ones!

Thankful, today, for friendships!!

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…

Our Post-Bronchoscopy Fun

Rudy and I arrived home safely last Wednesday after our overnight at UCLA…it’s amazing how much the trip down for Rudy’s bronchoscopy took out of me and we had just a day and a half to settle in and get reorganized before the next round of summer fun began…here’s a little pictoral recap:
On our way out of the ICU, Rudy and I ran into Fellows Leigh and Bobby and Dr. Dan…we just had to stop for a quick visit in the hallway!
Drs Leigh and Bobby


Fun with Dr. Dan

Dr. Dan is a popular guy in AND outside the UCLA community…he even has his own table at Barney’s Beanery in Westwood where a picture of Rudy is proudly displayed (Ha)…even the UCLA facility employees who happened to be seated at Dr. Dan’s table when we stopped in were quite impressed by Rudy’s celebrity!!  (Double Ha)

Rudy's table of honor at Barney's in Westwood (thanks to Dr. Dan)
This week marked the early celebration of Olivia’s 8th birthday with an awesome garden pool party and EPIC water pinata!  Rudy stayed inside away from the squealing mob under the watchful eye of friends Lisa, Cheryl and Aunt Andi…he was happy to let Livy have the limelight for the day!
Livy's Water Pinata!

 Aunt Andi and cousins Mayali & Kyra made a stop in California en route back home to Boston from their summer trip in China!  It’s always a treat for Rudy to see extended family (fun for the rest of us too)…

Fun with Aunt Andi

 We continue to take full advantage of these last two weeks of summer vacation!  Rudy has his next monthly cardiology appointment with Dr. Harake this Friday…will update on his condition then.  Thank you for your continued interest and support!!!  Blessings…

Greg's latest - 8-9-10

A Welcome Fit For a King


It’s 9am and after a night of observation, Rudy will be discharged sometime before noon today.  As Rolf posted earlier, we had a smooth (albiet early) trip to UCLA yesterday morning, an easy admit into the PCU for pre-op, was in for the bronchoscopy & direct larynoscopy on time and back in the PACU (recovery) in about an hour!  Because of a shortage of beds in the PICU, we hung out in the PACU until a bed opened up at 4pm but Rudy woke up from the anesthesia happy and then took a nice afternoon nap so the time went pretty fast.  Although I secretly hoped they would send us home because of the bed shortage, I was happy to stay and err on the side of being cautious and, as it turned out, we had a great night connecting with old nurse/doctor friends.  Word spread that Rudy was on his way up from recovery and he received a warm welcome fit for a king!  How very blessed we are to have such great care and engaged medical professionals.  I took full advantage of being in the unit and tried to tie up a few loose ends regarding acquisition of a wheelchair and consults with a few of his docs.  All in all, folks around here are amazed at how he has grown and loving how interactive he is now…he is giving quite a few kisses and smiles to everyone who comes in to see him and our overnight stay has been a mutual encouragement I think!  🙂  So we’ll pack up and head home in an hour or two.  Thanks for your prayers!  As Rolf mentioned, Rudy will need a couple of  procedures when it comes time to wean him from the trach but in general there is much to be grateful for in the development of his airways!  Yippy!!

4:45am arrival time at UCLA ain't so bad!


Waiting in pre-op...Rudy and his bear have matching pot bellies


Rudy's PICU Welcome!


Rudy's reunion with Dr. Mary (pronounced "Marie")


Friends popping up from behind windows to see Rudy!

Bronchoscopy Update

Rudy’s bronchoscopy involved a rather challenging time change for us–from the Pacific Daylight Time Zone to the Hospital Time Zone.  In the round-the-clock world of the UCLA Med Center a pre-op check-in time of 4:45AM is part of business, but it was a bit of a start for us.  It meant getting Trish and Rudy up at 2AM and then on the road by 2:45–at least there’s not much traffic at that hour.

Trish called shortly before lunch to say that everything went very smoothly.  Rudy went in at 7AM and was back in recovery by 8:30.  He took a bit to wake up and is a bit bugged by the lines attached to him (that’s actually an encouraging and new development to see him spunky instead of lethargic and resigned).

Dr. Shapiro said everything looks good except for a node of scar tissue just above the trach that will require surgical removal when it comes time to remove the trach.  This is not uncommon, but it will likely mean that the trach will stay in unless it is certain that we have over a year to wait before the Glenn (highly unlikely).  She said that Rudy’s vocal cords look mushy (OK, that’s our term because we forgot the science word Dr. Shapiro used).  It simply means they are not toned and tight like they would be through vocalization, but there is no reason to believe they won’t develop properly when the time comes.

Dr. Shapiro would like to keep Rudy overnight, but there is a bed shortage upstairs so that may change.  Thanks for praying.  Now, I’m about due for another cup of coffee…

22 Months Old Today

Happy 22 Months! August 1, 2010

Here it is…August 1…the start of another new month!  Even when one tries to take life one day at a time and stop to savor the moments that make up each day, the days add up so quickly and then “poof” another month flies by.  The milestone of each month for Rudy is a milestone of hope and gratitude and I can’t help but look back at the start of this journey at the time of Rudy’s diagnosis (2 years ago this week!), at the first internet searches we made for “Hypoplastic Left Heart Syndrome” to try to figure out what in the world our little boy had and what we were facing and at the first blog sites we found of little ones well into their fight with HLHS at 18 – 24 months wondering if Rudy would make it that far and…he has.  With all it’s twists and turns, ups and downs and lingering unknowns, we stand before God today profoundly grateful for the past 22 months.  Rudy truly has captured our family’s heart beyond what I allowed myself to dream…I’m still easily overcome by fear but, oh, so thankful.

The past week was full with my sweet family’s return from Alabama, two visits with old friends from out of town and a garage sale the kids and I have been planning for the past month!  Needless to say, Rudy was thrilled with his Dad and big sib’s return home, was pretty smitten by our guests and thought conducting a garage sale is a GREAT way to spend the day!  The common thread for Rudy in all of the above was ATTENTION, ATTENTION, ATTENTION!  My, how he loves to be a part of the action!  🙂  We have just 3 weeks left of our summer vacation and then Rudy is back to long, quiet days with just Mom.  Ha

Rudy's glad everyone is home again!

This week will bring another trip down to UCLA for Rudy’s bronchoscopy.  Rudy and I will head down early Tuesday morning and he will likely be held overnight for observation…if all goes well, we should return home on Wednesday.  This procedure allows Rudy’s ENT, Dr. Shapiro, to take a detailed look at the inside of Rudy’s airways.  She will look for scar tissue and whether or not the cartilage supporting his trachea is strong – crucial to his success weaning off the trach.  We anticipate a good report and pray he doesn’t pick up a nasty bug while in the hospital (his last bout with c-diff was NOT fun!).  So, we’ll certainly have more details to share on Tuesday.

I want to thank everyone for the thoughtful blog comments, emails and cards that we’ve received since my Dad’s passing!  It’s hard to respond to everyone individually but I just want everyone to know how much I appreciate the encouraging words and prayers.  I’m still processing all that I experienced during my visit back to Kansas (some amazing highs and bitter lows) and seeking God for wisdom and understanding as I move forward in grief and in life…your prayers are uplifting and I thank you.