My, oh, my!!  Yesterday was so full and so special at the Santa Barbara Heart Walk..it’s hard to absorb it all!  We were blessed with another gorgeous day and a picturesque spot right along the beach to set up our Team Rudy tent.  We had over 50 friends join us for the walk which was evident to all who saw the sea of Rudy blue balloons scattered throughout the route.  We enjoyed sharing the day with friends from church and the SBRM, eight of Rudy’s little buddies, the Westmont College baseball team, nurses, dear friends from L.A., a handful of Livy’s Girl Scout sisters, school friends of Max’s, Wilson and the DPHS drum line, the DPHS cheerleaders and about 600 other Heart Walk participants!  🙂  Team Rudy was recognized as the Top Fundraising Team with a grand total of $8385.00…we are so proud of our team’s remarkable effort.

One of the many special highlights of the day was meeting a beautiful young couple – Jeni and Nick Busta.  At the age of 25, Jeni is one of the oldest HLHS survivors and I was introduced to her story shortly after Rudy’s diagnosis over 4 years ago.  I had heard of Jeni and her husband Nick a few times since Rudy was born but hadn’t had the opportunity to meet them until yesterday.  They just happened to be visiting Santa Barbara for the day and came down to the Heart Walk event to cheer on a friend who was participating.  Always on the lookout for CHD families, Jeni and Nick wandered over to the Team Rudy tent and I recognized Jeni the minute I saw her!!  I can’t tell you what an encouragement it was for me to finally meet her – a true inspiration to countless kids and their families in the heart community.  They even ended up walking part of the route with us and staying for Rudy’s birthday celebration!  We will definitely be following up with the Bustas for a longer visit – I have soooooo many questions for them both.

Rudy tolerated the day well and even took a few steps of his own at the start of the walk!  All in all it was a special day for our family and, we pray, a key effort in the battle against heart disease and congenital heart defects.  Thank you dear friends both near and far for your outstanding show of support.  Here’s a glimpse of our day.  Go, Rudy, Go!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Happy 4th Birthday Eve Rudy!

 

 

 

 

 

The time has come once again…all of our hard work and fun preparations are nearly complete and it’s time to walk and celebrate!  The SB Heart Walk is Saturday and for those of you who are able to join us, please scroll down for some important details!  We are just $30 away from our personal fundraising goal so if you thought maybe you’d like to donate after reading our appeal a while back and haven’t done so, please follow this link to our personal page and help us reach our goal of $6000…Team Rudy has surpassed it’s goal of $7000.00 total!  Well done everyone…another successful year.  In the three years our family has participated in the Heart Walk, we (that’s the “we” that means “Rudy’s community”) have raised very close to $28,000.00 TOTAL!!!!  Remarkable!

And so, as in years past, we will walk on Saturday in celebration of Rudy, in honor of loved ones affected by heart disease and stroke and in sweet memory of our heart buddies that have passed away since our journey with Rudy began…Katie, Angel, Logan, Josiah and Ethan.  Their lives and the courage of their families are a daily reminder to me of the precious gift each day is!

On behalf of our family and the American Heart Association…Thank You!

Event Details:

Santa Barbara Heart Walk

Where?  Fess Parker’s DoubleTree Resort (in the rotunda)

When?  Saturday September 29, 2012

Time?  9am – Activities; 9:50am – Opening Ceremony; 10am – 5K Walk

The festivities in the rotunda will begin at 9am so please feel free to come early and take advantage of the fun booths, bounce house, etc.

The “Team Rudy” tent will be set up right across the street from the rotunda on Cabrillo (next to the crosswalk).  We’re asking everyone to meet at the “Team Rudy” tent no later than 9:30am to get their Rudy Blue Balloon.  We’ll walk over to the opening ceremony in the rotunda together at 9:45am.  The walk will begin at 10am (the route is along Cabrillo to the pool, back down Cabrillo to Milpas and then a quick return to the resort).  We’ll meet back at the “Team Rudy” tent after the walk (anytime after 11:15am) to relax, enjoy each other’s company and EAT CAKE!  Ha 🙂

*Be sure to wear “Rudy” blue (a.k.a. turquoise or light blue)!!  We’re looking forward to a wonderful morning…hope you can join us!

We got it!  We got the call to move forward with the plan to decannulate Rudy’s trach and thanks to Rolf’s mad photoshop skills, we can give you the little picture preview above!  Ha Ha  It’s a bit surreal and, I admit, I have mixed emotions but the bottom line is that it’s a good step for Rudy and sweetly timed as we approach another big milestone in just two weeks…his 4th birthday!  🙂

How strange it is to remember how Rolf and I felt when Dr. Rick sat us down in February of 2009 to tell us that we had run out of options and it was time to trach Rudy…ugh, we felt so defeated and terrified and now, here I am, barely able to remember a day when Rudy didn’t have his trach, all the trach care second nature and a little scared to say “goodbye” to something Rudy has relied on for so long!  This journey is so twisted and manic at times!!! Ha

So, the “big picture” situation is that his team of cardiologists are in agreement that Rudy is not a candidate for the Glenn and therefore will not be scheduling any major heart surgery in the foreseeable future.  😦 Based on this assessment, they have given their consent to remove Rudy’s tracheostomy which will hopefully give him a greater range of mobility in general and reduce his risk for infection, etc.  It’ll make pool time a lot more fun too and open up the opportunity for Rudy to learn how to swim!!  🙂 It will mean, however, that he’ll need to learn to tolerate the nasal cannula through which his O2 will need to be administered 24/7 and he’ll need to be intubated during future surgical procedures which isn’t pleasant  😦 but the pros certainly outweigh the cons at this point. 🙂

We’ve already made contact with Dr. Nina’s (Rudy’s ENT) surgery scheduler and have reserved Rudy a spot in the OR at UCLA on Tuesday October 16th!! He’ll need to stay overnight for observation so if all goes well, we’ll return home on the 17th minus the trach and able to post a pic of the real deal!  🙂

Yay! BIG stuff!  BIG step! Excited! Nervous! Grateful!  Taking it all in…one day at a time!  🙂

With Labor Day behind us, the fall schedule is definitely in full swing and it was Rudy’s turn to head off to his first day of school today.

Rudy’s new school nurse, Evelyn, came to the house early this morning to get acquainted and learn Rudy’s care regimen before the bus arrived to take them both to the Bear Club classroom.  Our Rudy was happy to see bus driver Rudy again who has been reassigned to our Goleta route and happily went off to school with a big wave and a confident “Bye, bye Mama”.  Rolf and I stopped in at the classroom a couple of hours later to make sure his medical supplies at school were well stocked and he was settled.  Rudy was happily playing music with Teacher Diane and Nurse Evelyn when we left and fast asleep when he returned home on the bus (ha)…a tiring but satisfying first day for the Rudster…

As always…SO grateful for the great schools and quality education ALL of our kids are experiencing in our community’s public school system and praying for a lifelong love for learning to be stoked in Rudy and his sibs this year.

As we continue to focus on the adjustments for our family this fall season, our thoughts and prayers are with Daisy and her family as they are in Israel pursuing treatment for Daisy’s cancer that is not available in the U.S. Rolf and Olivia participated in a 3 mile paddle this past weekend in support of Daisy!  Love and hugs to you sweet girl!

Rudy had an appointment with his pediatrician and gastroenterologist  last week and has his monthly appt. with Dr. Harake tomorrow.  It’s always fun to see Dr. Kelts (GI) but it was particularly fun to go to his office last week because we got to see our friend Tera!!!  Tera is a fellow La Patera, GVJH and DPHS mom and friendly neighborhood peds nurse on whom we have called many times when we’ve had those late night questions or concerns.  Tera kindly filled in for  Dr. Kelts’ vacationing nurse so we got to see our friend do her “professional nurse thang” on the clock for a change!  🙂  I love living in a small community where “everybody knows your name”.  Familiarity and friendship in the mundane daily details of a journey like this one brings such comfort.

We’ll be sure to report on any new news we glean from our time with Dr. Harake tomorrow…hopefully word from the cardiologists about decannulation!!!!!  🙂

Thank you for your prayers leading up to the start of school.  We are blessed by your commitment!

Well, we’ve made it to Day 3 of the 2012-13 School Year!  Ha Ha  The big sibs all headed back on Monday at the start of what’s turning out to be the hottest week of our summer – that’s just wrong!  🙂  All are coming home pretty wiped at the end of the day but generally pleased with their teachers and classes.  Rudy has been a little lost with everyone gone during the day.  On Monday he periodically headed down the quiet hallway knocking on each of the kids’ bedroom doors in search of a playmate – too sweet!

Rudy’s new teacher paid us a home visit yesterday to get acquainted before school starts for his class on Tuesday.  Teacher Diane is sweet and will be a fun addition to the Bear Club family.  I was informed yesterday that he’ll also have a new nurse so we hope to meet her before Tuesday as well…lots of adjustments ahead for Rudy next week so we’ll take it slow if need be.

We’re looking forward to another great year for Rudy and the big kids.  I’m praying specifically that this will be a stable year for Rudy physically and that the underlying anxieties in our household regarding Rudy will be outweighed for the big sibs with a strong sense of encouragement, affirmation and hope throughout their long days away from home.

Lots of Geyling love to you and yours!!

Well, there is no stopping it…summer 2012 is coming to an abrupt end and the full schedule of work, school, therapy, fall sports, doctor appts, etc starts bright and early Monday morning.  The big boys have already gone to their school orientations/check-ins to turn in paperwork, get school pics taken, pick up class schedules and school IDs (this week feels VERY productive).  Olivia finds out her class placement tomorrow (Friday) and Rudy is enrolled and ready to start school at the Bear Club on September 4th.  As always, I’m sad to see summer end but I know we’ll all enjoy getting back into a structured routine once we adjust to all the changes this season brings.

Rolf and I had hoped to take our family on a summer vacation up the coast for a week or so this year but between Wilson’s packed summer schedule and other conflicts our big plans got whittled down to a long weekend getaway this past weekend.  It was short but sweet and a nice family memory maker nonetheless.  Our trip included  a very special visit with one of Rudy’s heart buddies for whom many of you have prayed…Moriah and Rudy had their first face to face, dare I say, “date”!!!  The big kids came dutifully along ready to patiently endure a visit with “Mom and Dad’s Friends” until they discovered how hip and cool Justin and Victoria are.  Come to think of it, we realized on the drive home that J & V are actually closer in age to our kids than they are to us, so we’re glad all the young kids tolerated us old-timers being around (sigh).  But what an inspiration to be around another family that sets such an example of how to walk through life with a medically fragile child.  We LOVE you, Nelsons,  and feel even more connected after getting a chance to hug tight and share common struggles and joys.

The big kids also had a chance to connect with old friends Emmy and Steve-0 (who they haven’t seen in a few of years)…they are significant to Rudy’s story as their family was visiting Santa Barbara the week we got Rudy’s diagnosis in August of 2008…a sweet comfort during that most scattered and frightening week.

Sadly, another member of Rudy’s team is moving on and we had to say “goodbye” to OT Julie last week.  We will miss our “snack” dates with Julie during Rudy’s oral therapy each week but we wish her well and are grateful for her investment in Rudy this past year.

No word, yet, on decannulation from the cardiologists down south so we’re still waiting to schedule that procedure with Dr. Nina…the cycle of routine “specialist appts” starts next week for Rudy so he’ll be seeing a variety of docs the next couple of weeks including Dr. Harake again.  Hopefully he’ll know something by then if not before.  In the meantime, we’ll go ahead and focus on school and upcoming fall events like the Heart Walk…be sure to let us know if you’d like to join us for the walk.  There is still plenty of time to make a donation if you’d like...here’s more information.

Thank you!  I’m keenly aware today of the many things we have for which to be grateful.

I haven’t wanted to publish an update this past week and bury our post about the Heart Walk so, in case you haven’t checked-in in a while, will you please take some time to read this post and join our fundraising effort for the American Heart Association?  🙂  We are so grateful for the swift and generous response from many already!

Rudy is back to his energetic self after his heart cath and our family is back to it’s fast-paced slew of activities after laying low for a few days.  Rolf, Max, Olivia, Rudy and I drove down to L.A. on Thursday to pick up Wilson at LAX upon his return from Costa Rica.  It’s good to have him home and we look forward to hearing more about his first foreign missions experience as he rests up and settles in!

Rudy had a follow-up appointment with Dr. Harake this week.  It was a quick stop…no echo…just a quick check of Rudy’s vitals and O2 sats.  Dr. Harake wanted to make sure Rudy tolerated the 5-hr heart cath procedure okay and we spent most of the time talking a little more in detail about the cath results.   As we reported after our consult with Dr. Dan, Rudy is still not a clear-cut Glenn candidate so there is no plan for any treatment to his heart at this time.  If there is a move toward the Glenn, then there will most likely be a need to coil more collaterals before surgery.  One of the problems with coiling collaterals is that, over time, new collaterals grow to replace those that were shut down–a losing battle in many patients and especially in Rudy’s case where the scarring from the pleurodesis he needed creates an even more fertile field for them to multiply.  Most of Rudy’s collaterals are growing off of the subclavian artery so Drs. Harake and Dan are considering a future heart cath where they will line the inside of the subclavian arterty with stents to literally block any more collaterals from growing.  ‘Makes sense to us so we’ll revisit that idea when the next cath date comes around.

Dr. Harake also took the time to explain to us what Dr. Dan meant by a “modified Glenn” during our consult with him after the cath.  (Recorded here as best as we understand it…)  In a normal functioning body, the oxygen-poor blood from the upper part of the body flows into the superior vena cava which takes it to the right side of the heart to get pumped into the lungs to get oxygenated.  Once oxygenated, the blood travels to the left side of the heart to be pumped to the body.  In a HLHS heart, the circulation of the blood needs to be rerouted so that the RIGHT side of the heart pumps the newly oxygenated blood to the body.  A classic Glenn surgery is defined by disconnecting the  superior vena cava from the heart and redirecting it to the right pulmonary artery so the “blue” blood drains directly into the right lung to get oxygenated.  Nowadays, a Glenn is usually bi-directional meaning the SVC is still severed from the heart but is attached to the pulmonary arteries in such a way that it flows to both lungs.  The modified Glenn that Dr. Dan is talking about is a classic Glenn that attaches the SVC to Rudy’s left pulmonary artery sending the blue blood to Rudy’s GOOD lung specifically as his right lung is the one most compromised.  Dr. Harake doesn’t seem as convinced a modified Glenn would be necessary… he feels the blood would naturally drain to the better lung in a bi-directional Glenn because there would be less pressure resistance.  It’s helpful to have a better understanding of it all but, of course, it’s all talk about a hypothetical scenario at this point so we’re not spending too much mental energy on it.   Rudy needs to be a good candidate for surgery regardless of which direction the team takes in surgery so we’ll just cross that bridge when/if we come to it.  We are just so grateful for the amount of physical, mental and creative energy Drs. Dan and Harake are putting into Rudy.  We are blessed to have such skillful and competent docs who have a good balance between focusing on the needs of today while thinking through potential options for the future.

So, our next step is to wait for Dr. Harake to consult with the rest of Rudy’s team at UCLA.  If the they decide not to schedule any procedures in the next 12 months or so then I’ll call Dr. Nina’s scheduler and get Rudy a date in the OR for decannulation!  Because Dr. Woo (pulmonologist) and Dr. Nina (ENT) have both given their consent to pull Rudy’s trach, the final call lies with the cardiologists.  Other than that, we wait and get ready for school, of course!  🙂  The big kids head back on August 27th and Rudy starts on September 4th…summer is winding down far too fast.  We’re definitely going to make the most of our last two weeks of summer vacation so stay tuned!  Ha Ha 🙂

Blessings Dear Ones!!!