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!
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!
Santa Barbara Heart Walk
Where? Fess Parker’s DoubleTree Resort (in the rotunda)
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!
The Heart Walk is just 10 days away and excitement is building…the Dos Pueblos drum line (of which Wilson is a member) will be helping to kick-off the festivities, the birthday cakes have been ordered, we’re very close to our fundraising goal and Team Rudy is ready to walk!
And we’re not the only ones…we had the fun opportunity yesterday of meeting the Westmont Warriors baseball team. This group of impressive young men has formed a Heart Walk team of its own and we thought introducing Rudy to the team would help put a local “face to the cause”. It was such a neat time and the “big baseball guys” were very sweet to our little warrior.
It just so happens that Rudy has been doing a little preparation of his own…check out the workout he’s been getting at therapy the last several weeks!
After a little practice…
Although Rudy doesn’t have quite enough core strength to walk on his own yet, he sure is motivated to walk circles around the MTU (Medical Therapy Unit) with a little support! He is definitely on his way to walking the 5K Heart Walk…maybe next year! 🙂
In addition to walking, Rudy has been doing a little singing with his sister…
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! 🙂
Our sweet girl was born 10 years ago this very hour and we’ve had a fun weekend celebrating her…it started yesterday at her very first soccer game which included her very first goal (so fun), Grandma Jo flew in from Kansas a little later to surprise Olivia for her birthday ( & will stay for a nice, two week visit), and today was filled with all of Livy’s choices…lunch at Freebirds, swimming with brothers in the afternoon, geocaching with Dad at Lake Los Carneros and, finally, an ice cream dessert at Coldstone this evening! Birthdays have always been pretty special days in our household but, I must say, the birthdays of ALL the kids are even sweeter to this Mama’s heart since Rudy came along and put life into even greater perspective for us. Happy Double-Digits Big Girl…you are a true gift to us all!
‘Just a quick recap of Rudy’s appointment with Dr. Harake today…
There is no official word yet regarding decannulation. Dr. Harake hoped to talk with Rudy’s surgeon, Dr. Brian, later today.
Regarding Rudy’s heart, Dr. Harake heard an irregular heartbeat so after the routine monthly echocardiogram, he ordered an EKG or ECG (of which, btw, Rudy IS NOT a big fan). The irregular heartbeat was detected on the EKG printout but it only measured a few seconds of activity so Dr. Harake has ordered a Holter monitor test to monitor Rudy’s heart for 24 hours to determine whether or not the irregular heartbeat is a hiccup that is putting Rudy at risk as this point. The Holter monitor test is scheduled for September 20th and once Rudy is hooked up to the portable monitor, he can go about his business at school and home while being tested. Our next regular appointment with Dr. Harake is scheduled for Oct. 12th. We’ll keep you posted…
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!