Yesterday’s Heart Walk was another special memory maker. A fun group of friends gathered at Fess Parker’s resort to walk with us, the “Team Rudy” tent had a great view of the ocean and the weather couldn’t have been more gorgeous. All were happy and had a fun time except, of course, the birthday boy!! Last year, Rudy slept through the whole thing. This year, Rudy was set off by the cheering crowds at the start of the walk and didn’t really settle down at all until we finally got him to the tent (after about 2 1/2 miles), stripped him down to his diaper and laid him flat on a comfy blanket on the grass. Leave it to mom to plan a birthday celebration in the midst of 700 enthusiastic Heart Walk participants for a little half-heart who doesn’t like crowds! Ha Ha Oh well, after a quick nap, Rudy woke up happy and enjoyed the quieter celebration with friends who lingered awhile after the walk.
Thanks to so many of you, Team Rudy was ranked the #1 “Mom’s with Heart” fundraising team with a total of $10,486.00! Amazing!! Thank you all for your donations and prayers. Now it’s time to start another week that includes our first appointment with Dr. Woo (Rudy’s new pulmonologist) at UCLA bright and early tomorrow morning and the start of preschool on Tuesday! ‘Lots coming up…stay tuned 🙂
P.S. Thanks, Greg, for capturing the day in your trademark great pics!
It’s Friday night and we’re all getting ready to hit the hay a little early but many have asked if Rudy got to go to school on Thursday so I wanted to post a quick update. Although Rudy sounds and looks much better today, he was still quite junky yesterday and so we had to keep him home from school again. He took advantage of another day off and had a nice, long nap. I imagine we’ll have a green light to go on Tuesday so stay tuned… 🙂
Rudy went with me to church this morning to help me prep for Sunday’s worship…Wilson better watch out, it looks like Rudy may want his gig:
We hope to be up and out of here early tomorrow morning to set up our “Team Rudy” tent along the Heart Walk route. We’re all looking forward to a special day tomorrow. We’ll be sure to post a fun recap of the Heart Walk asap. Happy walking friends!
Well, after months of preparation, the Heart Walk is just 3 days away and we’re all “a buzz” around here with final preparation details. It’s cold and unseasonably rainy in Santa Barbara today but the forecast for Saturday is clear skies, sunshine and mild temps! It should be a gorgeous day. So, for those of you who planned to donate and haven’t yet, now is the time to go online to make that donation (www.sbheartwalk.com). Once again, we’re blown away by your response. Our goal was to hit 10,000 and we’re very close. The total for Team Rudy as of today is $8, 961.00!!! Amazing!!! Thank you, thank you!!
For those of you who are planning to come to the walk, please shoot to arrive at the Fess Parker Doubletree Resort by 9:00am. We’ll set up a “Team Rudy” tent in the grassy area across the street from the Fess Parker rotunda and we’ll meet there at 9:30am to distribute “Team Rudy Balloons” so we can walk to the starting line together. The 5K walk starts at 10am. We will meet back at the tent after the walk at 11:30am to have cake and a little birthday celebration for Rudy so please feel free to come and enjoy the celebration even if you don’t plan to walk. Come dressed in “Rudy Blue” and ready to have some healthy fun!
I wish you all could join us…but know you’ll all be with us in spirit! There will be many on our hearts on Saturday including the dear heart friends we’ve lost since Rudy was born…we’ll walk not only in honor of Rudy but also in dear memory of friends including Katie Manning, Baby Angel, Logan Elliott, Josiah Wilson, Ethan Skidmore and Jadrian Glick. These little lives that impacted us deeply are not forgotten and remain a constant inspiration in our journey with Rudy.
So sorry to get you all excited about Rudy’s first day of school…he ended up not going today due to a bug he’s been fighting for several days. We thought maybe he’d conquer it by today but after a couple of days with a rash and runny nose, it finally hit his lungs and he’s a chunky monkey today. Poor boy. We were all amped up last night (Olivia even picked out a special outfit for him to wear to school) so it’s a bit of a let down but we’ll try again on Thursday. We’re starting out slow…just two days a week and he’ll eventually work his way up to 4 days a week. The plan is for me to go with him initially until the staff is trained and feels comfortable with his care and an extra aide is hired. Eventually he’ll ride the bus to school (which will be wonderful – the school is a bit far) but for now I’ll need to drive him as there are a number of safety precautions that need to be worked out before the district will transport him. It’s all in process still but it’s certainly okay to take it slow.
So, sit tight…the “first day of school” post is coming! Ha Ha Thanks for all the sweet messages wishing Rudy luck and a fun start to school. He’s going to really love it, I think. ‘Praying for clear lungs by Thursday. 🙂
In the meantime, we’ll continue to get his “school supplies” ready…
Rudy’s Birthday week includes dueling highlights. You already know about the actual birthday happenings and you’ve probably also caught wind of the Heart Walk celebration coming up this weekend. But wait, there’s more—tomorrow (Tuesday), Rudy will go to SCHOOL!
Life with HLHS has taught us to embrace the moment. There are so many unknowns on this journey that we’ve learned to live life with less of a future orientation than normal. That means that milestones like this can sneak up on us.
I didn’t think we needed to be reminded of how big a deal Rudy starting school is, but we got a vivid enough reminder of this last week as his IEP meeting. (In case your wondering, “IEP” stands for “Individualized Education Plan” and it’s what therapists, educators and medical professionals set up for special needs clients—each one of whom is unique.) Until now, the IFSP (Individualized Family Service Plan) sessions we’ve had have taken place around our dining table and all of the faces were the familiar and dedicated team from Tri-Counties Regional Center and NurseCore.
While Trish was more aware of what was coming, I had missed the detail that this IEP meeting was going to be at the Goleta School District headquarters, but shortly after arriving it was clear that a group this size wouldn’t have fit around our table. So it may take a village to raise a child, but it takes a coordinated multi-jurisdictional agency effort to educate Rudy! I think I counted 18 people—all there to discuss Rudy and what services he needed.
Let’s see if I can remember all of the agencies:
Tri-Counties Regional Center (gave their final report as Rudy graduated their program by turning three)
California Children’s Services (Rudy’s current PT/OT provider)
Goleta Union School District (our home district came and assessed Rudy)
Santa Barbara School District (where GUSD referred Rudy as he is non-ambulatory)
SB County Education Office (who oversees inter-district stuff and provides Special Ed support)
Over the two hours we were together: therapists and teachers shared their assessments and articulated goals; nurses clarified medical issues so insure safety and support in the classroom and on the bus; and specific equipment and schedule needs were identified so that solutions can be devised. Not every question was answered (and we probably didn’t know all the right ones to ask), but so much of the game here is to try things and see what can be worked out.
The reassuring thing is that so many very competent and dedicated people have their attention focused on Rudy. I’m not sure I’ll ever get used to that awkwardgratefulhumble feeling that comes when I see so many people going to such lengths for my child. To the nurses that never slumber, the skilled doctors who keep searching for ways to help him, and the friends that pray and continue to help in countless ways I now add this new team of dedicated people who are investing so deeply in Rudy’s development.
Stay tuned for the “first day of school” post coming tomorrow…
For our records, here are the results of Rudy’s final assessment at 36 months from Regional Center:
Fine Motor and Perceptual Skills – Approximate Age Equivalent (AAE): 12 months
I tried real hard to post “Part 2” of Rudy’s birthday last night before bed but, alas, I wasn’t successful! I kept falling asleep as I waited for photos to download! Ha Ha A full day it was but we managed to squeeze in some celebrating of Rudy along the way and he certainly felt the love from family and friends both near and far! For ten years, the Rescue Mission has held it’s annual Bayou benefit out at Dos Pueblos Ranch. It’s always a memorable event, but it was especially so three years ago when Rudy arrived early. As surreal as it might have felt to leave our newborn in the ICU at UCLA it was comforting to be among so many friends that have only become more dear to us through this journey. So to have the event fall on Rudy’s birthday this time around made for a very special day. Despite his apprehensions about crowds, Rudy did have fun going out to the Ranch to supervise the preparations.