So, the bad news is Rudy’s feeding pump broke on Thursday night and crApria can’t get us a replacement until Monday.  It’s not a danger for Rudy but it does mean that Rolf and I have to strategically alternate feeding Rudy manually via the g-tube a couple of times throughout the night…a bit reminiscent of nights with a newborn again.  Ha Ha   Rudy doesn’t know the difference and sleeps through it all anyway…Rolf and I, on the other hand, are a bit blurry-eyed.  After the alarm sounded at 3:00am last night (or should I say “this morning”), I couldn’t go back to sleep!!!  BUT, there is a flipside…the good news is because Rudy didn’t have to be all hooked up to the pump last night, he was free to join the big kids in their weekly Friday night movie/slumber party!  Olivia and Max excitedly set up the necessary blankets, comforters and pillows and proudly propped Rudy up between them.  By 3am, Rudy managed to make his way to the foot of their set up on the floor but slept soundly all night long.  Even Wilson decided to stay on the couch all night (he’s old enough now to prefer sleeping in his own bed and usually wanders off to bed when the younger ones fall asleep).  Rudy woke up at 6am pretty giddy to find himself surrounded by sleeping sibs and systematically woke them all up by kicking on the cabinet under the T.V.  Sooooooo fun!

I don’t know though…with school and sibling slumber parties, Rudy is getting a little big for his britches and typical toddler behavior is setting in!  Today during his bath he said a very articulate “NO” to just about everything I tried to wash!  Ha Ha   And so it begins…

Today was Rudy’s first day riding the school bus to school!  Because of Rudy’s need for supplemental oxygen, it is required by the district that he be accompanied by a LVN so the plan will eventually involve a LVN coming to our house, riding with Rudy to school on the bus, staying with him during his class time and then riding back home with him on the bus.  That will be an amazing day but until an LVN is hired and all is in place,  I get to go!   My last ride on a school bus was roughly 30 years ago.  -Ha  I guess a ride on a yellow school bus can be a little mundane but there are two things that are special about Rudy’s bus…1.  It has a cool wheelchair lift AND 2. His bus driver’s name is RUDY!!!  🙂  Rudy is originally from Haiti and very sweet to the three boys who ride this particular route with him…

 

 

 

 

We also managed to squeeze in a cardiology appt. with Dr. Harake this morning before school.  The team of doctors down at UCLA had a chance to discuss Rudy’s 9/22 heart cath results and are all in agreement that our next step should be to schedule another heart cath in 6 months (tentatively scheduled for March 21) to coil the remaining collaterals.  You’ll recall that Drs. Dan and Harake coiled two large collaterals during the 9/22 cath to control Rudy’s blood flow but there is actually a web of collaterals that have developed over time and the team agrees that it will be necessary to go in and coil as many as  possible…once that is done, if Rudy’s O2 sats remain the same, no further intervention will be necessary and we can continue to wait for the lungs to heal.  If his O2 sats drop, then it will be necessary to either put a stent in his Sano Shunt (the shunt placed in his Norwood procedure) to open it up and allow unrestricted blood flow or replace the shunt altogether with a larger shunt.  It sounds like a reasonable plan to us.  Today’s echo (btw, Rudy’s new word for the day is “echo”) showed the same narrowing of the aorta that Dr. Harake saw 2 weeks ago…the angioplasty didn’t open it up enough so a stent may necessary in the aorta as well.  We’ll check in with Dr. Harake again in a month.  In the meantime, he and a number of Rudy’s UCLA doctors are heading to Peru for their annual humanitarian medical trip…we wish them a safe and productive trip and good health for Rudy while their gone.  🙂

Happy Days!

 

Rudy had another full day today…it started out with his OT and PT therapy at the CCS Clinic this morning.  Tuesdays are particularly fun at therapy because we get to say “hi” to our sweet friend Gwendolyn (who gave him the CUTEST birthday present EVER…stay tuned!)  After therapy, we had a quick lunch break at home and then we were off to Rudy’s first day of school.  It was pretty special and nothing captures it more than a few pictures…

 

Rudy lasted all three hours and had a real positive first day.  We’ll go again on Thursday and possibly try 3 days next week.  The County Education Office is still working on hiring an LVN and arranging bus transportation so I’ll continue to accompany Rudy for the time being.

 

I promised Olivia a trip to Lane Farms after school to buy a pumpkin so we ended the day with a quick trip to their pumpkin patch…Rudy wasn’t particularly impressed but he did have a pretty long day. 🙂

 

 

School….pumpkin patch…farm animals…Fall is officially here!  Happy Fall dear friends…

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!

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.

Blessings to you…

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…

 

 

 

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.