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…

11 thoughts on “Summer’s Finale

  1. We planned to make Rudy rolls this summer, but were side tracked with Kourntey’s pray quilt (which turned out super awesome). We’ll make some soon and send them up with Kourts family. Who do we give them to in the PICU?
    Prayers, hugs and kisses to all…. (((Hugs)))

  2. Go Rudy Go! I’m so proud of you and AMAZED at the progress you’ve made since you were here in Kansas this spring! You are doing great!! Keep it up, Rudy! We love you!!

    PS – Tell your brothers and sister I’m proud of them too!

  3. Happy to see Rudy looking so wonderful and happy. But with such a wonderful family it is no wonder. I would like to thank all for the Rudy Rolls. At least two of my NICU patients have returned from PCTICU with them and they are great tools to use in caring for the children. Thanks to all for the hard work. Joyce RN NICU

  4. Hey, big boy! Your first car is a convertible!

    I know Wil, Max and Livy would love to have one their size! All 4 of you will find changes when school begins. Have a great school year.

    I am sooooo proud of all of you.

  5. Love the wheels…so happy that Rudy can be a little mobile with his hot rod too!!! To see Livy doting on him is so precious!! I am praying you, Rolf and Trish in addition to Rudy and his progress because you have the burden of the care and know the challenges of the near future…..Love you guys!!

  6. Bullitt – the prequil!
    —-
    Low-ri-der…
    —-
    “yo dad, when you lettin’ the bro’s pimp/trick out my ride?” ” I want some 9″ rims, NO2 turbocharger, 5″ gps/mp3/video…”
    —-
    “I got the top down, mp3’s pumping YoGabbaGabba… -I’m ready to cruise the park with mom…”

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