Archive for October, 2013

Halloween 2013

October 31, 2013

As is typical this time of year, we’ve had a full schedule the past two weeks since we brought Rudy home from UCLA so I apologize for not updating on Rudy’s post op status.  He is healing nicely and seems to be adjusting well to the closure of his “extra airway”.  His new found ability to hold his breath and all the new sensations associated with the closure are curious to him, I think, be he hasn’t skipped a beat.  We have a post-op appt with his ENT at UCLA on Monday.  I’m preparing myself for the fact that it might be our last appt. with Dr. Shapiro for awhile…kinda strange!  🙂  Unfortunately, Rudy has struggled a bit this week with low O2 sats, fever and lethargy.  It has been concerning but I’m hoping it’s just a bug that will pass quickly.  Rudy hasn’t let it take away from today’s Halloween fun though!  Rolf and Olivia (and Max too) worked hard on Rudy’s TOTALLY AWESOME costume so you’ll need to scroll down to see their finished product!  🙂

The only disappointing thing about this year's annual visit to the Lane Farms Pumpkin Patch was that Maxo couldn't join us.

The only disappointing thing about this year’s visit to the Lane Farms Pumpkin Patch was that Maxo couldn’t join us due to hockey practice. 😦

Hayrides ROCK!

Hayrides ROCK!…

...So do tractors!!!

…so do tractors!!!

Rudy's big enough to go solo ;)

Rudy’s big enough to go solo 😉

Max and his buddies enjoyed their first High School Homecoming!

Max and his buddies enjoyed their first High School Homecoming on Saturday!

Stylish couple! (Just friends!)

Stylish couple! (Just friends!)

Rudy's first t-ball game with the UCSB Gauchos!

Rudy played his first t-ball game on Sunday with the UCSB Gauchos!

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Halloween fun at school!

Halloween fun at school today! (pictured with Picasso Pumpkin II)

Rudy and his classmates got to trick-or-treat through the school district (GUSD) offices for lots of special treats!

Rudy and his classmates got to trick-or-treat through the school district (GUSD) offices for lots of special treats!

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Livy's traditional "hat and mask" parade at school was, once again, super fun!

Livy’s traditional “hat and mask” parade at school was, once again, super fun!

Ahhhhhh, myssssterious!

Ahhhhhh, myssssterious!

All this fun led to tonight’s BIG NIGHT…

Race car driver Rudy and his pit crew!!!

Race car driver Rudy and his pit crew!!!

Olivia the spider!

Olivia the spider!

Quote of the day by Rudy..."Dad, cool car!" ;)

Quote of the day by Rudy…”Dad, cool car!” 😉

‘Hope you all had a fun Halloween too…lots of treats with a minimal amount of tricks!!  Happy Day!

 

 

Home Safe and Sound!

October 16, 2013
Rudy was all smiles headed into surgery...he didn't need me and went willingly with the team of blue suits who transported him to the OR. :)

Rudy was all smiles headed into surgery yesterday…he didn’t need me and went willingly with the team of blue suits who transported him to the OR. 🙂

Rudy ended the day on a "super happy" note facetiming with Daddy and the big sibs!

Rudy ended the day on a “super happy” note facetiming with Daddy and the big sibs!

One of the big perks of being at the Mattel Children's Hospital is the never ending supply of Hot Wheels!  :)

One of the big perks of being at the Mattel Children’s Hospital is the never ending supply of Hot Wheels! 🙂

Rudy's favorite?  The green one!

…which came in handy as we waited for the detailed discharge process!

Once again the 405 was bumper to bumper when we headed for home so we took the much more desirable Malibu detour!!!

Once again the 405 was bumper to bumper when we headed for home so we took the longer but much more desirable Malibu detour!!!

Home or Bust!!

Home or Bust!!

Rudy and I made it home from L.A. just in time to say “hi” to Rolf and the big boys as they headed out to their various evening commitments,  Livy made Kraft macaroni and cheese for the two of us for dinner…YUMMY!!!!, and now it’s time to get some sleep!  ‘Just wanted to say “thank you” before this day comes to a close.  Rudy is tolerating the stoma closure beautifully and it’s nice to be home…we’ll keep him home the next few days and follow up with Dr. Shapiro in two weeks.  Thank you for your prayers.  Nighty Night!

 

 

 

 

Sleep Tight

October 15, 2013

Rudy did great today! He was out of the OR by 9:30am but we had to hang out in the PACU most of the day waiting for a bed to open up in the PICU. Nurse Joseph treated us right with a big selection of movies and even scored me a coveted comfy chair while we waited. We finally got settled in the PICU at 4:30pm. I thought for sure Rudy would fall asleep once we got settled but it’s 7pm and he’s still sitting up happily greeting everyone who walks in the room…Mama is tired (up since 3am) so he may be on the nurse’s watch here soon if I fall asleep before he does! Ha ha ha. So grateful for the good care he’s getting once again in this familiar unit and so grateful for a successful procedure all around. Thanks for your prayers! Sent from my iPhone

Stoma Closure Day

October 15, 2013

Rudy was a happy little monkey for our 4am departure from Goleta and our 6am arrival to UCLA…Rudy’s attempt at “thumbs up” on Valium right before he left for the OR! All is on schedule so far today…thanks for your prayers!

IEP 2013

October 14, 2013

After a string of some pretty fantastic celebrations (the Heart Walk, Rudy’s 5th Birthday, the Rescue Mission’s big annual fundraising event, La Patera Fall Carnival),  last week was filled with some pretty important fall “to dos” in Rudy’s annual calendar including his IEP (Individual Education Plan) meeting.  My first impression when I walked into the room of teachers and specialists was “Wow!  Small crowd!”.  Ha  Rudy’s last two annual IEP’s involved both the county AND district personnel and the room had easily 18+ people in attendance…now that Rudy is solely at GUSD, we had a more intimate discussion with 8 including his classroom teachers, his classroom nurse, the district nurse, speech therapist, adaptive PE teacher and psychologist.  As always, there was much to discuss as we reviewed last year’s goals and heard the proposed goals for next year.  We are encouraged by the progress Rudy has made and as much as we value all that the county program offered Rudy, it’s so nice to have him closer to home and settling into his own neighborhood school district.  And, once again, Rolf and I walked away humbled by the number of quality individuals investing in Rudy’s education so significantly.  We are so grateful!  There wasn’t any talk of adding time at La Patera Elementary as part of a “blended schedule” for Rudy but this is still on the table and details for that arrangement will be ironed out in the coming weeks…which is fine because our focus is now on getting Rudy past this week’s surgery.

 

Rudy has his stoma closure surgery tomorrow.  ULCA just called and Rudy’s procedure is scheduled for 7:30am which means we have to report to registration at 5:30am (which means we’ll be leaving SB at 4am – FUN).  It’s a minor surgery for Rudy but because Dr. Nina and her fellows/residents need to cut around the stoma, remove scar tissue and then stitch him up from the inside out, it’ll be a minimum of 2 hours in the OR and will require an overnight (possibly 2 nights) for observation.  I’m praying he tolerates it all well, of course, and is protected from infection as he heals.  It’s been so long since he’s had a surgery involving an incision that I kind of forgot about all the pre-op stuff we’ve had to do this past week (blood draws, DCing aspirin for 10 days before surgery, dr. appts, etc) and all the post-op wound care we’ll have to be on top off to keep him infection-free.  I LOVE that it’s been long enough to forget details like that but I don’t like that  it has made for a mad scramble this past week!!  Ha Ha  Thank you for your prayers!  I’ll post an update after tomorrow’s procedure.  Thank you – thank you!

Olivia supervises the "Back to the Bayou" set up.

Olivia supervised the “Surf’s Up at the Bayou” set up in style! 10-5-13

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Another gorgeous day at Dos Pueblos Ranch!

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Rudy was all smiles at the La Patera Elementary School Fall Carnival!!!

Rudy was all smiles at the La Patera Elementary School Fall Carnival!!! 10-10-13

Prize organizer?

Prize organizer?

Wilson and Max rockin' the prize booth at their alma mater!

Wilson and Max rockin’ the prize booth at their alma mater!

The Big 5!!!!!

October 1, 2013

Today is Rudy’s 5th Birthday!  It is a bit mind-boggling to think about all the prayers and hopes, close calls and comebacks, all the tears of heartache and tears of joy, the disappointments and the celebrations, all the experiences and special family memories we’ve packed into these first 5 years of Rudy’s journey so far!  Our family watched old Rudy’s Beat video clips on the Apple TV during dinner tonight as part of out celebration and it’s not only amazing to see how far Rudy has come but it’s also startling to see how much the big sibs have grown and matured!  Oh my, they were all so young when Rudy joined us and now they are all so independent and articulate and, well, big!!

Each birthday Rudy has is a big deal but the milestone of him turning 5 seems particularly significant this year!  We got so good over the years at taking life one day at a time that we really didn’t dare look too far into the future.  And, now, here we are!!  October 1, 2013!!!  I wish I could say the day Rudy was born feels like it was just yesterday…but it doesn’t.  🙂  It has been a long marathon to get to this milestone birthday and, on some levels, the hard work is just beginning but as I watched Rudy at school today with a huge smile on his face and pointing to himself when his teachers and classmates sang “Happy Birthday” to him, I was overcome with gratitude for every step of this marathon…because every step whether crippled or strong has twisted and turned a path to today…and today was pretty sweet!

A big thank you to all who sent texts, FB messages, phone messages, cards and little gifts!  He has been well-celebrated!  Rudy’s life is full and rich and can be defined by the love that he gives and receives!  We couldn’t ask for much more for any of our kids.  Happy Birthday Super Rudy…our HLHS Warrior…goofy kid brother…inspiration…joy!  You are 5!  Woo Hoo!

Rudy's Birthday Buddy!  Nurse Dodi is also celebrating a milestone bday...just 60 years between the two besties!  Happy Birthday Dodi!

Rudy’s Birthday Buddy! Nurse Dodi is also celebrating a milestone bday…just 60 years between the two besties! Happy Birthday Dodi!

We all enjoyed a quick visit from Uncle Steve and Aunt Michelle on Rudy's Birthday Eve!!!

We all enjoyed a quick visit from Uncle Steve and Aunt Michelle on Rudy’s Birthday Eve!!!

 

Rudy got crowned during circle time at school today.

Rudy got crowned during circle time at school today.

He shared popcorn and party favors with is classmates...so fun!

He shared popcorn and party favors with his classmates…so fun!

Rudy admiring his surprise birthday greeting!  Thanks Lyn and Brooke :)

Rudy admiring his surprise birthday greeting! Thanks Lyn and Brooke 🙂

Ice cream for dessert was Rudy's special bday outing...yum!

Ice cream for dessert was Rudy’s special bday outing…yum!

Rudy had fun opening his own presents with Olivia's help

Rudy had fun opening his own presents with Olivia’s help.

Olivia gave Rudy one of her signature cards!  Awesome!

Olivia gave Rudy one of her signature cards! Awesome!

And the boys gave Rudy a video greeting…Totes Presh!

Now it’s on to October 15th…Stoma Closure Day!!!!