Archive for August, 2013

Measurable Progress

August 29, 2013

Wilson captured a MAJOR milestone in Rudy’s development on video this afternoon…CRAWLING!  I remember being “wowed” when the big sibs all learned to crawl as babies but I still took it for granted…it’s something Rudy has been working on in physical therapy for years!!!  He doesn’t quite have the strength to hold his head up yet but he definitely has the concept down. Check him out…

In addition to crawling, Rudy has mastered pulling himself up to the standing position and cruising along the couch or around our bed…he is busy with a capital “B” and we’re all spending a good bit of our day cleaning up after the tornado that is Rudy when he is  let loose to explore from this new vantage point!  Both crawling and cruising are significant in the process of learning how to walk unsupported and at the rate he’s going right now, I have a good feeling it won’t be long before he takes those first independent steps!!!  Go, Rudy, Go!!!

Rudy has also shown great improvement in his speech.  He’s highly motivated by music and LOVES to sing which certainly helps promote speech!  He’s got a pretty high pop/rock music IQ for a 4 year old thanks to the big sibs…Max has posted a series of fun music videos they’ve made together on Facebook…

A little Taylor Swift (reposted):

A little Bruno Mars:

“Click Here”

A little Justin Bieber:

We’ve even caught him at the computer singing along with Adele (and, of course, Mama’s got him singing classic Amy Grant!).  Let the music blast and the progress be measured in whatever means possible!  We take great delight in each and every step forward!!!

‘Just thought you might enjoy seeing some answers to your prayers!  🙂  Miracles do happen…and are often packaged in wonderfully simple ways!!!  🙂

Rudy’s First Day…

August 27, 2013
Rudy and Nurse Sarah settling in at the start of a GREAT first day!!!

Rudy and Nurse Sarah settling in at the start of a GREAT first day!!!

It's no surprise that the trikes were a big hit...as were music time and crafts and etc, etc, etc... :) Ha Ha

It’s no surprise that the trikes were a big hit…as were the crafts and music time and his new teachers and etc, etc, etc… 🙂 Ha Ha

The mark of a good day...asleep in the two minutes it takes to get home!

The mark of a good day…fast asleep in the two minutes it takes to get home!

Rudy sure enjoyed his first day in his new class at the Learning Tree…he enthusiastically participated in all the activities and was content when I showed up to pick him up.  Teachers Diane and Brenda from the Bear Club arrived to help facilitate a smooth transition so it was a real treat to see them.  Rudy has been so blessed with such wonderfully gifted and caring teachers and nurses both at the county and now in GUSD!  We are incredibly grateful and, once again, humbled by the logistical details, behind the scenes personnel and classroom staff if takes to education our son!  Excited for a special year ahead…stay tuned!

 

 

Bye, Bye Summer 2013

August 26, 2013

It’s official…sadly, summer is over but the big sibs were all smiles when they headed off to school this morning and, even more importantly, were all smiles when they came home this afternoon.  Rudy and I visited his classroom today and we really enjoyed meeting his new teachers and school nurse.  He will start his first day bright and early tomorrow morning and because he’s back in Goleta, he won’t have a long bus ride anymore…he’ll be just a couple of minutes away from home!  Yay!  His annual IEP meeting won’t be until late September so any decision to pursue a blended schedule that would include time at La Patera (our neighborhood school) won’t be considered until then.  We’ll have to wait and see.  🙂

 

Our last two weeks of summer were filled with a number of doctor appts and lots of “to do’s” but we managed to squeeze in a little last minute fun too…

Nurse Dodi stayed home with Rudy one day so the big sibs and I could go to the beach...Wilson had a rare day free of marching band camp and joined us!  So fun!!

Nurse Dodi stayed home with Rudy one day so the big sibs and I could go to the beach…Wilson had a day free of marching band camp and joined us! So fun!!

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Rudy's last visit to CCS with the big sibs (sans Wilson)...along with school comes a new therapy schedule for Rudy...it'll be a bit of an adjustment for him.

Rudy’s last visit to CCS with the big sibs (sans Wilson)…along with school comes a new therapy schedule for Rudy…it’ll be a bit of an adjustment for him.

It's official...we now have TWO student i.d. carrying high schoolers!  How is it possible that Max is in high school?

It’s official…we now have TWO student i.d. carrying high schoolers! How is it possible that Max is in high school?

Olivia's "summer o' concerts" included an early bday present to see Taylor Swift!  It was AWESOME...of course, I had the most fun watching Olivia watch Tay Tay!  ;)

Olivia’s “summer o’ concerts” included an early bday present to see Taylor Swift! It was AWESOME…of course, I had the most fun watching Olivia watch Tay Tay! 😉

 

Our appts with the endocrinologist, neurologist and cardiologist were all pretty routine.  Rudy’s relatively new endocrinologist announced she is leaving the area so our appt with her was our last.  I’m sad because I really like her but a new endocrinologist has already been hired to take Dr. C-V’s place and will be settled before Rudy’s next scheduled appt so he won’t skip a beat in his thyroid care.

Bye, Bye to Dr. Candido-Vitto...we will miss her a great deal but wish her and her family well!

Bye, Bye to Dr. Candido-Vitto…we will miss her a great deal but wish her and her family well!

You may recall that after Rudy’s febrile seizure episode in late June, we weaned him off Trileptal and started him on Depakene.  Well, the Depakene gave him serious diarrhea.  I thought maybe that would subside once Rudy’s body adjusted to it but we battled it for several weeks with no improvement so Rudy’s neurologist has switched him to phenobarbital.  I have to admit that the switch to phenobarbital is concerning to me and Rolf as our only reference to the drug is “One Flew Over The Cuckoo’s Nest” but the pharmacist assured us it’s a pretty commonly prescribed barbiturate.  We’re keeping a close eye on him as it, too, can have undesirable side effects including irritability, lethargy and behavioral changes but it’s really the only other option to treat febrile seizures so I’m praying his body responds well to it.  He just started it this week.

Lastly, our visit with the cardiologist showed little to no change in Rudy’s heart function…no better, no worse.  There is no plan to schedule a heart cath this fall but Dr. Harake would like us to touch base with Dr. Alejos at UCLA to discuss the heart transplant a bit more.  Our consult with the heart clinic in May was supposed to include him but he was out of town at the time.  Dr. Harake feels it would be helpful to talk with him directly as Dr. Alejos is the one with whom Dr. Harake has been communicating so we’ll seek to make that connection sometime soon.  I was able to make appointments with the UCLA dentistry department AND Rudy’s ENT on the same day (yay!) so our next trip to UCLA will be on September 23rd.

So, maybe we’ll have a quiet school year (knock on wood!)…regardless of what is to come, I’m so grateful everyone got off to a good start today…

Sending Wilson off extra early for zero period!

Sending Wilson off extra early for zero period!

11th grader

11th grader!

9th grader!

9th grader!

6th grader!

6th grader!

While dropping Livy off, we had to stop at the K yard to wish gal pal Stella a great first day!!!  How cute are they!

While dropping Livy off, we had to stop at the K yard to wish gal pal Stella a great first day!!! How cute are they!

Rudy and I went back to have lunch with Olivia and he ended up making the rounds on the play yard with a posse of his buddies...precious!

Rudy and I went back to have lunch with Olivia and he ended up making the rounds on the play yard with a posse of his buddies…precious!

Happy School Year Everybody!!!

 

 

 

 

 

 

 

 

 

 

Strange Things

August 13, 2013

I had the strangest experience yesterday on the drive down to UCLA for Rudy’s appt with pulmonology.  As I made the turn off Sunset Blvd onto Veteran, I noticed the house on the corner was completely vacated and workers were busily painting and doing some home improvements.  Now, I don’t know if the house sold or if the current occupants simply moved out for a home renovation project but as I passed the empty house, my heart was heavy and I was totally caught off guard with a bit of grief.  Isn’t that strange?  I have become well acquainted with that drive to UCLA…getting off the crazy 405 fwy into Brentwood and onto the Westwood campus.  During Rudy’s initial 7 month hospital stay, that neighborhood became a bit of an escape for me…driving in I’d get excited knowing I was close to getting back to Rudy and driving out I’d stare at the beautiful homes with manicured yards while stopped at the stoplights just wanting to soak in all the normalcy the neighborhood represented.  The vacant house I saw yesterday was one I enjoyed in particular…it was always lit up and felt warm & inviting.  As the seasons passed, I enjoyed all their decorations during the holidays and loved their garden blooms in the spring.  I never met the people who lived there but I sure was sad yesterday thinking that they may have moved away!  Again, isn’t that strange?  Sometimes I think I must be going crazy…but, then again, I suppose it’s a wonderful reminder that there are so many choices we make in life (both in what we do and how we behave) that comfort and refresh the world around us…without us even knowing it!

 

There’s nothing new to report after our check-in with Dr. Woo.  Rudy’s lungs sound good and she would like us to continue with his current care for pulmonary hypertension at home.  She’s on board for the heart transplant and seems to be in good communication with cardiology.  The heart transplant folks and Dr. Woo have made it clear that for transplant purposes, Rudy’s oral health needs to become a priority.  I’ve actually looked into this in the past and it has been tricky to find a local dentist willing to treat Rudy with his complicated needs.  I have a referral to take Rudy back to UCLA for a dentist appt.  I suppose it’ll be helpful in the long run to have his oral health assessed “in house”  as it relates to a heart transplant but I’m still hoping to find a dentist closer to home for his general dentistry needs.  I’ve procrastinated a bit on this and now it’s time to get serious…I’ve procrastinated on getting me and the big kids to the dentist this year too so it seems to be a consistent issue for me.  😉  Next up will be visits with the Endocrinologist, Cardiologist and Neurologist…and calls today to set up Rudy’s ENT and Dentist appts (both at UCLA so I’m praying I can stack them on the same day).  SO grateful for Rudy’s team of medical professionals!  Thank you for your continued prayers for healing and good general health as we prepare for cold and flu season.

 

I was glad Livy was around to help occupy Rudy as we had a TWO HOUR delay getting in to see the doctor yesterday!!!

I was glad Livy was around to help occupy Rudy as we had a TWO HOUR delay getting in to see the doctor yesterday!!!

The day ended on a good note, however, with Olivia getting to meet one of her all time favorites...Lakey Peterson!!!

The day ended on a good note, however, with Olivia getting to meet one of her all time favorites…Lakey Peterson!!!

Some of you may be wondering "Who is Lakey Peterson?"...she a SB local, world class surfer AND granddaughter of Herb Peterson - inventor of the egg mcmuffin!!!!  Ha Ha  Seriously, she's a sweet girl and it was super fun for the kids to finally meet her.  :)

Some of you may be wondering “Who is Lakey Peterson?”…she a SB local, world class surfer AND granddaughter of Herb Peterson – inventor of the McDonald’s egg mcmuffin!!!! Ha Ha Seriously, she’s a sweet girl and it was super fun for the kids to finally meet her. 🙂

 

 

 

 

Quality Time

August 10, 2013

I don’t know if it’s because I’m getting older or if it’s because of Rudy but I’m convinced that life really should be ALL about “quality time”.  It doesn’t have to be extravagant or exciting or even out of the ordinary but about the people you’re with and making the most of today…whether today is filled with work or play.  Rudy is certainly helping us hone in on this and more times than not simple becomes the most memorable!  Our summer has been full of simple, quality time and as always, I’m sad to see summer end.  Rolf and the big kids got to spend some time with extended family in Boston…our days at home have been filled with lots of swimming, lemonade & avocado stands, visits from old friends and LOTS of movie nights…the summer took a bit of a detour with Rolf’s torn tendon and surgery but we’ve tried to make the most of that too – extra time with Dad!  So the challenge will be to keep the focus on “quality” as Wilson heads back to school on Monday for marching band camp, Rudy begins a string of doctor appts starting with a trip to UCLA on Monday as well and as we squeeze in a trip to Ventura to shop for school…the hustle and bustle of the fall schedule is starting to emerge!

We were blessed to get away last week for some final summer fun which was a highlight for me!  We enjoyed a drive down to San Diego that included time with Rudy’s godparents, a reunion with dear old friends from our season in San Diego and a trip to Legoland as part of Rudy’s Wish Trip!!!  All quality time indeed!!!  We cut our trip short by a couple of days because Rolf reached his comfort limit but we packed in enough fun to fill a whole week for sure!  Can’t resist posting pics…

We stayed with our friends who live at Indian Hills Camp...the big sibs made sure Rudy got a turn on the giant slide!

We stayed with our friends who live at Indian Hills Camp…the big sibs made sure Rudy got a turn on the giant slide!

Summer 2013...Indian Hills Camp in Jamul, CA.

Summer 2013…Indian Hills Camp in Jamul, CA.

Rudy with his godfather, Marlin.

Rudy with his godfather, Marlin.

Gettin' some godmama love from Gracie...

Gettin’ some godmama love from Gracie…

A special reunion with dear old friends...(Jerry, Marlin, Curt and Gary)  Did anyone get a good pic of us gals?

A special reunion with dear old friends…(Jerry, Marlin, Curt and Gary with Rolf)

...and Annie, Robbie, Pat, Allison & Gracie

…and Annie, Robbie, Pat, Allison & Gracie

 

 

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It was fun to visit the Midway Aircraft Carrier while in San Diego...Rudy liked the "big boat".

It was fun to visit the aircraft carrier Midway while in San Diego…Rudy liked the “big boat”.

Rudy's salute.

Rudy’s salute.

A trip to San Diego wouldn't be complete without a stop at El Indio...we made it there twice!

A trip to San Diego wouldn’t be complete without a stop at El Indio…we made it there twice!

If it's possible to have too much El Indio, this is what it looks like!

If it’s possible to have too much El Indio, this is what it looks like!

Rudy has room for more!  Yum, Yum!!

Rudy has room for more! Yum, Yum!!

Rudy's favorite ride at Belmont Park on Mission Beach!  He road the boat 7 times!!!

Rudy’s favorite ride at Belmont Park on Mission Beach! He rode the boat 7 times!!!

Livy and CeCe sporting new sunglasses!

Livy and CeCe sporting new sunglasses!

Rudy and Grace at the Giant Dipper!

Rudy and Grace at the Giant Dipper!

View of Mission Beach from the Giant Dipper!

View of Mission Beach from the Giant Dipper!

We spent the next day at Legoland!

We spent the next day at Legoland!

Fun for all...

Fun for all…

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The giant X-wing made out of legos was a highlight!

The giant X-wing made out of 5 million legos was a highlight!

Rudy even tried his hand at a carnival game...

Rudy even tried his hand at a carnival game…

...and won a bear!!!

…and won a bear!!!

Rudy was fascinated by the fish in the aquarium!

Rudy was fascinated by the fish in the aquarium!

Daddy and Rudy were scooter buddies for the day.

Daddy and Rudy were scooter buddies for the day.

The fun continued at camp with the Vans!  Nothin' says "summer fun" like a slip 'n slide!  (with CeCe and Luke)

The fun continued at camp with the Vans! Nothin’ says “summer fun” like a slip ‘n slide! (with CeCe and Luke)

Uh, not quite sure what the caption should be on this one!

Uh, not quite sure what the caption should be on this one!

Or this one!

Or this one!

Rudy had fun watching all the crazies!

Rudy had fun watching all the crazies with Grace!

Campfire with Luke and lil' James

Campfire with Luke and lil’ James

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One last run on the BMX course...for Olivia

One last run on the BMX course…for Olivia

...and Max

…and Max

...and Rudy!  Thanks to Max and Luke!

…and Rudy! Thanks to Max and Luke!

"Again...again."

“Again…again.”

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As if that wasn’t enough excitement for one trip…Livy and I topped it all off with a stop in L.A. at the Staples Center on our way home to see One Direction (thanks to Rudy’s nurse Eileen!!!!! – THANKS Eileen)

Livy's first BIG concert with friend Amy!  Woo Hoo!!

Livy’s first BIG concert with friend Amy! Woo Hoo!!

Dreamy!

Dreamy!

Our life is rich because of the love of family and friends that surrounds us.  Thank you for adding to the quality of life we’re experiencing with Rudy through your continued prayers!  Ever grateful….