Summer Is Here…for ONE of us anyway!

May 11, 2016 by

Mother’s Day weekend was marked by a trip down to LA to pick up Wilson and all of his stuff for the summer!!!  Woo Hoo!  It’s hard to believe that he has a year of college under his belt already but I’m glad the year went by so fast.  ;)  We’re enjoying being together again…especially Rudy who has his roommate back.

Wilson had a good first year at APU…with his trademark enthusiasm, he made a lot of great, new friends, rocked his coursework and excelled in the ROTC program.  Although his scholarship didn’t require a commitment until the end of his sophomore year, Wilson came home at Christmas convinced the military is what he wants to do so he signed his Army service agreement this past winter.  It’s official.  I’m proud as well as a little concerned but very much comforted by his thoughtful process.  He knows (to the extent he can) what he is committing to and he is excited about his future.  He heads to Fort Knox, Kentucky later this summer for a month of training so we are taking full advantage of his being home now.

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Wilson and his official military ID card.

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Rolf and I got an “oh, by the way” text from Wilson last month with this picture.  ;)  It turned out to be quite an honor as only one ROTC cadet in each grade is given the APU President’s Award…

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…we are proud of his hard work and dedication.

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May 7th – MOVE OUT DAY!!!!

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A celebratory lunch with friends at The Hat!

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Maxo couldn’t join us on our little road trip down south because he was busy taking the SATs on Saturday but the bros finally reunited later that evening!  (Wearing their matching hats…how cute.)

With Wilson home during the day, my brain is shifting to “summer mode” but I can’t quite go there yet as Max, Olivia and Rudy still have a little less than a month left on their school calendars.  We did, however, have our annual Teacher Appreciation Dinner on Monday which is a big indicator that the end of the school year is near.  Ha Ha  What a special time we had with two of Max’s teachers from DPHS, two of Olivia’s teachers from GVJH and 4 from “Team Rudy” at Mountain View Elementary & their families!!!  There is always much to celebrate and the folks we honored on Monday have been key to the kids’ successes this year…and what amazes me and Rolf is that they are just a small representation of an even larger community of quality, committed people who are investing and making a difference in the lives of our kids on a daily basis.  Yay TEACHERS!  Yay School Nurses and Therapists and Aides! Yay Administrators and Staff!  We are deeply grateful!

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Teacher Appreciation Dinner 2016

And so, we are in the final stretch.  Max is feeling the heat, especially, with his AP and SAT Exams this month.  He has actually handled the added academic stresses of the junior year with great confidence (and his trademark humor) which has helped to diffuse my anxiety for him!  Ha Ha   He is starting the college search process and it’s all very exciting…we’re looking forward to watching where his search will lead!

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Max getting into the spirit on his AP US History exam day!!

Olivia wraps up her volleyball season this weekend.  She has her eye fixed on high school sports for next year…although she has expressed interest in cross country, soccer and volleyball in the past, she’s not sure what she wants to pursue so we’ll see…there are a lot of fun changes and new beginnings ahead for our girl!  ‘So excited for her!!!

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The Killer Kiwi Tournament Champs!

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And. then. there. is. Rudy. 

Rudy has a new nickname at school…Rudy the Rascal!!!  He has been sowing some wild oats this spring with silly antics from time to time that make it hard for him to focus on his school work. Now that Wilson is home, Rudy is even less interested in school.  Every day this week, as we headed out the door in the morning, he stood in protest announcing “I stay right here!”.  Ha Ha  I think he may be experiencing a little spring fever too…a break from his normal routine this summer will do him some good. 

We had Rudy’s bi-monthly check-up with Dr. Harake today…the first of a string of appointments this next month with ALL of Rudy’s specialists as well as trips to the pediatric dental clinic and the pediatric heart clinic at UCLA.  It will be good to check-in with everyone…especially with those specialists we see only twice a year.  

MEDICAL UPDATE:  Rudy’s heart status remains about the same.  Dr. Harake did note that his last blood test on April 26th showed his hemoglobin level is high at 20 (a normal hemoglobin value for Rudy’s age would be on average 13.5).  When I asked him how high is too high, he said anything above 20…so he’s at the outer limit.  Rudy’s high hemoglobin level is to be expected with his condition as his body compensates for the lack of oxygen.  Unfortunately, there isn’t a medication to treat him.  Dr. Harake said that in extreme cases, there is a procedure where blood is extracted and replaced with fluid but he has not done this on a pediatric patient.  It’s concerning but we have some time to research and gather our thoughts before we go to the heart clinic on June 16th with our questions.    It looks like it also may be time to schedule another visit to the cath lab.  It has been almost 2 years since Rudy’s last cath and Dr. Harake would like to get some detailed information on how well his shunt is performing and coil some more collaterals.  Dr. Dan just called from UCLA (after talking to Dr. Harake) and advised us to get the cath scheduled but he wants to round table with Rudy’s surgical and cardiology team to determine if a cath is necessary at this time.   We so appreciate Dr. Harake and Dr. Dan and their team effort in all things regarding Rudy.  We’ve enjoyed a relatively long procedure-free season so a summer filled with medical consults and a cath makes sense if we end up heading in that direction.  We’ll keep you posted.  Bottom line, we’re praying for physical stability and joy for our boy wonder in whatever the summer holds for him.

Speaking of joy, Rolf captured this little video clip of Rudy at church on Sunday…’LOVE IT!

We sure do appreciate your continued prayers…for Rudy’s health and strength especially. This past major illness-free winter was such a gift and I pray his good health continues through the summer as well.  Thank you dear friends!

Special Olympics School Games 2016

April 22, 2016 by

Rudy and his classmates competed in this year’s Special Olympic School Games today and it was, once again, deeply moving!  Thirty-five schools from California’s Central Coast participated in track and field events at the beautiful SBCC La Playa Stadium.  It was a gorgeous day with some beautiful people.  ;)

Events like these are lessons for Rudy in “being a team player” and “embracing the moment…even if you’re not too keen on the activity”!  Ha Ha  Although he has no problem moving with purpose when he wants to, events like the Heart Walk and the Special Olympics are typically NOT those times!  It was a precious time nonetheless and just watching him casually walk around between events was enough to produce a few happy tears!!!

Pictures always tell a better story so here you go…

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Olivia skipped school for the morning and joined us in cheering for Rudy and his classmates…

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Our friend Kyle was super excited that Olivia was there too.😉

 

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A pre-parade selfie with Nurse Sara!

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Opening Ceremonies

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Parade pose!

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Rudy’s first event…the 10M assisted walk.

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He needed a little coaxing from Coach Galvan…

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…but he finished and got a big hug from his teacher Miss A.

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Good job Rudy!!!

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Walking to the award podium.

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Next up? The tennis ball throw.

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Rudy’s third event was the 25M assisted walk and although Rolf gave his very best inspirational pep talk, Rudy pulled the old limp leg maneuver and passed.

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That’s okay Rudy…you get a big hug anyway!

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When all was said and done, Rudy was all smiles and very proud of his Special Olympics swag.

Red Carpets and an Open House

April 19, 2016 by

April started off with a visit from Grandma Jo and her two-week visit included some fun highlights for sure, like…

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…a fun day with my oldest nephew and his family. Grandma Jo got a little time with her great grands!!!

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… a  day trip down to APU to see Wilson and give him a birthday hug in person…he turned 19 on April 9th!! Woo Hoo!!

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…a little fun at home too.😉  Thank you for making the trip Mama!!!

This is an exciting time of year.  With less than 8 weeks of school left in the school year, the calendar is filling up with all kinds of fun events. Rolf and I got to walk the red carpet with Olivia on Friday night at the Hollywood-themed 8th grade Soiree dance…a special tradition for GVJH 8th graders and their parents every year as the 8th graders prepare to graduate and make the big leap to high school.  It’s hard to believe our girl will be an official DP Charger in a few short weeks!!

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PC: Greg Lawler

Rolf and I headed to Los Angeles the following evening to attend Camp del Corazon‘s Annual Gala.  We walked our second red carpet in as many days and were honored to share in celebrating this amazing organization!  It was a great evening and so inspiring…as always!

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The Dolby Ballroom in Hollywood was filled with celebrities but these are the people with whom we rushed to get pictures…Team Rudy Superstars Dr. Rick and Dr. Dan!!!

Another indicator that the school year is winding down is Open House night at the elementary school!  Rudy was so proud to walk around his classroom and show off his hard work…

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Rudy and Rolf with Rudy’s teachers…Miss Avedissian (Special Ed) and Mrs. Gallo (General Ed)

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We also stopped in to see Rudy’s Special Ed teacher for next year! Yay Ms. Ochoa!!!

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…and 2nd grade General Ed teacher Mr. Latta!!!

There certainly were a lot of smiles tonight at Rudy’s Open House…great joy over all the fun & progress he experienced this year and great anticipation for the year ahead in 2nd grade.  SECOND GRADE!  Amazing!

We’ve had a bit of a heatwave this week which means the pool has been getting some good use…Rudy is usually the first to ask to go in and is growing in his confidence in the water…thanks to Rolf and his pool play:

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“Again, Dad. Again!”

Next up?  The Special Olympics on Friday!!!!!  Stay tuned….

 

 

 

 

Extreme Spring Cleaning

March 31, 2016 by

Today is the last day of March and I think we can safely say that with the end of March comes the official end to the flood/rebuild/move-in saga!!!  Yay!!!  It’s so good to have our house back and Rudy has had fun the past couple of days rediscovering “his space” and toys that were packed away for three months.  :)  We had a bit of a delay with the carpet installation a couple of weeks ago.  As a result, it didn’t get installed until last week which put us in the middle of Holy Week.  We were able to get the furniture unpacked right away but that was about it…the family’s schedule was full through Easter so the goal shifted to empty the POD this week…just in time for Gma Jo’s arrival next Monday!

The rebuild delays were frustrating toward the end but it’s certainly wonderful to have a fresh, new half a house at the start of spring (the ultimate in spring cleaning!)…just in time, too, as life ramps up  with all the end of the school year activities just around the corner.

March also included some pretty precious “life moments” for Rudy and the family…particularly surrounding Easter.  Here’s a little recap:

The beginning of March was big for Max as he turned 17 years old AND started the spring Lacrosse season at DP!  Hello Spring!!!

The final step in the rebuild process inspired Olivia’s creativity! 😉

Between the SBRM recovery program graduation and Easter, we’ve had a lot to celebrate with our friends at the Rescue Mission this month and Rudy was happy to be in the middle of it all…

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Rudy was very proud to get his own bowl of “soup” during a mid-week visit for dinner with the residents.

The SBRM hosted it’s annual Easter Feast for the homeless on the Thursday of Holy Week…Rudy started out as a greeter with me but quickly found a spot in the middle of the courtyard where great fun was to be had…and where there is never a shortage of attention to be harnessed!

A blessed time with some very special friends…

After the Rescue Mission feast, we stopped at church for a Maundy Thursday tradition that includes a symbolic foot-washing activity.  Olivia sat Rudy down and quietly explained to him how and why we were doing it.  Eager to do what we were doing, Rudy quickly joined in and helped wash all our feet!!!

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Easter included a fun visit with Wilson who came home for the weekend!! Yay!!

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This week is spring break for Max, Olivia and Rudy but Rudy is flying solo here at home with me and Rolf because Max and Olivia went to Mexico with their youth group to work on a building project and help at an orphanage.  ‘So excited for them but we miss them TONS!

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A little spring break fun for Rudy during a lunch date with Dad…

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It has been an active month for Rudy.  He ends most days with his head hitting the pillow hard in anticipation of good sleep.  Many nights he doesn’t even make it to the bed…

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Play hard.  Live hard.  Sleep hard.  That’s how Rudy rolls and we’re so thankful for the special experiences he so joyfully embraced this month.  This month also included quite a few medical appointments & consultations which serve to reinforce how truly special all the “life stuff” is!!!  Ever so grateful,

Practicing Patience

March 8, 2016 by

The rebuild after our New Year’s Day flood continues to make progress…it’s actually moving along at a decent pace (thanks to Rolf’s woodworking skills) but projects like these always take longer than is convenient and I’m starting to experience crazy cabin fever requiring me to actively practice patience…I’m more than ready to unpack the POD and get our house put back together again.

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The lack of space in our house due to the rebuild has forced Rudy to find creative play space…he found his way into the bathtub the other day and was very proud of himself when I finally found him!!!:)

I celebrated my 50th on February 27th and the bday fun lasted all weekend long.  Thanks to Rolf and the big kids, there was a nice balance of family, friends & surprises which made turning fifty pretty awesome!!  I have much to be thankful for at this stage in my life and it just doesn’t seem right to begrudge the aging process so I’m embracing the big 5-0 and praying for patience in that process as well. 😉

With that said, I’m kind of surprised by my delayed reaction to having a child a little later in life.  When Rudy was born, I wasn’t bugged by the fact that I was an older mom…in fact, once I got over the shock of being pregnant again, I welcomed the challenge.  Now, all of a sudden, I’m taken back a bit…in a season where so many of my friends are watching their kids get married and they’re becoming grandparents for the first time, it feels foreign to be 50 and still have a 7 year old.  I know it’s not that big of deal because, more & more, women are having babies in their 40s but there aren’t too many in my circle and I guess it just feels like being an older mom adds an additional spotlight to this milestone bday in particular.  :)  Not a bad thing…just a unique piece of my puzzle to process.

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My birthday weekend started off with pajama day at Rudy’s school!!! He made me chuckle on the ride to school all decked out in his candy stripes.

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My Birthday Eve included a visit to the movie theater to see “Eddie the Eagle” with some friends!!! A BIG thanks to the Lawlers who took on Rudy duty!:)

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February 27th started off with a trip to Santa Maria to watch Max play hockey followed by an impromptu party at Del Taco with hockey friends! Woo Hoo!

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We couldn’t resist a quick vista stop on our drive back down the coast…it was such a gorgeous day! Rolf and Livy took advantage of an approaching train to smash some pennies…but retrieving them took some time.:)

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The best part of the day, however, was having my babies together again! Wilson surprised me by coming home for the day with our good friends from Los Angeles!!! Ahhhh, it did my heart good to have a little family time at one of my favorite restaurants!

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Thank you friends!!

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Thank you Rolf!

We ended the weekend by attending a Global Leadership Connection Ceremony to support Max and fellow juniors selected from SB area high schools.  It was quite inspiring and I was glad to end my birthday weekend on such an encouraging, hopeful note.

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The GLC mission statement – LOVE it.

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Classic Max

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Can’t believe this boy turns 17 yrs old this week!!!!

Rudy had his annual physical last week.  It was an encouraging visit where Rudy’s general health is concerned.  Rudy’s weight gain in the last 6 months bumped him up to the 25% percentile for his age and his height remains in the 10% percentile.  Dr. Abbott was impressed by Rudy’s developmental progress (especially evident to him in his speech) and the healthy winter Rudy has had so far.  We do need to follow up with the urologist again, however, because of a pesky undescended testicle.  Although the urologist hasn’t felt it necessary to address it in past visits, Dr. Abbott wants it checked out again and corrected at some point.  We see Dr. Harake for a cardiology check up on Friday…not expecting any change there.  It’s a full week with various appointments, Max’s 17th birthday on Thursday and a SBRM graduation on Saturday.  Life is filling up again as we approach the official start to spring!!!  Woo Hoo…Welcome Spring!!!!!!

February Fun

February 20, 2016 by

We said goodbye to our Dodge Caravan last week and welcomed a new-to-us Toyota Sienna into the family…after multiple repairs and a few thousand dollars, it was clear the caravan was on it’s last leg and we were forced to face the inevitable purchase of another medical van.  We are blessed to have safe, reliable transportation again…something I don’t take for granted for sure!!

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We gave the caravan one last look at the ocean before it went to the auction block…for parts most likely!

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Farewell notes!

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“Mommy’s COOL car!”

I have been struck lately by how truly evident God’s grace is in the lives of the big sibs…they are investing their time in good things and they manage it all well.  I am in awe of them and grateful for the many ways they inspire me daily.

Maxo is busy juggling the end of his hockey season while starting up LaCrosse practice at the high school…he was asked to speak at the Fellowship of Christian Athletes (FCA) club at school this past week and was recognized for his leadership potential recently with a nomination to participate in the GLOBAL LEADERSHIP CONFERENCE…open to selected juniors from all the area high schools each year.  It’s fun to watch him grow as a young leader…

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Max speaking at FCA…(thanks for the pic Aaron Caluza)

We got a fun glimpse into Wilson’s world through pics from his first military ball this weekend.  He is thriving at APU and loves his ROTC experience so far.  He’s getting closer to fulfilling his childhood dreams…makes me proud and scared all at the same time.

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Fun with friend Kyla.

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I LOVE laughing pictures!!! ;D

Olivia’s volleyball season started today and her team grabbed second place overall in the tournament!  It’s thrilling to watch our girl play hard and enjoy herself…she is disciplined and elegant on and off the court.

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Rudy the happy spectator!…

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…except when the whistle is too loud.

And then there is Rudy who embraces is all with GREAT enthusiasm…whether it is school, church, playing with cars on his bedroom floor or watching his big sibs sporting events…Rudy’s joy in all things is contagious (and a little humbling)! 😉

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Life has it’s daily challenges but it’s moments like these that bring meaning to the tough stuff!  ‘Grateful for it all today.

Happy Valentine’s Day 2016

February 14, 2016 by

‘Wishing you all the happiest heart day EVER!!!  As is tradition, here is this year’s rendition of the Valentine classic…”Will You Be My Valentine?”! 

And a little walk down memory lane…

2008

2009

2011

2012

2014

2015

Happy Valentine’s Day dear ones!

CHD Awareness Week

February 9, 2016 by

Rudy came home early from school on Friday with a bug…a thick cough, congestion and low energy.  Thankfully he hasn’t registered a fever but the congestion kept him home from school yesterday and today as well.  Although we’ve laid low at home mostly, we did stop by Rudy’s class on Monday briefly to share a little bit about CHDs for National Congenital Heart Defect Awareness Week…so grateful for the opportunity to share with Rudy’s classmates!  ;)  We’re hoping Rudy can lick this bug quick and head back to school by Thursday to share in his classroom’s Valentine exchange.

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Thinking of and celebrating Rudy, his fellow heart warriors and our heart heroes who have passed away…all of whom personify one of my favorite quotes: “In the end it won’t matter if you have a few scars, but it will matter if you didn’t live.” -Rich Mullins.

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‘Grateful for the lessons we’re learning from Rudy about what it means to really live.

Big Boy Skills

February 5, 2016 by

Rudy’s class got another “behind the scenes” look at a local hamburger joint during a field trip to In ‘n Out yesterday.  It was a fun time to hang out with friends and it also turned out to be a very helpful exercise in how to order food at a restaurant…turns out Rudy is a fast learner!

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An In ‘n Out selfie with Miss A and Nurse Sara.

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After the tour, we gave Rudy some time off the oxygen and he immediately made the rounds to visit his friends sitting at other tables…

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…Chillin’ with the big boys!

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Rudy’s turn to order…

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“Ummmm, hamburger and french fries…please.”

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Although Rudy doesn’t take bites of anything solid yet, it sure is encouraging to see him “go through the motions” and take an interest in food.

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So proud!!!

It just so happened that we stopped at Carl’s Jr later in the day for a quick dinner between activities and Rudy insisted on ordering for himself!!!  Ha Ha  He confused the workers a little bit by ordering things they don’t offer on their menu but he was very proud to show off his new big boy skill…now if we can just get him to eat all this food he is so motivated to order. 😉

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Mountain View Move-a-thon

February 2, 2016 by

Today was the annual Move-a-thon at Rudy’s school and Rudy did a GREAT job.  He conducted a FB “dollar donation” campaign and raised $100.00 (doubling his goal of raising $50) for his school!!!  More importantly, he participated in each of the four events and had a good time with his classmates. 😉

As you know, he doesn’t like all the fanfare that comes with events like these, but he was able to focus and complete the activities…he’s maturing and it shows.

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Our first stop was the running event and the goal was to walk around the track once. Nurse Sara and I were there to help steady Rudy on the uneven ground but he walked it on his own. He stopped a couple of times to catch his breath but he didn’t sit down once.😉

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The next event was an epic obstacle course…he stayed to the side so his classmates could run the course at their own pace…

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…but occasionally he’d snag a workout partner.:)

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Although you can’t tell from the pictures, this morning started out quite cold and Rudy needed a little extra oxygen and time to warm up between events…thanks to nurse Karen and an extra blanket Rudy was snug as a bug.

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The last event involved learning some karate kicks. Rudy got to try it twice and when we headed back to his wheelchair, he turned to Sara and said “I like that”!!! The karate station was definitely his favorite!😉

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Aaaaaand, the boy wonder fell asleep on the way home!!! The sign of energy well spent! GREAT JOB Rudy! The next big athletic event for Rudy will be the Special Olympics track meet later this spring…stay tuned!


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