Archive for October, 2016

Reality Check

October 27, 2016

This week has been a bit of a reality check as Rudy has had both developmental and medical evaluations.  Here’s a recap:

Rudy’s IEP was on Tuesday morning.  This is an annual meeting of Rudy’s educators to establish an individual educational plan and discuss his various academic, social and physical goals.  This year’s IEP was particularly comprehensive as it included a triennial reevaluation to determine Rudy’s eligibility for services.  The eligibility assessment team included Rudy’s special education teacher, his adaptive PE specialist, district phycologist, district nurse, the speech and language pathologist and occupational therapist.  All were in attendance today along with Rudy’s CCS OT & PT, his general ed classroom teacher, district special services representative, Rolf and myself.

There weren’t any big surprises and, in general, we couldn’t be more pleased with Rudy’s progress and attitude toward school.  He is motivated to learn (most of the time) and eager to put what he’s learning to practice (especially when it involves sporting equipment of any kind)!  😉  All in all, IEPs are a positive experience and Rolf and I always leave grateful for the community of professionals who pour so much energy and expertise into our boy. That being said, IEPs are also a bit difficult to face as they are designed to take a microscopic look at Rudy’s deficiencies and areas of need…even more so in the triennial.

The report presented on Tuesday determined Rudy’s eligibility and need for continued special education and related services based on the following criteria: Intellectual disability, Orthopedic Impairment, Multiple Disabilities, Health Impairment and Speech or Language Impairment.  One change is that as Rudy gets older and the academic divide between Rudy and his typical classmates becomes wider, the time Rudy spends in his special ed classroom becomes greater (the special ed/general ed split that was 50/50 the last couple of years is now more like 75/25).  In addition, the triennial report included approximate age equivalent determinations based on the psychologist’s assessments.  Rudy was tested in cognitive functioning categories like fluid reasoning, knowledge, quantitative reasoning, visual spatial processing and working memory (resulting in an average age equivalency of 3 years and 5 months) as well as in social/emotional functioning categories like communication, daily living skills, socialization and gross/fine motor skills (resulting in an average age equivalency of 3 years and 3 months)…it’s not something I dwell on too much but it does make me a little sad.

On Wednesday, Rudy had his routine appointment with Dr. Harake and monthly blood draw.  Thankfully there isn’t a significant change in the ventricle size or the tricuspid valve leakage since Rudy’s echo 2 months ago…still moderate to severe…and his hemoglobin level is still at 21.  Rudy’s next appt at the Heart Clinic/UCLA is December 8th and we see Dr. Harake again on December 20th.  In the meantime, Drs. Harake and Dan have recommended we schedule an appointment with Rudy’s surgeon so we are hoping to coordinate that consult with our trip down on December 8th.  We’ll see.

There has been a lot to process this week, my brain is tired.   It’s time to refocus and prepare for Halloween and all the fun of the next few days.  The holiday season is upon us and I’m ready!!  Let me be the first to wish you a Happy Hallowthanksmas!!!

 

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Rudy at the pumpkin patch with his classmates today.

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He picked out a good one!

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A Weekend Full of Fun

October 24, 2016

Since there will be much to document this week, I thought I’d slip in a quick update on our weekend that included a homecoming halftime, good time with dear friends, a camp fundraiser AND Monster Ball!!  I just love fall…the cooler weather, the fun festivities and all the yummy comfort food!  🙂

Max had the honor of being a member of the 2016 Homecoming court.  The football game and crowning of the queen happened on Friday night.  The king is crowned at the dance which isn’t until November 5th so Max can’t hang up his royal hat just yet.

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The little prince with the Homecoming prince!

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Prince Max and Princess Joanna

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The traditional convertible parade!

Rolf, Rudy and I headed down to LA Saturday morning for the annual Camp del Corazon Family Festival & Reunion fundraiser.  Thanks to the generosity of “Team Rudy”, we were the 2nd top fundraiser!  Woo Hoo!!!  Way to go Team Rudy!

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2nd Place fundraisers!!

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Celebrating with Lisa Knight – Camp del Corazon co-founder!

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It’s always a huge encouragement to connect with Rudy’s former CTICU nurses…

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…and HLHS survivor Jeni & her husband Nick!!

Then, on Sunday, we went to the annual Monster Ball party with many of Rudy’s special needs buddies and the UCSB Gauchos!

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Rudy getting some pointers from Gaucho Alex.

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Rudy and Alex met last year and had fun reconnecting!

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Rudy has quite an arm…

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…and swing!

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Thank you Gauchos!!

The Gauchos’ head coach has a son and daughter who went to preschool with Rudy.  Shortly after we arrived, Coach brought his son over to Rudy to say “hi”…his son took one look at Rudy and said to his dad “That’s not the same Rudy!”.  Ha Ha  I LOVE IT!!!

Olivia and Wilson had big weekends too…

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Olivia ran in the Mt. SAC X-Country Invitational…

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…and Wilson competed in the Task Force South Ranger Challenge competition. His team finished in 1st place earning them a trip to Ft. Lewis in a few weeks for the next round of competition.

It was a big weekend for the whole family.

Next up?  Rudy’s triennial IEP meeting tomorrow, cardiology appointment on Wednesday, and a visit to the pumpkin patch on Thursday!  Yay Fall!!  🙂

 

 

A New Season

October 20, 2016

This has been a different fall for our family.  With our AYSO days behind us, fall doesn’t have the same kind of intensity as it once did with multiple evening practices, Saturday games and “Coach Rolf” at the helm.  🙂  The big kids are more and more independent and, more and more, Rolf, Rudy and I find ourselves chillin’ at home in the evenings.  A new season is emerging indeed.  😉

I think we’ve appreciated being a little less CRAZY BUSY this fall but we sure haven’t had a deficit of fun…quick visits from friends and fun milestones have kept our family on our toes!

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One of the great advantages of living on the Central Coast is that we make a handy pit stop for friends heading up and down the coast! Rudy clowning around with Judy! 🙂

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Olivia was excited to receive special recognition from her XC coaches last week. She’s off to another overnight meet this weekend and enjoying the experiences she’s having with the High School team.

There was another special accomplishment in the family last week.  ‘Thought I’d give you a “behind the scenes” look at our family’s response to said accomplishment…

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I appreciate Max keeping it real, Wilson’s PSA and just LOVE that Olivia managed to incorporate the word “magical” into her response!!!  We celebrate bowel movements…especially those that occur in the potty.

The celebrations continued (I’m sure Maya will love this segue) with a quick visit from Maya sandwiched between engagements on her calendar:

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Yep, folks, he went there!  (Wilson was home too but, sadly, I failed to get him in the shot!  Wilson!!!, why aren’t you in this picture????)

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Poster boy for “mischievous”…

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…and, of course, we made a stop at Kyle’s Kitchen! Surprise, Surprise!!  Ha Ha!

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Rudy and friend Thomas were twinning at church on Sunday.

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Max and Olivia were twinning too!…For spirit day at school!!!!

Ha Ha!  Fun stuff!

So, we have a big week ahead:

Rolf, Rudy and I are heading down to North Hollywood on Saturday for the annual Camp del Corazon Family Festival and Fundraiser.  We’ve been raising $ this month for this amazing organization in honor of Rudy’s birthday…if you’d like to learn more about CdC or make a donation, click here!

Rudy’s annual IEP is next Tuesday…this will be a particularly thorough IEP as it is his triennial so we expect to examine all aspects of his educational plan with many voices speaking into the assessment…always an interesting (and somewhat emotionally exhausting) process!

Then, on Wednesday, Rudy has his regular echocardiogram and exam with Dr. Harake.  I try hard to resist the temptation of living from one appointment to the next but, I admit, I’m eager to check in with Dr. H and get the latest echo info. We’ll keep you posted…

In the meantime, enjoy the sights, scents and yummy flavors of autumn!  May the changing of the season bring refreshment to our hearts and souls.  😉

 

 

Happy 8th Birthday Rudy!

October 2, 2016

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Rudy celebrated his 8th birthday out at the Dos Pueblos Ranch yesterday with approximately 324 guests!  Although Rudy meandered around the ranch believing all the preparation and commotion were for him, we were actually there to participate in the 15th annual Back to the Bayou fundraising event for the Santa Barbara Rescue Mission.  Sadly, we were so busy that none of us took any pictures at the ranch but we did enjoy a little post-Bayou party at home later that evening.  It was a full day for our family but Rudy definitely felt celebrated in the midst of all the activity and we were blessed to share the day with so many SBRM friends & supporters who have a personal interest in and love for our family as well…the best birthday gift one can get is to know how very much he is loved and Rudy certainly got that tenfold!  Happy Birthday Rudy!!!

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An intimate dinner party on the ranch!

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A Bayou after-party with friends Jeremy and Becky!

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Olivia worked hard making Rudy’s Lightening McQueen cake just right…

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…and Rudy worked hard  “eating” it!

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