Goodbye 2016

January 1, 2017 by

We sure enjoyed our Christmas and hope you did too!  Our holiday was filled with the usual Rescue Mission and church events but we also had the added joy of celebrating with old friends from out-of-town this year.

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Rudy is good buddies with Joyce the camerawoman from our local ABC news station and tried hard to use his insider connections to steal the stage during an interview with Dad at the SBRM Christmas Feast.

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Christmas fun with the Zovaks.

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The Zovaks have lived overseas most of our kids’ lives so it was particularly fun to see the kids reconnect!

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Christmas eve candlelight service.

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Christmas Day 2016

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Rudy’s favorite SBRM donation of the season!!!

We made the most of every second of Christmas Day (nearly pulling an all-nighter) as we got up before dawn the following day to make our departure for the airport at 4:30am!  We traveled to Key Largo, FL for a Geyling family reunion…big trips like this are  uncommon for us, especially around the holidays, but we enjoyed the opportunity to connect with Rolf’s family (many of whom Rudy and I haven’t seen in 5 years) and see a part of the country none of us have been to before.  Rudy traveled well and enjoyed 4 days of non-stop cousin fun!!

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Beautiful Key Largo, FL

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The Geyling Cousins

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Quality sibling time too!

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Oma and the California Grands!

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Another set of siblings having fun! 😉

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Rudy discovered the joy of boating this trip…on small ones…

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…and big ones! (with Captain Gavin on a snorkeling cruise)

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Olivia, once again, made friends with dolphins at the Grassy Key Dolphin Research Center…

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And the big boys discovered the joy of jet skis!

We packed in a lot of fun in the four days we were with Rolf’s family…a great end to 2016 making fun memories to cherish for years to come (Thank you Oma!!)!!  Bye, Bye 2016!

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Happy New Year dear ones!  Welcome 2017!

 

 

 

The Christmas Countdown is ON!

December 21, 2016 by

With Christmas just 4 days away, excitement and anticipation are building for sure!  Rudy has figured out the whole unwrapping gifts routine making it necessary for us to rewrap a few gifts already!  The gifts that arrive early and typically sit patiently under the tree until Christmas have now been stashed in the closet for safe keeping!!!  Ha Ha

The last couple of weeks have been filled with a combination of holiday festivities like the SBRM Staff Christmas Party and Auxiliary Tea, key medical appointments for Rudy and some Silver By Trish shows.  In the midst of all the seasonal and routine, we enjoyed making a new friend from Australia when we hosted Luke for a few days last week through a program at the kids’ high school.  Max and Olivia were great hosts and had fun introducing Luke to many of their friends.  Rudy was particularly happy to have a new playmate!  Ha Ha Thanks again, Luke, for being fun and spontaneous and for putting up with our brand of crazy! 🙂

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Rudy’s new Australian friend Luke!

Last week also included a bittersweet goodbye to an old friend when Rudy’s OT celebrated her retirement from the Medical Therapy Unit!  We will certainly miss Janine but we are also very excited for her and hope to see her around town doing fun retirement things! 😉

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Saying goodbye to OT Janine!

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Bye Bye Friend!

I got to go to Rudy’s class for some more holiday fun on Friday and while I was there, Rudy showed off his new classroom desk!

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Big boy Rudy at his desk.

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School fun!

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Letter to Santa? (check)

Wilson is home!  Yay!!  Max, Olivia and Rudy are on winter break!  Yay!!  And we’re ready for Christmas!  Double Yay!!

Oh yeah, and Rolf reached a major 2016 milestone yesterday:

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1000+ miles in 2016!! Way to go Rolf! YAY!!

Merry Christmas dear friends!!  Wherever you are in the world and whatever you have planned for this weekend, I pray it includes memory making moments with people you love and countless reminders of how very much you are loved and appreciated!

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A Walking Miracle

December 11, 2016 by

It’s officially the Christmas season and we’re enjoying all the traditional activities that accompany this time of year.  The kids have one more week of school before their winter break and we’re counting down the days!  😉  I skipped town the week after Thanksgiving to spend a couple of days with my mom in Kansas for her 85th birthday!  It was short but sweet and we made the most of our 2 1/2 day visit…

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Happy Birthday Gma Jo!

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While I was gone, Rudy enjoyed a field trip to In ‘n Out with his classmates…

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Yum!

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…and the start of Maxo’s high school hockey season in Santa Maria…

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…and when there is a car in the cul-de-sac that looks like “Sheriff” from Radiator Springs, you gotta get out of the minivan to take a picture (even if it means you’ll be late for school!).

I got home from Kansas just in time for a string of Silver By Trish trunk shows and we squeezed in decorating the house as well!

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Rudy’s impersonation of a Christmas tree!

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The stockings are hung by the chimney with care…

Rolf, Rudy and I headed down to UCLA early Thursday morning for a visit to the heart clinic and a meeting with Rudy’s surgeon.  Rudy had an extensive echo exam and Dr. Alejos confirmed that there isn’t much change in Rudy’s heart status since his last echo.  Rudy’s tricuspid valve leakage and hematocrit level are high but his heart muscle is strong!

We had some free time between appointments so we visited the PICU on the 5th floor and enjoyed seeing some familiar faces…Roger and Dr. Kelly.  Rudy insisted on walking and he made his way around the 5th floor corridors as if he owned the place…the sight of him walking around those halls that are filled with so many memories never ceases to take our breath away and it’s always great fun to see how those who cared for him in those first several months of his life react to seeing him now. 😉

As we have described before, discussions about what to do next have come to a bit of an impasse since Rudy’s heart cath in July. The contributing doctors in conference who are unfamiliar with Rudy’s history and are just looking at the numbers, feel the Glenn is the logical next step.  Those who know Rudy’s history disagree.  Dr. Dan (cath cardiologist) encouraged us to talk with Dr. Brian Reemtsen (surgeon) directly to help us sift through all the varying opinions.

Although we have had quick consults with Dr. Brian in the hospital hallway after past caths, it has been years since we’ve had a detailed conversation with him and Rolf & I were eager to hear his thoughts on where we stand in Rudy’s treatment plan.  Dr. Reemtsen was direct in his communication with us on Thursday…although there are cardiac indicators and pulmonary progress that would typically represent the need and green light for surgical intervention, he is not recommending surgery at this time.  The main reason being that what can be done surgically wouldn’t make enough of a difference to warrant the risks…even good surgery results wouldn’t bring a marked improvement to Rudy’s life and/or heart function.  Dr. Brian believes the greatest risk to Rudy from a surgical standpoint is his issue with chylous fluid.  Chyle is a milky bodily fluid filled with free fatty acids (FFAs) that is transported through the lymphatic system.  Rudy battled the leakage of chylous fluid in his pleural cavity (chylothroax) for 8 weeks after his heart surgery in 2008 and then again in his abdomen after his stomach surgery in 2009.  During the height of his battle, Rudy lost a third of his body’s total fluid EACH DAY.  Dr. Reemtsen told us that he has never had a patient (or heard of a patient) who had chylothorax as severe as Rudy and survived.  Based on this history, the team is very concerned about the risk of chylous fluid leakage during any future surgery.

He also said that he doesn’t know of anyone who has survived as long as Rudy with no intervention!  Rudy’s current status as a post-Norwood/pre-Glenn patient is working for him and until his heart muscle function starts to deteriorate, he feels strongly that we should leave things as they are.  As he put it, he isn’t wishing we could do something but rather hoping we don’t need to do anything. 

It was a bit surreal to have this serious and, at times, heart-wrenching conversation as Rudy walked circles around the office mischievously playing with the light switches and trying persistently to push every button on Dr. Brian’s computer.   In the middle of it all, Dr. Brian pointed to Rudy and said “if you had told me that he would one day walk into this office, I wouldn’t have believed it!”…particularly meaningful coming from Dr. Reemtsen who is not one to be overly dramatic or prone to exaggerate.

Although our conversation was frank and heavy, it was encouraging all in all.  It was helpful to hear a strong, definitive opinion and Rolf and I left feeling confident we’re in a good space with Rudy.  I think our perspective is slowly shifting from “anxiously waiting to do something” to “actively choosing not to do something“…a surprisingly helpful distinction.   So, for now, the plan is to continue Rudy’s palliative care with a huge emphasis on quality of life, share in Dr. Brian’s hope that we won’t need to do anything and embrace the miracle that he is.

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Rudy and Dr. Brian are all smiles

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Rudy in front of the hospital Christmas tree.

Rudy was back at school on Friday and enjoyed a surprise visit from our friend (and Rudy’s fellow HLHS survivor) Jeni…

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Rudy and Jeni

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A walk on campus with Jeni and Nurse Evelyn

He and his classmates also enjoyed a surprise visit from Santa (who Rudy promptly called out as special ed aide Todd!!)  Ha Ha

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Ho, Ho, Ho!

Rudy experienced a first at last week’s monthly blood draw…it was the first time he sat all by himself like a pro:

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Yay!!  Big boy Rudy!

Thank you all for your prayers…since the cath especially.  I think we’ve learned a great deal in the follow-up discussions and there is no denying that God is at work in the unconventional (a.k.a. miraculous) HLHS journey Rudy is on!  Blessings to you dear friends!!

Happy Thanksgiving 2016

November 24, 2016 by

I’m cuddled up in bed still…getting ready to hit the kitchen for some fun food prep but enjoying the chill in the air and being under the covers.  Rolf is getting ready to go out for his daily paddle and the big kids are still asleep sprawled out on the living room floor after a movie night.  It’s a quiet start to Thanksgiving 2016 and I’m thankful for today…Wilson’s home and we’re looking forward to a fun celebration with friends later this afternoon.

So before things ramp up around here.  I just want to say…Thank you friends!  Thank you for your kindnesses and encouragement.  Thank you for your prayers and support.  Thank you for expressing your love creatively and for being the hands and feet of Christ in the life of a little half heart and his appreciative family.  🙂  We are rich!

Here’s a little glimpse into this weeks riches…

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Teacher Tracy speaking Rudy’s love language with the new incentive chart she made him at school.

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A quick visit from Nurse Sara and Kayley was a perfect start to Thanksgiving break!…

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…as was a trip to Kyle’s Kitchen with Kathy and Carter!

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Oh yeah, we’ve made a few stops at K’sK this past week…

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The latest being last night!

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Honestly, we’re out of control!

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But the highlight of yesterday was, by far, the SBRM Thanksgiving feast! An afternoon of yummy food, great music and special guests & volunteers!!! There was a sweet spirit of celebration among us all and Rudy was in heaven…(photo credit Dale Weber)

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Serenading Daphanie with big brothers!

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Insisting Wilson’s shakers were binoculars!

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Joining in on the act!

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The Geyling Brother Trio!

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Finding his groove with buddy Ric!

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Chillin’ some more with Ric and meeting new friends!

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(photo credit Dale Weber)

Happy Thanksgiving to you and yours dear ones!  May today be a reminder of how much you are loved and appreciated!!

Grateful

November 23, 2016 by

I’ve had one of those weeks that frustrate the ba-geebers out me…one of those weeks when I’ve been on the phone trying to coordinate Rudy’s care and not getting what he needs and not making any progress on the “to do” list.  It’s part crAPRIA, part bureaucracy and part bad luck.  Unfortunately, I’ve developed a bit of a short fuse over the years when it comes to stuff like this so it doesn’t take much to get my blood boiling.  Yeah, go ahead, transfer my call, make me repeat myself over and over, let’s take this back to square ONE a-gain, better yet, don’t answer the phone, don’t return my calls, IGNORE ME!  Honestly, it sounds so absurd with all the “bigger stuff” going on in our lives but this is what pushes me over the edge and I end up shaking my fists at the phone wanting to scream at the poor customer service representative on the other end “I wasn’t created for this!!!!“.

What grieves my heart is that this isn’t just an emotional reaction to a frustrating situation but that I really do struggle with “purpose” in our journey with Rudy.  I shared about this struggle in a talk I gave at Westmont College  a couple of years ago so this isn’t anything new but it remains a fresh wound.  When the mundane frustrations in this journey overwhelm me and discontent creeps in, I long for the extraordinary things I dreamt of doing when I was young.  Sometimes, when I’m really feeling down, I allow myself to feel guilty over the lack of extraordinary in my life…maybe I’m not trying hard enough or maybe I’m too afraid to “go for it” and I’m using Rudy as an excuse, etc, etc, etc…do you know what I mean?

I share this because I read a blog post this morning that speaks to this VERY ISSUE!!!  I feel like God is saying to me “Here you go.  I see you.  I see where this week has taken you.  This is for you.”  Click here to read the blog in it’s entirety but two quotes that jumped out at me are these:

“You aren’t here to be extraordinary, to accomplish the extraordinary, or to experience the extraordinary. You are simply here to be fully you, limitations and all.”

The author went on to describe a situation he and his wife experienced and added:  “And, for a moment, I love our limitations, because they confined us to this experience. Our limitations nudged us toward this particular mountaintop.”

It’s true!  As limiting and isolating as life makes me feel sometimes, the reality is I’m confined to experiences that, as this blog can attest , are mountaintops in and of themselves.

I’m grateful.

 

November Celebrations

November 14, 2016 by

This has certainly been a perplexing week with much to process as it relates to our country, it’s government and it’s people.  My heart has been deeply grieved during this whole election process and I am left feeling raw.  I read a quote last week by a Presbyterian pastor in Olathe, KS that I can stand behind and it inspired me to commit even more to do life in community & relationship with a purpose to make a meaningful difference in the lives around me…which ultimately brings healing to all of us.

“Unity, liberty and justice require effort from all of us as citizens of this great country. It won’t happen via politics…it will happen through relationships and a shared commitment to dig in to what is so terribly broken in all of us.” -Jim West

Ironically, this has also been a full week of celebrations in our household so, thankfully, there has been much “goodness” to focus on and savor as well.

A week ago Saturday was DP’s homecoming dance so we enjoyed an afternoon of fun preparation before the big kids headed off to dinner and the dance with friends and Rolf, Rudy and I headed to a SBRM (recovery program) graduation.  A big night for so many!

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The traditional corsage making party with friends Tina, Autumn and Hunter…

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The finished products turned out GREAT!

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After graduation, Rudy, Rolf and I headed over to the dance for the crowning of the homecoming king ceremony. As mother of prince Max, I got to escort him onto the stage. Fun for me…not so thrilling for Rudy who, by 10:30pm was DONE for the day!

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Homecoming selfie!

On Monday, Rolf and I celebrated our 24th wedding anniversary…a milestone worth noting:

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November 7, 1992

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We may be starting to show some wear and tear but I’m proud of every grey hair and  wrinkle!  😉

On Tuesday, I had the pleasure of visiting the big kids’ Fellowship of Christian Athletes club at school.  It was fun to see Olivia and her peeps having fun…

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…and to hear Max share about Shadrach, Meshach and Abednego.  He boldly shared how this Old Testament story encourages us all to never doubt God, to dare to be different and to never cease standing up for what we believe in…a timely reflection for sure.

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One of Rudy’s favorite places is the rescue mission…Rolf had a few late nights at work this week so we had “dinner with dad” and the residents on Wednesday night and Rudy was in heaven!

Speaking of eating, we haven’t made it to Kyle’s Kitchen yet this week but we have gotten some fun shout outs from friends who were there!  Ha Ha  We are so grateful for Jay and Deena Ferro, their support of the special needs community in our town and for highlighting Congenital Heart Defects & Rudy this month at KK!!!  Stop in, take a pic and send it to us for Rudy’s gallery if you can!!!

RUDY’s CIRCLE of LOVE:

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This next week will be dedicated to final jewelry prep for my annual holiday jewelry show next weekend!  I have a couple of shows scheduled this season and a couple of trunk shows at local offices too!  So excited!!!  Let me know if you’d like Silver By Trish to come to your office!  Check out Silver By Trish on FB for more details.

School Games 2016

November 4, 2016 by

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Rudy and his classmates enjoyed the annual Special Olympics School Games today.  In past years Rudy hasn’t been a very cooperative participant in the soccer tournament but this year he participated in the wheelchair “Hoccer” competition (a cross between hockey and soccer) and had a blast with teachers Ms. Ochoa, Teresa and Coach Galvan…

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This is as good a place as any to take a break!

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Fun with Nurse Evelyn…

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…and teacher Teresa!

Team Mountain View played hard and finished strong!  All will sleep well tonight!!  Thank you Special Olympics of Southern California for another fun day!!!

 

Super Rudy and His Sidekick

November 2, 2016 by

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Halloween included a school sing and costume parade for Rudy, a day off from school for Max and Olivia, the traditional chili, rice and cornbread dinner with friends and a phone call from Wilson!  It was a full, fun day for sure.

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Rudy gettin’ ready…to stand while his schoolmates sing! The fact that he stood on the stage is progress!!

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Rudy and his helpful sidekick at the school costume parade!

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Super Rudy then had to fly by the school office to wish Miss Jill a HAPPY BIRTHDAY!

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‘Really can’t get enough of these two!

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With Halloween comes beanie wearing weather!!!  Yay!!!

We’re excited to host the graduates of the Santa Barbara Rescue Mission recovery program this week before Saturday’s graduation ceremony!  Max and Rolf have a college visit later in the week and Max and Liv have the homecoming dance on Saturday night as well!  WOW, Welcome November!!

 

Reality Check

October 27, 2016 by

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 by

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!!  🙂