Archive for the ‘Pictures’ Category

Rain Out

February 11, 2017

Rudy has been raising money this past week in a $1.00 donation campaign for his school’s Move-a-thon that was supposed to happen yesterday.  Sadly, the Move-a-thon had to be postponed (for the second time!) due to rain.  Spirits might have been dampened a bit but not our gratitude!  A BIG thank you to the dear ones who sent Rudy a $1 (or two!).  Hopefully we’ll get to share some pics of the fun when the school field dries out and the Move-a-thon is rescheduled!

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A rainy school drop off…full of smiles!

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Rudy’s name was entered in a school raffle for the donations he turned in and he was one of several winners! Rolf is happy he won the Surf Country Surf Shop gift certificate. Ha Ha

We actually welcome all this rain.  After being in a drought for nearly 5 years, the many winter storm fronts that have passed through our area are desperately needed.  The hills surrounding Santa Barbara are green again and our lakes are filling up!  A good thing for sure.  May our land get it’s fill.  Happy Weekend Everybody!!

Up, Up and Away!

February 7, 2017

Rudy had another big “first” this past weekend.  He (along with Rolf and Max) had his first private plane adventure thanks to a friend of ours here in town.  I really can’t say much about it since I wasn’t there but Rolf was able to capture a bit of the take off on video. Clearly Rudy had something to say there at the end of the short clip but couldn’t quite find the words…priceless!

The Geyling men enjoyed their 30-minute aerial tour of Goleta’s beautiful coast and bird’s eye view of our cul-de-sac.  SO FUN!  A big thanks to Steve (and his dad) for contributing to those “quality of life” experiences that, quite literally, expand world views, lift spirits and fuel dreams!  Awesome!!

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Our cul-de-sac in the top right…

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Thumbs up!

While the boys were flying the friendly skies, Olivia and I had a fun girls weekend visiting friends in Temecula and Los Angeles AND we even snuck in a quick lunch with Wilson! Speaking of Wilson, he was featured on the APU Honors College Facebook page last week.  His quote encouraged me…the occasional sound bite into his life at the ZOO is always a treat.

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Speaking of college life, Max decided this week that he will be attending Point Loma Nazarene University in the fall!!!!  We are thrilled for him.  I lived in San Diego for a couple of years and LOVED it there…I’m certain Max will fall in love with it too.  Yay PLNU Sea Lions!!!

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Rudy is definitely feeling more like his old self after battling a virus for a couple of weeks…just in time for his school’s annual Move-a-thon scheduled for this Friday, CHD Awareness Week, Valentines Day, the fun 4-day President’s weekend and a trip to San Diego at the end of the month!!  Woo Hoo!  Stay tuned for some fun pics…;)  Happy February Everybody!!!

Not Yet

January 27, 2017

Rudy had an EEG appointment yesterday.  It has been several years since his last EEG but because Rudy hasn’t had a seizure in almost two years, Dr. Corazza recommended we retest to determine whether or not we can begin to wean Rudy off his daily doses of phenobarbital.  Rudy was a happy and cooperative ROCK STAR during the hour long test and the tech said she was able to get some “beautiful data”!  Dr. Corazza called later in the evening with the results…unfortunately the results are “not normal and continue to show a seizure tendency” so he strongly recommends that we leave Rudy on the pheno for now.  I’m a little disappointed as it would have been super fun to see some healing in this area for Rudy but I’m not surprised given the nature of Rudy’s brain injury.  So, we’ll continue to do what we’ve been doing and pray Rudy’s current dose of phenobarbital will continue to keep the seizures at bay.  He’s actually at the maximum dosage for pheno…if seizures were to surface again, we’d have to make a medication change.  Anti-seizure medications can have some pretty disturbing side effects and Rudy has done so well on pheno that we hope it can be his drug of choice as long as he needs it.

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On The Mend

January 25, 2017

We’ve had a quiet start to 2017…Wilson headed back to APU the first weekend of January and hit the ground running in his new schedule of classes.  Max and Olivia still had semester finals to prepare for when they headed back to school on the 3rd.  They were thrilled to finish finals week last Friday!!!  Olivia sailed through her first high school finals week and Max is one big step closer to graduation…the countdown is ON!  🙂

Rudy enjoyed getting back to his friends and teachers at school after the long break.  He’s back to his twice weekly physical therapy sessions but has yet to be assigned to a new OT since his last OT retired in December.  He had a routine check-up with his neurologist a couple of weeks ago.  Because Rudy has been seizure-free for almost two years (his last seizure was in Feb. 2/15), Dr. Corazza scheduled an EEG for tomorrow to determine whether or not we can begin to wean Rudy off his anti-seizure medication.  That would be exciting!!!  We’ll keep you posted…

Rudy has been battling his first bug of the season this week.  He was sent home from school early last Thursday and has been home sick ever since.  Thankfully, his fever broke on Monday and his energy is returning.  We’re hoping he’ll sleep through the night tonight (after several sleepless nights) so he can return to school tomorrow.  🙂

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Rudy happy to be back at school with his friends and teacher Ms. Ochoa!

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On the mend after a week long viral bug.

Rudy has actually had a long, healthy run the past several months so we pray this bug will run it’s course quickly and be the end of Rudy’s cold and flu season!  😉  ‘Hoping your new year is starting off healthy and happy!

 

A Walking Miracle

December 11, 2016

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

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!!

Super Rudy and His Sidekick

November 2, 2016

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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

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.  😉