Archive for June, 2016

A Big Send Off and Reconnections

June 24, 2016

We said goodbye to Wilson last Saturday with an early morning drop off at the SB airport.  It took him three flights and a full day of travel to get to Ft. Knox, KY for cadet training that he texted is “real boot camp-style stuff”.  He arrived on base at 9pm, had a 3 hour in-take process, got to bed at midnight and was up to report for duty at 3:30am!!  He said he was happy to get any sleep at all as some of the cadets arrived on base at midnight and didn’t get to the barracks before it was time to report for the day.  He was allowed to call home on Father’s Day and we’ve received only a couple of texts but he sounds good and upbeat…ending each communication with “don’t worry about me”!  Ha Ha  I guess I’m not doing a very good job of hiding my concern for him but I am so proud of his attitude and his willingness to be challenged in this way.

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All packed and ready to go to KY!

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5am airport selfie!

The Sherpa fire continued to rage all weekend but the strong winds cooperated by blowing away from the populated areas of Goleta.  Rolf and Rudy took some time to watch the helicopter water drop refills happening near our home all day on Saturday.  We are grateful for the fire’s containment and the BEAST firefighters who worked it in record heat this past week!!

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A smokey sunset in Goleta!

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Blood Sun

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Rudy cheering on the firefighters!

We definitely felt Wilson’s absence on Sunday as we celebrated the big guy on Father’s Day.  Olivia and Max knocked it out of the park on Rolf’s traditional Father’s Day Tshirt and we had a nice celebration at church.  Although I love special days on the calendar set aside for celebrating, I don’t need Father’s Day to encourage me to appreciate Rolf as a dad more than I already do on a daily basis.  His commitment to his kids is evident in the many ways he chooses to connect with them and the countless ways he serves and provides for them.  He communicates his love directly and indirectly and demonstrates doing life with faith, humor and mad building skills!  🙂  GRATEFUL!!!

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Happy Father’s Day!

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Rudy started summer school bright and early on Monday.  He had a great first week getting to know a new teacher and reconnecting with a big group of special ed friends he knows from the different classes he has been in over the years.  Nurse Jessica is filling in for Nurse Sara this summer and Rudy’s transition has been seamless.

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Summer school pick up with Nurse Jessica.

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Bye, Bye Rudy!

Speaking of reconnections, this has been a fun week of reconnecting with dear friends for our family as well!  I find that life often happens in extremes…in a week where my heart has been deeply burdened and entrenched with thoughts of Rudy’s situation and Wilson’s journey, I’ve also experienced the great joy of being with friends who love our family dearly and are BIG Rudy fans…good for the soul and good for putting Rudy’s amazing progress over the years in perspective.

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Our time with the Peters Family on their way through town was much too short but packed with encouragement nonetheless! Welcome back to the West dear friends!!

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Rudy’s adopted family from Ghana made a stop in Goleta to visit us while on a big US tour. Fred and Evelyn are friends from Rolf’s Fuller days and we’ve enjoyed a friendship across many miles over the years. What a joy it was to watch our kids meet for the first time and YOU KNOW Rudy loved all the extra attention. Rudy’s Ghanian name is “Kweku” (which means male baby born on a Wednesday). After a little African lesson, we decided to add to it…”Nanakweku” which means little prince born on a Wednesday. He sure felt like a prince this week with all the extra love from the Dimados. 😉

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We are still waiting on Rudy’s cath date…’hope to get it confirmed SOON so I can piece together other summer plans before the summer gets away from us.  I’m starting to get a little nervous and need to balance what I WANT to get done with what NEEDS to get done. ‘Praying for peace today.   Peace to you and yours dear friends!!!!

First Week of Summer!

June 17, 2016

Today is a hot and hazy day in Goleta.  The SB County wildfire that made the national news this week broke out in the canyons just north of us Wednesday afternoon.  The sundowner winds we get this time of year have aided in fanning the flames over the past couple of days.  There is little threat that the fire will make it’s way to us but it’s definitely blanketing our community with smoke and a thin layer of ash on everything.  We escaped the smoke and ash yesterday with a trip down to UCLA but we’re back home today and finding ways to keep busy inside.  It is beginning to heat up so we’re praying the firefighters are able to keep their ground and stay safe as the heat, high winds and drought conditions in our area make for serious hurdles in the fight against this wildfire…just the beginning of a long fire season ahead.

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I brushed the ash off my car this morning and then walked back out a bit later to run some errands to find this on my windshield…

So, our first week of summer has been filled with a few key medical appointments for Rudy and some fun too.  Cousin Josh (who is interning for Disney this summer) took time away from the “Happiest Place on Earth” to visit us for a couple of days.  Since we live so far away from both sides of our family, it’s always extra special when family visits.

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Fun with cousin Josh from Alabama!

Olivia’s 8th grade promotion celebration continued at church the following Sunday when the graduates from 6th grade, 8th grade, high school and college+ were recognized.  It’s still hard to wrap my brain around the fact that she’ll be in high school this fall.  🙂

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A big congratulations from Pastors Aaron and James. 🙂

We made two trips down to UCLA this past week.  Rudy had a thorough echo exam at the pediatric heart clinic last Thursday and had his check up at the pediatric dental clinic yesterday as well as a quick conference with Dr. Dan to discuss our plan for the summer.  The good news is that everyone involved in the discussions are in agreement.  Based on information from our bi-monthly appts with Dr. Harake here in SB and the echo results from our trips to the heart clinic at UCLA, there are signs (i.e. high hemoglobin levels, increase in tricuspid valve leakage, bluer lips & fingers in general, etc) that Rudy’s heart failure is progressing.  Everyone is in agreement that there is a need to take some stress off his heart and help it work more efficiently but the question remains whether or not the potential benefits of another open heart surgery are worth the risks.  As Dr. Dan put it yesterday, we could intervene and Rudy could do great and we’d be wondering why we didn’t do something sooner, or we could intervene and make things much worse.  Rudy’s condition may be worsening, but the concerns remain the same and I’m not sure if the pendulum has swung far enough to tip the scale in the opposite direction from where we are now.  Because there are SO MANY conflicting factors and SO MANY pieces to the big picture scenario that’ll be impossible to align “just right”, I’m trying to prepare my heart for the decision to move forward to be based more on faith than hard science…(note: not that this journey has EVER had “easy” hard science answers but one always hopes for it!)

Before making a decision to schedule an open heart intervention which could include a tricuspid valve repair, shunt replacement or modified Glenn, we need to get the cath scheduled…I’m still working to nail down a date.  The goals of this cath will be as they always are:  to measure all the pressures, possibly open up the existing Sano Shunt (controlled blood flow) and definitely coil more collaterals that continue to sprout like a roadmap (uncontrolled blood flow).

So here’s a quick recap of our day yesterday…

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Rudy’s view from the dentist’s chair!

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Rudy got a great report from the dental clinic! Good oral health feels like a major victory and we’ll take it! High Five Rudy!!!

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Next stop? Conference with Dr. Dan. Rudy was more interested in Dr. Dan’s badge than the computer keys. “Don’t let go Rudy!”

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Rudy’s heart on the big screen.

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Rudy the Rascal had the most fun snatching doctor badges as we talked.

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Once we were done with all the official business, the boys ditched the wheelchair and transported Rudy big brother style!

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We played a little elevator bingo…

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…and ran into nurse friends on break.

All in all, it was a productive day at UCLA and I look forward to getting the cath scheduled so I can piece together the rest of our summer.

Today our thoughts and prayers shift to Wilson as he prepares to leave for Fort Knox.  He leaves early tomorrow morning and will be gone for a month of ROTC cadet training.  We’re sure going to miss him around here but he’s excited. He’s a little nervous but knows he’ll be fine once he gets there.  ‘Praying for his safety and that it’s a good experience for him over all.

Thank you all for your continued prayers and encouragement.  God is good and gracious and loving and merciful and constant & my hope rests in Him…always…but especially when personal concerns swirl and thoughts of the broader concerns for our country and global community are on the forefront of my mind as well.  Love and blessings to you and yours dear friends!

 

 

 

 

Welcome Summer

June 8, 2016

Yay! Yay! Yay!  Today was Max, Olivia and Rudy’s last day of school and with that summer has officially arrived!  Rolf, Olivia, Rudy and I have an early departure for UCLA tomorrow morning so I’ll keep this brief but want to commemorate the day with a few fun pics…

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We enjoyed a fun visit with a good friend and Max’s godmother this week…Max shot up in height this year making him a whole head taller than Susie-Q!!!…

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…as are Wilson and Rolf! Ha ha

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Goofy Rudy!!

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Olivia’s promotion festivities began with a fun party at school on Tuesday…

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…and the 8th grade promotion ceremony on Wednesday!!!

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Dos Pueblos HIGH SCHOOL (Whaaaat?!?!) Class of 2020!

Because of Rudy’s trip to the heart clinic tomorrow, he had to say goodbye to his teachers and classmates today.  Mrs. Gallo’s class took time to send Rudy off with personal messages and Miss A caught it on video…so sweet!

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Happy Summer Rudy!!! With Miss A, Nurse Sara and the sibs!

Happy Summer to you too dear friends!!!  Let the fun begin!!!

Field Trip, Fun Trip

June 3, 2016

We’re finally down to the last few days of school and Rudy is finishing strong…he has had a string of really good days and is enjoying all the extra fun stuff this time of year.  Today was particularly fun.  Rudy and his classmates had a field trip to the Ty Warner (yeah, the beanie baby guy) Sea Center Museum on the pier in Santa Barbara.  Rudy typically doesn’t LOVE the chaos of field trips but he sure embraced today’s outing and had a blast.  It’s so fun to see how far he has come in situations like this…

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Rudy petting a shark at the sea center!

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Rudy had no fear of the tide pool creatures either!…

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…but the water was a little cold resulting in Rudy’s purple fingers! 😉

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Nurses Sara and Jessica in the shark cage with Rudy!!

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After visiting the sea center, Rudy’s class had a picnic at a nearby park and Rudy had some fun with Miss A on the climbing structure…

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All the kids got a popsicle AND…

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…a ride on the carousel with Mrs. Gallo!! I’m not sure it gets any better than that!

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Yay Room KB!!! It has been a great year.

Next week is Rudy’s last week of school but we found out yesterday that his heart clinic appt at UCLA was moved up from June 16th to June 9th so he’ll miss his last day of school.  We still have to go to UCLA on the 16th for Rudy’s appt at the pediatric dental clinic so we have some scenic driving to do up and down the coast in the next couple of weeks.  🙂  No word yet when Rudy’s cath will be…Dr. Harake’s office is still working to schedule it.

In the meantime, we have some fun 8th grade promotion celebrating to do with Olivia next week AND we suspect we’ll spend a lot of time at Kyle’s Kitchen this summer…Max was offered a job there this week as the newest member of their cashier team!  Woo Hoo!!!  ‘Super excited for him to have his first real job and praying there are some family perks that come with the job!  Ha Ha

Thank you for your prayers as we steam roll ahead toward a summer filled with familiar and new experiences for our family and lots of focus on Rudy’s medical needs.  Ever grateful!