Archive for July, 2015

Rudy’s Start to Summer

July 27, 2015
Rudy's last day of summer school with Nurse Viviana.

Rudy’s last day of summer school with Nurse Viviana.

Rudy finished up summer school last week…his teacher had nothing but great things to report.  He worked hard on his workbooks and various therapies and, of course, enjoyed adaptive PE with Coach Galvan.  He came home happy on the bus with nurse Viviana every day and looked forward to going back the next morning.  🙂  Sadly, his first full week of summer break coincides with the big kids heading off to camp…when we dropped them off this morning, Rudy asked over and over as they unloaded their luggage “where you going?”.  He would have jumped in the church van with them if he could.  Poor guy…

Saying "goodbye" to the big sibs...

Saying “goodbye” to the big sibs…

He may be a little lost without the big sibs this week but a quiet house will allow him to nap and get some good rest…and we have a couple of visits from good friends to look forward to!  🙂  Summer ROCKS!!!

Celebrating and Remembering

July 17, 2015
Rudy on the 4th of July....

Rudy on the 4th of July….

...at the SBRM Homeless Guest BBQ!

…at the SBRM Homeless Guest BBQ!

Having so much fun!!!

Having so much fun!!!

July is only 1/2 over but Rudy and the fam have had enough activity to fill the whole month…or two!  🙂  We enjoyed our annual 4th of July BBQ celebration at the rescue mission, we sent Max off to Kentucky for a very special week-long national youth conference with our church and the rest of us were blessed to host a couple of dinner parties for the 13 men and women who graduated from SBRMs residential treatment program on the 11th…and that was just the FIRST week of July!  Ha Ha

SBRM's two OGs!  Olivia Geyling and Olivia Goodin ;)

SBRM’s two OGs! Olivia Geyling and Olivia Goodin 😉

Tucked in between these special SBRM celebrations, we were honored to celebrate another very special couple to our family.  This wedding was particularly sweet as we are friends with BOTH families and we have had the privilege of watching Ryne and Miranda’s relationship grow from high school sweethearts to husband and wife.  Wilson was honored to be an usher in the wedding party and Olivia had an official role at the reception as well…so fun for them!

Wilson was the

The official “fifth wheel” picture…Wilson tagged along on many trips to 7/11 and In ‘n Out when Ryne and Miranda were first dating!! Ha ha Some things never change!!! 😉

Good Friends...Good Times!

Good Friends…Good Times!

Since Ryne is a car man, there was a strong

Since Ryne is a car man, there was a strong “car” presence at the reception of which Rudy very much approved!!!

Official Usher and Greeter!

Official Usher and Greeter!

Awesome reception fun!!!

Awesome reception fun!!!

Not a bad pic of the oldies!

Not a bad pic of the oldies!

Congratulations Ryne and Miranda!  Woo Hoo!

Congratulations Ryne and Miranda! Woo Hoo!

And all this fun led us right into VBS (Vacation Bible School)  week at church…another summer tradition we all look forward to.  Wilson led the worship team along with Max, Olivia was part of the teaching team for the Kindergarteners, Rolf creatively presented the bible story each night and I was on Rudy duty.  It’s a fun opportunity for us to partner together and have a ton of fun with our awesome community of friends at church.  It’s interesting to watch Rudy as the distinction between typical situations and special ed environments become more apparent for him…although he is making GREAT progress developmentally, the reality is that it is very difficult for him to navigate typical situations without a TON of support and it is painfully apparent at big kid activities like VBS.  It makes me so grateful for our sweet, loving and accommodating church family as well as the gifted special education staff in our school district who pour into our boy.  Speaking of school, Rudy has one more week of summer school…he has had such a great experience…he’ll miss it for sure but it will be nice to have a couple of unstructured weeks before we begin to prepare for the regular school year again.

Rudy the SUPER Scientist at SonSparks Lab!

Rudy the SUPER Scientist at SonSparks Lab!

A VBS selfie with Rudy and teacher Greg!

A VBS selfie with Rudy and teacher Greg!

Today is the last day of VBS and it also marks the fifth anniversary of my dad’s passing…how can it be his fifth year memorial?  With so many significant moments in the life of our family the past couple of months,  Dad has come to mind a lot and I’ve missed his presence.  As I watch the kids grow into independent, confident, interesting people, I am reminded of the last lucid conversation I had with my dad.  He had just found out that his brain cancer was not responding to treatment anymore and that the prognosis was terminal.  The first thing he said to me was that he was sorry he wasn’t going to have the opportunity to see my children grow up and be there for them.  I think it’s very sweet that of ALL the things he could have been concerned about in that very tender, vulnerable moment, his thoughts centered on family and somehow not finishing his “job”.  I’ve thought of that conversation often lately and how pleased Dad would have been to watch Wilson give his speech at graduation or to watch Olivia fearlessly swim with Dolphins in Hawaii or to see Max enthusiastically head off to Kentucky eager to grow in his faith and I think of it almost every day where Rudy is concerned…Because of Dad’s athletic achievements, I think he would have especially appreciated how far Rudy has come and would have celebrated his achievements in mobility with great enthusiasm…and I suspect he would have been in awe of how resilient Rudy is…demonstrating it over and over again when he meets routine trips to the cath lab with a smile, black-eye producing tumbles with a chuckle and monthly blood draws with barely a whimper.  😉

With Dad at the KU Hall of Fame...spring 2010

With Dad at the KU Hall of Fame…spring 2010

Grandpa Dick and

Grandpa Dick and “steroid” Rudy  (2010)

Sharing a great laugh!

Sharing a great laugh! (2010)

I think Grandpa Dick would be so proud!

Rudy 2015

I think Grandpa Dick would be so proud!  🙂

ALOOOOOOHA HAWAI’I!

July 3, 2015

We made it home from our special summer adventure in Hawaii and jumped right back into the work/summer school/therapy routine again.  It so easy to get swept up in the flurry of “to dos” so the challenge now is to hang on to a little of the laid-back aloha spirit and keep that spirit alive this summer whether we’re in a doctor’s office, working on a house project or shopping for groceries.  😉

We are so grateful!  We’ve never attempted a trip like this before.  Before Rudy was born, our vacation time was used to visit our parents back in Kansas and Texas.  Since Rudy’s birth, our summer vacations have been limited to small-scale road trip destinations within California with the exception of Rudy’s Wish Trip (organized by the Make-A-Wish Foundation) and a rented-RV trip to Kansas to see my dad in the last months of his battle with brain cancer.  With Wilson heading off to college and the dynamic of our family’s daily life changing in the months ahead, it seemed like the right time for a big family trip.

When Rolf and I started to brainstorm several months ago, we entertained the thought of finding care for Rudy at home allowing us a very different experience with just the big kids but when we ran the idea by the big sibs they quickly protested and said we couldn’t go without Rudy!  🙂  And so began the hard work of organizing logistics that fit Rudy’s special needs…ordering oxygen and enteral supplies for delivery on Oahu and Maui, renting vehicles big enough to haul Rudy’s wheelchair, getting the airline-required doctor letters of release for travel with O2 concentrator, gathering information on the hospitals near our accomodations, making sure the activities we signed up for were wheelchair accessible, etc,etc,etc.  None of it rocket science but definitely enough extra work in pre-planning that could cause one to think twice about going on such a trip.

Rolf and I had what we affectionately call “the honeymoon from hell” in Hawaii that we’ve wanted to redeem for a couple of decades now and our kids, Oma & Gma Jo have never been to Hawaii so we were all were pretty excited to experience new adventures and make some special memories together!!  Rolf did a great job of organizing an itinerary that included a few family outings, a special experience for each of the big kids and a good balance of down time at a condo right on the water.  Rudy’s body had a hard time adjusting to the heat and humidity of the islands so he spent a good bit of his time indoors initially which made our condo location ideal…allowing him to enjoy the beautiful view and the big sibs’ fun water play from the comfort of the air-conditioned condo!  🙂

We started our adventure with 3 days in Oahu where we visited the USS Arizona Memorial, where Olivia got to swim with dolphins and where the big boys got to go parasailing…

En route from LAX to Honolulu!

En route from LAX to Honolulu!

Vacation Roomies Gma Jo and Oma!

Vacation Roomies Gma Jo and Oma!

USS Arizona Memorial

USS Arizona Memorial

"Thumbs up" from Rudy

“Thumbs up” from Rudy

While at Pearl Harbor, Rolf and the big boys toured the  "Mighty Mo" aka USS Missouri.

While at Pearl Harbor, Rolf and the big boys toured the “Mighty Mo” aka USS Missouri.

Some good ol' fashioned sibling fun at the hotel pool...

Some good ol’ fashioned sibling fun in the hotel pool…

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Thanks to current "rubber sleeve" technology in cast covers, Rudy got to go swimming too!

Thanks to current “rubber sleeve” technology in cast covers, Rudy got to go swimming too!

...And this is pretty much the view of every picture he took with the underwater camera.  Ha Ha

…And this is pretty much the view of every picture he took with the underwater camera. Ha Ha

Bucket List Dolphin Swim?  Check!

Bucket List Dolphin Swim? Check!

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Rudy just couldn't stay awake long enough to watch Olivia's swim with the dolphins :(

Rudy just couldn’t stay awake long enough to watch Olivia swim with the dolphins 😦

Sea Life Park in Oahu...such a pretty locale.

Sea Life Park in Oahu…such a pretty locale.

We didn't get a picture of the boys parasailing but Wilson did capture Max getting blasted and almost swept to his death by this wave!

We didn’t get a picture of the boys parasailing but Wilson did capture Max getting blasted and almost swept away by this wave!

The gals enjoyed a lei-making class!

And the gals enjoyed a lei-making class!

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After a whirlwind three days in Waikiki, we packed up and flew to Maui where we planted some roots for a week…

Day 4 - Our flight over to Maui.

Day 4 – Our flight over to Maui.

Sadly, Olivia caught a fever and felt pretty awful on our travel day so she, Rolf and Rudy stayed home from the luau scheduled our first night in Maui :(.

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The big boys were good sports and participated in the "Keiki Hula" solely for a photo op!  Ha Ha

The big boys were good sports and participated in the “Keiki Hula” solely for a photo op! Ha Ha

Chillin' off the lanai...

Chillin’ off the lanai…

One of many beautiful sunsets from our condo...ah, lovely.

One of many beautiful sunsets from our condo…ah, lovely.

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Max the grill master.

Max the grill master.

Rolf's big treat was getting to step off the lanai and SUP anytime he wanted...thanks to a little El Nino, our side of the island enjoyed unusual swells this time of year.  Rolf was a happy camper!

Rolf’s big treat was getting to step off the lanai and SUP anytime he wanted…thanks to a little El Nino, our side of the island enjoyed unusual swells for this time of year. Rolf was a happy camper!

He also made arrangements with a local dude he met online to do a downwind run to Kihei...thankfully the guy was a legit SUPer or this could have been the last picture we have of Rolf.

He also made arrangements with a local dude he met online to do a downwind run to Kihei…thankfully the guy was a legit SUPer or this could have been the last picture we have of Rolf.

The road to Hana was a long and winding day trip but it definitely lived up to it’s reputation for being the most beautiful drive on the island!

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A last minute add on to the itinerary was a helicopter tour...Rudy and I hung back at the condo but the rest of the crew enjoyed this "once-in-a-lifetime" experience!

A last minute add on to the itinerary was a helicopter tour…Rudy and I hung back at the condo but the rest of the crew enjoyed this “once-in-a-lifetime” experience!

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Rudy's been working on "self care" in OT so while the others were out flying the friendly skies, I gave Rudy the tube of sunscreen and asked him to put it on...ha, ha!  Not bad Rudy!

Rudy’s been working on “self care” in OT so while the others were out flying the friendly skies, I gave Rudy the tube of sunscreen and asked him to put it on…ha, ha! Not bad Rudy!

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Although we played hard during the day, the evenings were reserved for hanging out on the lanai for impromptu ukulele concerts.

Although we played hard during the day, the evenings were reserved for hanging out on the lanai for impromptu ukulele concerts.

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Shhhh, I don't think we were supposed to sit on it but there was a carousel horse in the middle of our condo!

Shhhh, I don’t think we were supposed to sit on it but there was a carousel horse in the middle of our condo!

I LOVE pineapple bowls for some reason...I got a small one on our honeymoon and use it all the time...this one in our condo is the biggest one I've ever seen!  Ha

I LOVE pineapple bowls for some reason…I got a small one on our honeymoon and use it all the time…this one in our condo is the biggest one I’ve ever seen! Ha

There were a lot of activities Rudy couldn’t do on this trip but snorkeling wasn’t one of them…we took a family cruise out to Molokini and a sea turtle cove to snorkel and Rudy joined us on the second snorkel stop!

1st stop, Molokini crater…

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Then it was Rudy’s turn!!!!

Getting ready to launch!

Getting ready to launch!

One, two, three, GO!

One, two, three, GO!

Woo Hoo!!  Family snorkel pic!

Woo Hoo!! Family snorkel pic!

Olivia's underwater selfie.

Olivia’s underwater selfie.

Rudy loved his snorkel  float!

Rudy loved his snorkel float!

Rudy's view of the fish!

Rudy’s view of the fish!

The fish's view of Rudy.

The fish’s view of Rudy!

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Never thought our little half-heart would swim in the Pacific Ocean off the coast of Maui!

Never thought our little half-heart would swim in the Pacific Ocean off the coast of Maui!

Mother/Daughter

Mother/Daughter

Mother/Son

Mother/Son

Travel day back to the Mainland...Hawaiian Style!

Travel day back to the Mainland…Hawaiian Style!

We got to L.A. early Sunday morning and said goodbye to Oma at LAX where she caught a flight back home to Alabama.  Rudy started summer school at 7:45am the following morning…kind of a rude awakening for us but he was happy to see his friends   and Nurse Viviana again!  While Rudy was in school, Livy, Wilson and I took Gma Jo to the airport for her flight back to Kansas and after school, we all took Rudy to his ortho appt to get his cast removed!!  Keeping the spirit of the islands alive, we had an impromptu “castaway” party right there in the doctor’s office…

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“There ain’t no party like a ‘Castaway’ Party …..ooo, ooo, ooo!!”

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Tah-Dah!!!

Tah-Dah!!!

The next day we headed to Dr. Harake’s for Rudy’s routine check-up and Rudy was being “Mr. Helpful” during his echo exam…Steady, Rudy, steady!

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Rudy’s O2 sats were pretty low – low 70s – (he typically sats in the low 80s) so we’ll keep an eye on that as it could be a bad sign but everything else checked out okay.  No change in his heart size/function.  He was pretty tuckered out this week so I suspect it’ll take his body a few days to settle back to his normal baselines…I think we all may be experiencing a little vacation wear and tear, perhaps, but I think everyone would agree that our trip was well worth it!  🙂  Aloha Friends!