Archive for September, 2015

A Changing of the Guard

September 28, 2015

Rudy’s “Birthday Week” began this morning with a big and bittersweet transition…school nurse change.  Nurse Viviana has accepted another great position within the school district and today, sadly, was her last day with Rudy.  We are so grateful to Viviana for her attentive and tender care of our boy and I know she will be missed by all in room KB but we are also very excited for her and the new opportunities she’ll have in her new role as a school nurse.  So, Viviana leaving is the bitter part but there is also a sweet side to this transition as Nurse Sara is returning!  This is definitely a pleasant surprise and we are thankful that her return coincides with Viviana’s departure making this a smoother transition for Rudy.  🙂  Woo Hoo!  Welcome Back Sara!!

Rudy's double whammy dream team today!

Rudy’s double whammy dream team today!

Thank you Viviana.

Thank you Viviana.

We enjoyed another great SB Heart Walk event on Saturday.  It’s always such a great time to connect with others in our community affected by heart disease one way or another.  We appreciated Rudy’s teacher, Miss A., and Nurse Viviana joining us for the morning and were surprised by one of Rudy’s CTICU nurses from UCLA!!  What a fun encouragement.  We definitely missed Wilson but thanks to technology, he was present via FaceTime for a few minutes!  🙂  Here’s a little sneak peak into our fun…

Rudy surrounded by Miss A., Max, Nurse Viviana, Olivia and CTICU Nurse Sarah E.!!

Rudy surrounded by Miss A., Max, Nurse Viviana, Olivia and CTICU Nurse Sarah E.!!

A quick photo op with Rudy's cardiologist and his wife at the opening ceremony! Woo Hoo! Love to the Harakes!

A quick photo op with Rudy’s cardiologist and his wife at the opening ceremony! Woo Hoo!  We love the Harakes!

Wilson FaceTiming with the DPHS drum line.  Next best thing to being there.  :)

Wilson FaceTiming with the DPHS drum line. Next best thing to being there. 🙂

Rudy was, once again, unwilling to

Rudy was, once again, unwilling to “walk on demand” at the start of the event…

...even Miss A. tried hard to coax him to cooperate...

…even Miss A. tried hard to coax him to cooperate…

...but, alas, he was the last man standing at the starting line! Ha Ha

…but, alas, he was the last man standing at the starting line! Ha Ha

'Love these kids and their willingness to not only participate but help make the Heart Walk FUN!!!

‘Love these kids and their willingness to not only participate but help make the Heart Walk FUN!!!

Looking forward to Rudy’s actual birthday on Thursday!  Fun! Fun!

Birthdays and Camp

September 22, 2015

The celebrations continue in the Geyling household…it’s hard to believe that Rudy’s SEVENTH birthday is just a week away and with every birthday, there comes a deepening of gratitude that is difficult to put into words…honestly.  As a caregiver of someone with special needs, I find it takes a concerted effort and, at times, a daily choice to battle entitlement over certain things and services I think we should have as well as not take any of what we do have for granted.  Like everything else, it’s a constant balancing act to keep it all in proper perspective.  Birthdays are no different…none of us are entitled to our next birthday and, therefore, the addition of another candle on the cake shouldn’t be taken for granted either.  In Rudy’s case, the simple milestone of a birthday is less about looking ahead at all the future promise of the new birth year (as birthdays seem to be for my big kids) and is more about looking back at all that has happened in the years leading up to his big day…and being profoundly grateful.  🙂

It has become our family’s tradition to celebrate Rudy’s birthday by helping to raise awareness of Congenital Heart Defects (CHD) and funds to support organizations that help kids like Rudy. “Team Rudy” has raised over $50,000 since 2010 for the American Heart Association alone!  Amazing!  We are still very much behind the work of the AHA and look forward to continued partnership with our local AHA office staff but we are shifting our fundraising focus this year to Camp del Corazon – an organization that we have supported personally for the past 7 years.

Camp del Corazon is a non-profit organization that provides year-round experiential opportunities for children (ages 7-17) faced with the challenges of growing up and living with heart disease. All of its programs are offered to participants free-of-charge and are supervised by a volunteer staff which includes certified RN’s and physicians (many of whom are Rudy’s doctors and nurses at UCLA). It’s primary summer camp is located on Catalina Island, 22 miles off the California coastline. Children from all over the country who go to camp get to experience a “typical” week at summer camp (not available to heart kids in a traditional camp situation) that includes ocean fun, camp fire silliness and cabin shenanigans …a camp environment made safe with a CardioThoracic Unit set up onsite for observation and care of the campers! When the camp started in 1995, it served just 49 campers. Since then, the camp has expanded to serve 300+ campers annually and is looking to add to that number each year.

We know many of the volunteer medical staff and some campers personally and have seen first hand the good that this organization is doing. Camp del Corazon doesn’t just give kids a summer camp experience…it provides support on so many levels…creating community, building confidence and opening up the possibilities of a much bigger world to a group of kids who often feel isolated and different.

We have chosen to highlight Camp del Corazon this year because this is a BIG year for Rudy…as he hits the 7 yr milestone, he becomes eligible to be a camper! Many have asked in the past for an opportunity to give to an organization that will benefit Rudy directly and this is that opportunity!! We look forward to sharing with you Rudy’s extraordinary camp experiences in the years to come!! 🙂

We hope to walk in the CdC Reunion 5K Walk/Run on October 24th in North Hollywood.  We invite you to join our fundraising efforts for this event if this is of interest to you but, as always, we don’t want you to feel ANY obligation to donate.  Please take a minute to learn more about Camp del Corazon at www.campdelcorazon.org or click the link below to find our family’s fundraising page:
http://www.firstgiving.com/fundraiser/trish-geyling/2015familyfestival
(If you prefer to not donate online, we are happy to accept cash or check donations that we can turn in personally at the walk. Feel free to mail donations to us at 6250 Avenida Gorrion, Goleta, CA 93117)

Thank you for your generosity in the past and thank you for following our journey with Rudy all these years!! Honestly, when Nurse Faye bounced into our CTICU room shortly after Rudy was born and enthusiastically told us about Camp del Corazon and how Rudy would get to go some day, I had a hard time envisioning that day and now here we are!!  This is an exciting season for Rudy and we embrace each day for the gift that it is!!!

P.S. A BIG THANK YOU for those who have already donated!!  To date, we have raised $2870.00 of our $5000.00 goal!!!  Woo Hoo!!!  For those who choose to donate, keep an eye out for the traditional thank you from our family via snail mail! Ha Ha 🙂

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Much To Celebrate!

September 20, 2015

The adjustment to Wilson being away at school continues but we haven’t had much time to be sad as there has been much to celebrate in the past two weeks…

our girl turned the big 1-3 last week…

LOVE this soccer playing, cross country running, DIY project making, nurturing and God loving goofball!!

LOVE this soccer playing, cross country running, DIY project making, nurturing and God loving goofball!!

…Rolf spoke at Westmont College…click here for the link to the video recording.

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…and we concluded our summer o’ weddings this past weekend with the wedding of our goddaughter Maya in Santa Rosa!  😉

Woo Hoo!

Woo Hoo!

Congratulations Maya and Rob!!! P.S. This picture was taken the moment Maya heard Stanford beat USC! Ha

Congratulations Maya and Rob!!! P.S. This picture was taken the moment Maya heard Stanford beat USC! Ha

Rudy dancing with the groom!

Rudy dancing with the groom!

Rudy getting acquainted with the bride's brand new niece...Baby Evie!

Rudy getting acquainted with the bride’s brand new niece…Baby Evie!

Rudy the Baby Whisperer

Rudy the Baby Whisperer

It's only fitting we stopped quick enough to take a pic of the Golden Gate Bridge on our way home from celebrating with the DiRados...Maya's dad was the best man at our wedding and Maya's mom was the one to suggest Rolf propose to me on top of the GGB! Ha ha

It’s only fitting we stopped to take a quick pic of the Golden Gate Bridge on our way home from celebrating with the DiRados…Maya’s dad was the best man at our wedding and Maya’s mom was the one to suggest Rolf propose to me on top of the GGB! Ha ha

Right there on the tippy, tippy top of the south tower!!!

Right there on the tippy, tippy top of the south tower!!!

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It definitely does my heart good to get out of my world from time to time and connect face to face with dear friends from long ago…not only is it refreshing but it helps put things I’m dealing with in perspective a little bit.  I think when you are living with a chronic illness or long term stressful situation, it’s easy to forget what life was like (what YOU were like) before the challenges.  It’s especially true for me in Santa Barbara.  Because Rudy was born within a year of our family moving to SB, our community here doesn’t really know our family BR (Before Rudy) and I’m not really known apart from being a wife and mother…especially as it relates to Rudy.  It’s not a bad thing particularly just more evident to me after nostalgic getaways like the quick trip up north we had this weekend.  It’s both fun and sad to be reminded of simpler times.

We also had Rudy’s Back-to-School Night this past week.  We continue to be blessed by his positive attitude toward school.  Thanks to Nurse Viviana, we get to catch a glimpse into his day from time to time…

Rudy listening in circle time

Rudy listening in circle time

Sorting fun

Sorting fun

Rudy helping a classmate during a transition. ;)

Rudy helping a classmate during a transition. 😉

Rudy's

Rudy’s “All About Me” Poem.

Miss A. has noticed a surge in Rudy’s capacity to learn and in his eagerness to learn since school has resumed…he’s made so much progress that she is recommending his IEP meeting be moved up to October sometime to update his goals!  This is an encouragement for sure and definitely worthy of adding to the list of things to celebrate!  🙂

New Seasons, Fresh Starts

September 8, 2015

Our household is a little quieter this week with Wilson gone.  He and Rolf loaded up the truck and headed for Azusa Pacific University early Friday morning.  They participated in a full weekend of activities and seminars for incoming students & their parents.  The rest of us Geylings arrived at APU early on Sunday in time to attend the final assembly, grab some lunch with friends and check out Wilson’s room.  It was definitely hard to say goodbye and leave our big boy behind but I think it’s really important to recognize that this is not only a new season for Wilson but for the rest of our family as well.  The change in dynamics, shift in focus, moving around of furniture…it’s all an adjustment for this mama’s achy heart for sure but I’m also excited to see what this next season will mean for Max and Olivia and Rudy.  I’m praying for fresh vision for all SIX of us as we embrace where we are individually and what lies before us as a family.

The most obvious changes are in Rudy's world...once we got Wilson's stuff all packed up or stored away, he helped me set up Rudy's half of the room!! Rudy LOVES it...so fun!

The most obvious changes are in Rudy’s world…once we got Wilson’s stuff all packed up or stored away, he helped me set up Rudy’s half of the room!! Rudy LOVES it…so fun!

Our last dinner was Wilson's choice...SB local favorite FREEBIRDS!!!!

Our last dinner was Wilson’s choice…SB local favorite FREEBIRDS!!!!

Wilson teaching Rudy how to Face Time.

Wilson teaching Rudy how to Face Time.

“Hi Wilthun!”

Early Morning Departure

Early Morning Departure

Woo Hoo! Go Cougars!!

Woo Hoo! Go Cougars!!

Bros checking out the dorm room!!

Bros checking out the dorm room!!

Icing on top of this amazing cake is the opportunity to reconnect with dear friends from long ago...Watch out APU! The Geylings and the Walkers are in da house!!

The icing on top of this amazing cake is the opportunity to reconnect with dear friends from long ago…Watch out APU! The Geylings and the Walkers are in da house!!

Part of the Walkers and Geylings in 2007! :) Hee Hee

Part of the Walkers and Geylings in 2007! 🙂 Hee Hee

One last big sib squeeze in the van's spacious back seat!

One last big sib squeeze in the van’s spacious back seat!

One last big squeeze of another kind. :)

One last big squeeze of another kind. 🙂

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Bye, Bye Big Guy!

Bye, Bye Big Guy!

Comfort food!

Comfort food!

Medical Update:

In addition to all the activity last week, Rudy had his routine cardiology appt with Dr. Harake.  His echo exam revealed no new changes…for better or worse.  As a result, there is no plan to schedule a heart cath this fall which is nice.  There will be a need to go in and coil some more collateral vessels (blood vessel branches that form to accommodate insufficient circulation) at some point but for now Rudy can enjoy a procedure-free fall.  The big news is that Rudy weighed in at 45 pounds!!!  He has been lingering around 40lbs (give or take a pound) for over two years!  His weight gain and height growth are encouraging and I’m eager to hear what his Gastroenterologist and Endocrinologist have to say about it when we see them later this fall.

Speaking of fall,  I’m definitely ready for fall to arrive as we gear up for another major heat wave here in SB this week!  There are some season changes that can’t come quick enough for me!  Ha Ha

Happy September Everybody!!