Joy In The Journey

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Heart Update:  Rudy saw Dr. Harake this week for his routine cardiology appt.  I’m always eager to touch base with Dr. Harake and find out where we stand.  The echo this month shows a bit of an increase in Rudy’s heart size.  Enlargement of the heart is expected in HLHS patients.  Rudy’s little half a heart is not capable of pumping the blood his body needs effectively so over time it will get bigger and will ultimately lead to heart failure.  Surgical interventions (i.e. the Glenn and Fontan) help alleviate some of this pressure on the heart and slow down its enlargement but it’s a side effect that we’ll always need to keep a close eye on whether Rudy is able to have future surgical treatments or not.  The notable change in Rudy’s heart size is concerning but Dr. Harake’s response was calm and matter of fact.  He would like us to make an appt. with Dr. Alejos (who directs the pediatric heart transplant program at UCLA) to simply touch base and discuss options, if any, Rudy might have.  We talked to members of Dr. Alejos’ team at the heart clinic back in May but we have yet to talk to Dr. Alejos directly which Dr. Harake would like to see happen so we’ll follow up on that before our next cardiology appt in February.  The change in heart size is not severe enough that we need to act quickly but a reminder that we do need to be actively thinking about our next step should Rudy’s condition decline.

Even the slightest change in Rudy’s status can cause our hearts to sink and send us into a bit of an emotional tailspin but the reality is that this is just an extension of the path Rudy has been on for 5 years…nothing new, nothing we weren’t warned about.

It all just makes the joys in this journey even sweeter…honestly.  One of the greatest joys in our journey with Rudy has been the amazing people with whom we share similar paths.  Because of everyone’s complicated lives and the distance between many of us, much of our communication with other heart families is via FB or email but once in awhile we get the great joy of hanging out in person and we got to do just that with one of our favorite heart heroes last weekend when we were up in San Jose.  The Nelson family was kind enough to take time out of their holiday weekend to spend a day with us and we soaked up sweet time with Moriah, her parents, little brother and brand new baby sister!!  Honestly, Moriah’s smile when I said “hi” to her filled my whole being and I felt I was walking on holy ground when she and Rudy interacted…they are sweet buddies and I’m so grateful for the little visits we’ve gotten to share with Justin, Victoria and their precious family.

Love this family!

Love this family!

A bunch-a-trouble-makers!

A bunch-a-trouble-makers!

Olivia holding brand new baby Olivia!!

Olivia holding brand new baby Olivia!!

Heart buddies

Heart buddies

a little Rudy love...

a little Rudy love…

a little Moriah love...

a little Moriah love…

Sweet hearts…literally!

Holy Ground Moments

Kids these days!

Kids these days!

We sure packed our 2 1/2 days in the Bay Area full of fun activities and friends who we haven’t seen in a very long time…all of which was good for our souls!  Happy December friends…Wishing you all joy, joy, joy!!!!

a quick trip to Chinatown in SF...

A quick trip to Chinatown in SF…

Taking in the all the Holiday hoopla at Macy's

Taking in all the holiday hoopla at Macy’s

Pizza on a curb…yum!

Pizza on a crowded curb…yum!

No trip to SF is complete without a visit to our bridge…and a little walk down memory lane!

No trip to SF is complete without a visit to our bridge…and a little walk down memory lane!

Rolf proposed on the top of THIS Golden Gate Bridge tower...

Rolf proposed on the top of THIS Golden Gate Bridge tower…

The door of destiny!

The door of destiny!

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A band of brothers walking on a bridge!

A band of brothers walking on a bridge!

IMG_1163

Max and Livy at the Stanford/Notre Dame game with our god-daughter Maya and her sister Sarah…Fear the Tree!!

Max and Livy at the Stanford/Notre Dame game with our god-daughter Maya and her sister Sarah…Fear the Tree!!

Wilson, Rudy and I stole away to Novato for a little Eusebio fix!

Wilson, Rudy and I stole away to Novato for a little Eusebio fix!

It all culminated with a lot of laughter with the Lynches!!   We are blessed!

It all culminated with a lot of laughter with the Lynches!! We are blessed!


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6 Responses to “Joy In The Journey”

  1. Oma + Opa Says:

    Love and blessings AND sunshine
    AND may Stanford beat Arizona GO trees

  2. Grace Niklasson VanNortwick Says:

    Complete with the bridge!!! A bit of a sobering post, but yes….the season is sweeter knowing you can enjoy every single day to the limit! Love yous!

  3. Grandma Jo Says:

    You ALL are my sunshine! That was a nostalgic visit to the place it all began. The event that happened on the Golden Gate bridge has led to the famliy we cherish today. Eternal love to all………

  4. Diana Trautwein Says:

    My goodness, what a wonderful set of pictures! Thanks so much for sharing such loveliness with all of us. I thank God for your family so often, for the ways in which God has used Rudy’s illness to weave something beautiful among you all. I know there is always this tinge of sadness and anxiety – but looking back from here to there, when all of this started? All I see is glory. No.Matter.What.

  5. Jo Saraceno Says:

    Ah…joy to my heart! something sweet before I hit the sack! I love the Geyling family!! Jo Saraceno

  6. Jen Z Says:

    What wonderful pictures! Love feeling like we can be a regular part of the Geylings’ life, even though we are far. Hope to see you in December perhaps?!

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