Archive for December, 2013

Auld Lang Syne

December 31, 2013

As we say farewell to 2013, our family is also saying “farewell” to Rudy’s longtime nurse.  Nurse Dodi was assigned to Rudy’s case nearly 4 1/2 years ago shortly after we brought Rudy home from the hospital and after threatening to retire for awhile, she decided now is the time to scale back.  We appreciate Dodi’s sweet care of Rudy…she has been an important member of “Team Rudy”…she will be missed!  🙂

Nurse Dodi and Rudy in 2009

Nurse Dodi and Rudy in 2009

Birthday buddies in 2013!

Birthday buddies in 2013!

Rudy will miss his special playmate! ;)

Rudy will miss his special playmate! 😉

Thank you Dodi!!

It’s hard to believe that 2013 is coming to a quick close but we have a truckload of fun memories to take with us as we continue to live one day at a time and not try to anticipate what the new year will bring!  🙂  HOPE and LOVE to you all…Happy New Year dear friends!

Goodbye 2013…

Last minute Christmas preparation included cookie decorating…Wilson spent 20 minutes on one cookie!!

Last minute Christmas preparation included cookie decorating…Wilson spent 20 minutes on one cookie!!

His technique even involved tweezers...

His technique even involved tweezers…

Punisher Christmas Cookie??????

Punisher Christmas Cookie??????

Christmas morning 2013!

Christmas morning 2013!

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Rudy's gift from the folks at  Tiffany & Co!

Rudy’s gift from the folks at Tiffany & Co!

The 5th annual SBRM Turkey Bowling champs!!

The 5th annual SBRM Turkey Bowling champs!!

a little post-Christmas trip to the beach…ending 2013 with temps in the mid-70s…just sayin'.

a little post-Christmas trip to the beach with Gma Jo…ending 2013 with temps in the mid-70s…just sayin’.

 

 

 

 

 

 

 

 

Breaking News: Walking in a Winter(?) Wonderland!

December 24, 2013

A little Christmas Eve surprise here in balmy Santa Barbara…

December 24, 2013 is going down in the baby book!!!  We’re so excited!!  Merry Christmas to all and to all a good night!

Have Yourself A Merry Little Christmas

December 19, 2013
'Wishing you a joyful and FUN Christmas!

‘Wishing you a joyful and FUN Christmas!

We’re down to less than a week before Christmas…we still have the SBRM Homeless Feast,  a couple of special church services AND a trip or two to the store left to look forward to before the big day.  Grandma Jo arrived this week from Kansas and the kids are eager to start their Winter break..in the midst of it all, I’m filled with gratitude for the family and friends that surround our family. ‘Just wanted to stop and take a minute to tell you that you’re appreciated and dearly loved.

Heading off to see Santa at Stow House!

Heading off to see Santa at Stow House!

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When you visit the same Santa year after year, you get pretty friendly...

When you visit the same Santa year after year, you get pretty friendly…

…really friendly!

…really friendly!

Santa 2013

Santa 2013

SBRM Staff Christmas Party

SBRM Staff Christmas Party

Grandma Jo hit the ground running when she touched down…Christmas parties!  School performances! SBRM events…and more!  Ha Ha

Grandma Jo hit the ground running when she touched down…Christmas parties! School performances! SBRM events…and more! Ha Ha

The boys are getting a little cuckoo!!!  We're ready for winter vacation.

The boys are getting a little cuckoo!!! We’re ready for winter vacation.

A couple more favorites from the family photo sesh 2013….

A couple more favorites from the family photo sesh 2013….

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Have yourself a merry little Christmas!!!  Love, Rudy

Have yourself a merry little Christmas!!! Love, Rudy

 

 

 

 

 

 

 

 

Joy In The Journey

December 7, 2013

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!

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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!