Times are certainly changing…Christmases were once spent assembling all the toys the kids got from Santa…this year the day was spent syncing and activating electronics!  🙂  Ha Ha  Rudy did get one toy that needed to be put together so the day wasn’t completely disorienting but a major shift has occurred indeed.  Ha  Rudy is still more interested in the wrapping paper than he is in the gift but he took great joy in scooting around on his little indoor “bike” through piles of wrapping paper and checking out what everyone else got from Santa.

Of course, our Christmas Day wouldn’t be complete without a trip to the Rescue Mission for Rolf’s annual Turkey Bowling Tournament with the residents.  We brought snacks and set up for this year’s extravaganza in the dining hall!  🙂  The competition was fierce as Rolf and the big kids joined in the bowling fun.  Rudy tolerated all the noise and commotion well with the help of his buddy Tom who sat with him and decorated Christmas cookies…so sweet!

It turns out that Rolf’s favorite Christmas present came from the pharmacy in the form of a little bottle stopper for Rudy’s Trileptal medication.  Now we can dispense this thick, sticky liquid medication straight from the bottle without having to first pour a little bit into a smaller cup to draw is up with the syringe (inevitably wasting a ton of medication) – genius.  Ah, the Costco pharmacist was definitely speaking Rolf’s love language this year and it will be the gift that keeps on giving multiple doses a day!  Not sure where they’ve been hiding those for the last four years…:)

Sadly, this Mama Elf didn’t quite get the sizing right on a couple of garments and we need to make a stop at the AT&T store so we are off to brave the “day after Christmas” crowds!  (yikes)  Luckily, this will include meeting up with Dad for lunch at the office…ho, ho, ho…the Christmas fun continues.  Love and hugs!

It’s exactly 12 midnight…Merry Christmas dear ones!  It’s hard to believe this day has come after so much preparation and anticipation. 🙂  The kids are all fast asleep after several checks on the NORAD Santa Tracker website (He’s currently in Colorado, by the way) and Rolf and I are getting ready to hit the hay ourselves.  We just couldn’t let this special day end before taking a minute to wish you all a very merry Christmas.  How grateful we are to be celebrating Christmas safely at home with all our children under one roof, snuggled sweetly in bed (well, actually, for Max, Olivia and Rudy it’s “snuggled sweetly on Livy’s floor for a Christmas slumber party”!).  We don’t take this scenario for granted at all but were also amazed at dinner tonight when Rolf asked the kids what their favorite Christmas memory is and all but one said the Christmas we spent in the hospital with Rudy.  Amazing!!  What a gift!  Olivia said it was her favorite because we were all together with Rudy…we all agreed that it was a particularly sacred Christmas for our family that helped shape in us a deeper awareness of what is truly worth celebrating on this day.

The reading of a Christmas devotional…

Time to open just ONE gift…

Wilson and Max “helped” us by getting Rudy ready for bed and into his new pajamas…uh, yeah, Rudy wasn’t too pleased!

Love and hugs from our home to yours…

Just like most households this time of year, ours has been filled with holiday preparations of all kinds and the extra special  activities continue this week with a Christmas celebration with Rolf’s staff, two school band performances and Christmas caroling with the Girl Scouts!  🙂  In the midst of all the fun leading up to Christmas, we also received our hard travel dates and flight information from the Make A Wish Foundation.  We’ll be traveling to “Give Kids The World” on January 17th and returning to CA on the 25th!  Olivia promptly made a calendar to help us keep track of the number of days until we leave…and put it right next to our countdown to Christmas.  Ha Ha  This is truly a season of meaningful anticipation for our family as we prepare to celebrate the coming of Christ and anticipate this once-in-a-lifetime trip that we hope will be a profound shared experience filled with long lasting memories.  🙂

Some have asked if there is any new information about Rudy’s condition and I don’t have any specific updates…we don’t see Dr. Harake (cardiologist) until the week after Christmas and we don’t follow up with Dr. Shapiro (ENT) until after the new year…we’re supposed to see her in January but we may push that back to early February now that we have our travel dates for FL.  In general, though, Rudy is doing great.  His trach stoma is healing nicely but not completely closed as this could take several months.  He plays hard, sleeps hard and is generally happy as long as he doesn’t feel like he’s getting left behind when the rest of the household is buzzing to and from all their varied activities.  🙂  He seems to have developed a new fascination with the toilet which may be an indication he’s ready to start potty training!  He was quite proud of his new “big boy” toilet seat attachment and was happy to sit for awhile once he realized he could, indeed, balance there on his own.

Three days later he amazed us with his determination to carry, kick and throw THREE avocados while he bottom scooted from the kitchen to the kids’ bathroom in just one trip for some toilet fun!  ‘Looks like it’s time to keep the bathroom door closed!! Ha Ha

Rudy’s calendar was full this weekend with a variety of special events like his classroom party on Friday…

Happy to see Teacher Christy again who came for a special visit!

…cheering on Max’s hockey game at the championship game before it got rained out…

…decorating cookies with Olivia and friends…

…and, my personal favorite, Christmas at Stow House!

Of course, in the wake of Friday’s tragedy in CT and the loss of so many healthy, vibrant  young lives, we cherish and hold close these moments even more as well as pray with new vigor for those engaged in life and death battles around us.  Our hearts were deeply burdened to find out last night that our little friend Daisy has taken a turn for the worse in her battle against cancer…here’s the latest.  In addition, four of our dear friends who are a part of the Rudy’s Beat community are also in serious cancer battles and we  ask you to please stop for a moment and pray for Daisy, Bryan, Kenon, Bob and Jen – each one so dear to us and each one so full of faith and grace  in their journeys.  Rudy’s milestones are significant because they arise out of the pitched battle he is in.  Our hearts are intertwined with people engaged in similar struggles.  We hurt when they hurt, but our lives are richer because of their friendships…thank you, dear friends, for helping us envelop them in prayer!

God bless you friends…God bless the community of Newtown, CT…God bless those in a battle for health…God grant us all peace!

Last month we had the pleasure of a visit from Nick and Jeni Busta…you may remember that we first met this sweet couple at the Heart Walk back in September and had hoped for a chance to follow up with them.  Jeni is a HLHS survivor and spends a great deal of her time encouraging and supporting CHD families.  It was fascinating and extremely helpful for me to talk with someone who is able to articulate the challenges that accompany HLHS…I’ve wondered many times if there are unseen side effects for Rudy related to his HLHS that he is unable to tell us about.  Jeni confirmed that there is, indeed, the potential for chronic back pain and chest pain as these are things she battles each day.  I appreciated her candor and honesty in sharing about her experiences growing up…the things she wishes now she had (i.e. certain types of therapy) and the choices she’s grateful were made along the way.  Although I know each journey with HLHS is a very different path, it was encouraging to talk with an adult survivor who knows firsthand what Rudy is going through.  Talking with Jeni also reminded me that as much as we try to treat Rudy like a “normal” kid and encourage him to do all he is motivated to try, he has limitations that will frustrate him and he’ll need to be encouraged through them whether those limitations are temporary or permanent.

Olivia was particularly affected by Jeni’s stories of being bullied in school when she was young and I know she’s been thinking about them since.  Just a few days ago, Livy and I were in the kitchen when Dean Martin’s version of “Rudolph the Red-nosed Reindeer” came on the radio.  When Deano sang “Rudy the red-nosed reindeer”, we laughed and said “Hey, it’s Rudy’s song”.  A couple of minutes later, Olivia asked “I wonder if what happens in that song will happen to Rudy?…I wonder if Rudy will be made fun of and bullied for his disability but then be asked to do something really special and important and then he’ll be a hero?”  Sweet girl…I love the way she thinks and her sensitivity toward Rudy. There is a lot to ponder in that question but I think we’re all a lot like Rudolph…we all have things that could be considered a flaw or disability that God desires to use for a special purpose.  When we live out that purpose, we become a hero to those we serve and, more importantly, God’s plans are accomplished through us!  Jeni is certainly a hero to many as are Rudy and the big sibs to me.  I pray that we’ll recognize God’s purpose in our weaknesses, that many heroic acts will fill this holiday season and that God will be glorified in it all!  ‘So grateful today for the many lessons we’re learning along the way.

Of course, God gifts us with amazing strengths as well and I’m so glad our friend CeCe (and Rudy’s God-sister ;- ))blessed us with one of hers…look what she painted for Rudy for his birthday!  I love her interpretation of Rudy’s Heart filled with such color and life!  Thank you CeCe…keep up the great work young friend!  If Rudy’s Beat were a book, this would be my choice for the cover!!  Ha 🙂

So Thanksgiving is already a distant memory having occurred a whole week ago and the shopping frenzies of Black Friday and Cyber Monday are already left in a big plume of dust!  The Christmas countdown is in full swing and the holiday will be here in a blink of an eye!!  Usually I’m one to stay ahead of the pack when it comes to anticipating and celebrating Christmas…I LOVE Christmas and want to soak it all up…every moment….every cheesy store-inspired tradition…every sacred experience the holiday holds for me as I reflect on the birth of my Savior.  I’d pull out the tree and decorate the house in early November if I could and kind of combine the whole holiday season into one big “ThanksChristmas” extravaganza!!!

But it feels different this year for some reason…I haven’t put my finger on it but I haven’t wanted to take our few Thanksgiving decorations down yet…I’ve wanted to linger a bit more in this season of thanksgiving, linger a bit more in those moments when something catches me eye and I try to take a snapshot of it in my mind, linger a bit more in stillness and peace.  I pray you had a wonderful Thanksgiving celebration and the spirit of that day lingers throughout your whole holiday season as well!

We enjoyed celebrating Thanksgiving with family this year…celebrating a holiday with family doesn’t happen very often for us with both of our families living so far away so we soaked up time with the Boston cousins over the long holiday weekend.  Rudy, of course, loved all the attention and cried pretty much non-stop when everyone left for an outing he couldn’t join in on!  🙂  He’s so aware and soooooo wants to be included in what the big kids do.  🙂

Rudy’s doing well, though, and has remained healthy so far since the cooler weather of a Santa Barbara winter rolled in.  After the slew of over a dozen doctor/ER/UCLA visits in October, he’s gotten a break from doctor appointments this month and we’ve appreciated the reprieve.  We have a handful coming up in December but they are all routine appointments so hopefully Rudy’s health will remain stable in the next few weeks of (more than usual) activities…we need to pace ourselves as we get closer to our Wish trip in January!!!

Here’s a little Thanksgiving photo recap…

 

 

 

 

Okay, so my favorite Thanksgiving memory of 2012 will go down in the books as the serenade Rudy got at the SBRM feast…Rudy, Max and I spent the day hanging out in the courtyard talking with the homeless guests as they waited to be seated for lunch and there were two gentlemen in particular who were eager to sit down and spin a mile-long yarn!  🙂  At one point, one of them asked me what Rudy’s name was and as soon as I said “Rudy”, they broke out simultaneously into a loud and somewhat off key rendition of “Rudolph the Red-nosed Reindeer”. Rudy’s enthusiastic response encouraged them to sing even louder!  The expression on his face was similar to the picture below…total joy and acceptance.  The scenario was annoying to more than a few people standing around us but for Rudy and the two men who serenaded him, it was a highlight of the day.  🙂

Thank you friends!  Thanks for being the special individuals you all are and for sharing yourselves with us!  Thank you for your prayers and for your concern when we go longer than usual in posting an update.  Thank you for sharing in our love for Rudy and for your friendship to our family.  We all have so much to be thankful for…and I want to linger on those thoughts…always!  Blessings to you today.

 

 

 

 

 

 

 

 

Rolf and I enjoyed a rare gift of getting away for 4 nights this past week in Vegas for our 20th anniversary.  We’ve NEVER been very good at carving out this kind of time together and even less so since Rudy was born but Rolf was inspired by a killer deal on Groupon a few months ago and went for it to celebrate this milestone!  We laughed throughout our Vegas adventure as it’s clear we’re not really “Vegas” people…we’re not big drinkers or big gamblers and it felt like we had huge neon “nerd” arrows hanging over our heads the whole time…BUT we did what we do best and found fun!  We ate our fill, took in a few GREAT shows and won a whopping $30 jackpot at the quarter slots!!!  Most of all we enjoyed days where we got up with no agenda and let the day take us where it wanted us to go…no thinking through if a venue was wheelchair accessible, no making sure we had the necessary enteral supplies, oxygen tanks or meds, etc.  Of course, we thought of the kids non-stop and lamented the fact they weren’t with us every time we saw something we knew they would flip out over (David Copperfield or Cirque du Soliel) but they had a fun visit with Oma at home and Rudy was well taken care of between Oma (a retired RN) and his nurses.

And now, here it is Thanksgiving week (how is this possible?)!!  We’ll take time to write a proper Thanksgiving post later this week but to get a jump start on the theme of gratitude, here’s a little peek at an article by Becky Still that was published in the Fuller Alumni News this week.  Becky interviewed Rolf a couple of weeks ago and we’re so grateful for her effort and the thoughtfully told article that resulted.  We are honored and blessed by her interest in our journey… Alumni in Action Article

We are honored and blessed by your interest in our journey too…thank you for being a BIG part of this journey and for the prayers that have carried us from day one!

Joyful Thanksgiving preparations everyone…:)

Okay, we’ve been boring people on Facebook ALL DAY with campy wedding status updates in celebration of our 20th anniversary so I won’t post much on Rudy’s Beat tonight but we can’t let the day pass without mentioning the special celebration today holds for me and Rolf.  It has been a fun day of reminiscing and reflection over all that has transpired in the last two decades.  We certainly couldn’t have imagined all the “points of interest” in this journey of ours that have led us to where we are today…settled in Santa Barbara with our precious family of four – but there is little I would change if we had it to do all over again.   Each bend, each twist, each adjustment we have faced in our life together has drawn us closer to each other and more dependent on God whose presence has been our hope and our strength.  Here’s hoping for 20 more!

The icing on top of the wedding cake came in the form of a confirmation letter from “Make-a-Wish” yesterday granting Rudy a special visit to “Give Kids The World”!!!!  It’s official…we’re headed to Florida in January!  Yay!!!!  How very humbled and grateful we are…

 

 

Halloween has always been a fun time in our household but because it was our first holiday in the hospital with Rudy, the significance of celebrating Halloween together under one roof is not lost on me…the memories of that season are still so vivid!

We are so grateful for how far we’ve all come since then…today’s celebration included the traditional La Patera Hat & Mask Parade and, of course, trick or treating!  Happy Halloween dear friends…and so starts the fabulous season of holidays!!!  Yippy!

 

Much to my delight, it didn’t take much coaxing to get Rolf and the big boys to go to the pumpkin patch with me, Olivia and Rudy Thursday afternoon!  Our local Lane Farms pumpkin patch has got to be the sweetest patch around…complete with a corn maze, hay ride and pot-belly pig!  A trip to Lane Farms is a fun fall tradition and it pleased this mama’s heart to have the whole family join in the fun…

 

 

 

 

 

 

So we saw Dr. Harake today and Rudy’s heart looks about the same as last month…the leakage is still mild to moderate and the enlargement of the right atrium and ventricle remains the same.  The plan for now is to sit tight, keep Rudy healthy this winter, pray his heart remains strong (essentially what we have been doing for the past two years)…and revisit the decision to pursue the Glenn in a year or so.  Dr. Harake didn’t even mention a timeline for his next heart cath which I think is a good thing…it would be real nice to give him a procedure-free season for a bit, if we can…and continue to embrace each day as it comes.    Happy Harvest dear ones!

The Wonder Boy really hasn’t skipped a beat (no pun intended) since losing the trach last week…his stoma is considerably smaller and healing nicely so far.  We keep it covered with a bandaid and he doesn’t mess with it at all.  It’s amazing to watch him move more freely and I see (or should I say, “hear”) noticeable improvement in his ability to articulate consonants.  He’s a little chatter box!

Laying low at home for a few days served Rudy well, but it didn’t really end up being a quiet week for the rest of us.  A string of unexpected things kept us on our toes and kept me OUT of my shop – not any jewelry making going on this week!!!  I’m hoping I can carve out that holiday prep time next week – if I were superstitious, I’d be knocking on wood right about now!

Speaking of the unexpected, we’ve had a couple of unexpected good-byes this week…Rudy’s endocrinologist, Dr. Lifshitz, announced his retirement and it just so happened that we had our routine appointment scheduled with him already…so, Wednesday’s appointment turned out to be our last with him.  Thankfully, we are blessed with 2 other pediatric endocrinologists in town so I’m certain Rudy will be in good hands but it’s hard to say goodbye to a key member of “Team Rudy”.  Dr. Lifshitz, who manages Rudy’s hyperthyroidism, has been one of our more vocal cheerleaders…always affirming and always good for a reassuring pat on the back.  I will miss him and his office assistant Kim!

We also got word on Monday that Rudy’s school nurse, Evelyn, was reassigned to another school and so Rudy will be getting a new nurse!  We’ve been blessed with one great nurse after another so I expect Rudy’s new nurse will be no different but it is still hard to say goodbye to “a good fit”.  Evelyn was wonderful with Rudy and we’ll miss her sweet, tender care.  One of the interesting dynamics to my life with Rudy is that I feel like the members of “Team Rudy” (like his nurses, therapists, doctors and the office managers/staff of all the doctors offices we frequent each month) are my primary social community since I see them more than anyone else so when someone leaves, I really feel it much more than I should.  (Ok, that sounds a bit pathetic but it’s true!)

 

 

 

 

 

 

We have an appointment with Dr. Harake tomorrow (Friday) afternoon and Rudy & I head back down to UCLA on Monday for an appointment with Dr. Woo (pulmonologist).  I don’t imagine there will be much to report but it will be good to check in with both docs post-decannulation.    Thank you for praying for Rudy’s adjustment…we couldn’t be more proud of him and the big sibs…they’ve all weathered the past couple of weeks well.  Sleep tight dear friends!