It’s hard to believe we flew home from Florida a week ago today!  As expected, we jumped right back into the routine of work, school, housework and I’m still trying to get everything unpacked and put away. 🙂  We’re also still processing our thoughts about our time away so be on the lookout for a recap post soon but in the meantime we wanted to shout out a big, fat thank you for the blessing that unfolded yesterday…

We are now the proud and joyful owners of the InogenOne portable oxygen concentrator!  We were totally blown away by the unit on our trip…Rudy didn’t  seem to skip a beat adjusting to it and it was not only so easy to manage but it was also just so nice not to have to think twice about his O2 supply when we were out and about on our long excursions.  I returned the unit we borrowed on Monday wistfully hopeful that we would one day be able to work out the remaining details to acquire one for Rudy permanently (lots of technology goes into these nifty gizmos and that makes them expensive).  I was surprised when our new friend Mike at Inogen called me yesterday and asked if I could drop by before the workday ended because he had a surprise for us!  When Rudy and I arrived, Mike sweetly said “there sure are a lot of people who love you guys” and presented us with a brand new unit with accessories!!  Thanks to the folks at Inogen and dear mysterious angels who chipped in, Rudy now has his very own “pump,pump” with which he is very pleased!

Thank you Inogen!  Thank you, dear friends!  The power of community is a mighty force…we are feeling it…we are empowered by it…and we are intensely grateful for it!  Thank you!

Sadly, our wonderful time away is coming to a close.  We fly home to California tomorrow (Friday) and I’m happy to say we’re not leaving with any regrets…we knew we couldn’t see or do it all so we enjoyed what we did do and packed in quite a few new and different experiences in our 8 days in Florida!  We’re tired but we’re still laughing (not a whole lot of exhausted bickering going on thankfully) and we’re all leaving with full and happy hearts.  Reality will probably hit us hard on Monday morning when we return to the school/work/housework routine but I’m grateful we’ll have the weekend to get settled a bit before we have to run too fast.  🙂  So, here’s our last “sneak peek” post…thanks for all the sweet comments this past week.  It has been so much fun sharing this experience with you all…thank you for sharing in our joy!

Day 6-

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Day Four –

Day Five –

We’ll want to write a lengthy wrap-up post once we get home to document all the exciting and tender moments we’re experiencing on this trip but we also can’t wait to share some of our favorite pics so here’s a sneak peak – page 1:

Day One –

 

Day Two –

 

Day Three –

 

 

 

 

 

 

 

 

 

 

 

 

 

Rudy had his Make-a-Wish “send off” party yesterday evening.  Wish granter Anne and her trainee Joseph came to the house with pizza, salad and cupcakes to present Rudy and our family with the official packet of information for our trip!  It was a fun evening that helped build our anticipation and excitement!  It’s sinking in that we’re actually going on this amazing adventure and we are all so grateful!  Honestly, this is something we have joyfully (and tearfully-I can’t read about a Make-a-Wish trip without crying) watched other heart families do over the years since Rudy was born but I just never imagined we’d get to experience it…I’m nervous about all the traveling and getting from point A to point B but I’m also anticipating special experiences that will lighten the heart of our family.  We have a VERY early 3am departure time out of Santa Barbara on Thursday morning which means in less than 48 hours, we’ll be en route to Florida!!!!  Yikes/Yeay!!!!

 

It just so happens that one of my wishes is coming true too…We discovered in the planning of this trip that airlines do not allow oxygen tanks on board so we needed to arrange to travel with an oxygen concentrator (a machine that converts room air into oxygen).  I’ve actually been working to acquire a portable oxygen concentrator for Rudy for over a year (since he started school) with no luck through our insurance and medical supply company.  Because the purchase price of these units can easily run in the thousands of dollars, it has been beyond our reach.  Inogen is a Nationwide Accredited Homecare provider that specializes in oxygen therapy and just happens to be headquartered here in Goleta.  Make-a-Wish gave them a call and they agreed to lend us their “top of the line” unit for the trip!!!  I still hope to purchase one at some point soon but the use of one for Rudy’s trip will completely transform the experience for all of us!  We picked it up yesterday and Rudy adjusted to it perfectly (It’s a little different in that it doesn’t give  Rudy a continuous flow of oxygen like a tank or our home concentrator but instead is triggered to give him oxygen when he takes a breath).  Thank you Inogen!!!

 

Thank you all for your prayers and for sharing in our excitement!  We are so humbled and grateful.  Stay tuned for some fun pics..:)

 

 

 

 

I’m not even sure what direction to take this post as life feels layered and scattered at the moment but the obscure list of “to dos” on this week’s list will culminate into something pretty special next week so we’re all just trying to ride the ride that is our life right now.  Sadly, Christmas is now all packed up and put away.  The big kids headed back to school today (Monday) and the big boys are preparing for their semester finals next week!  Rudy starts back to school tomorrow with a new schedule that has him departing on the bus at 7:40am!  I spent the day today running errands, communicating with the kids’ schools and Rudy’s doctors in preparation for our trip to Florida next week (!) and getting the last of the big sibs in for the flu shot.  Although my day was very productive, I’m ending the day feeling like the list of “things to do” is only getting longer as our departure for “Give Kids The World” gets closer.   Make-A-Wish does such an amazing job taking care of all the logistics on a trip like this but the reality is that there are always details that have to wait until the last minute and we’re down to that exciting final countdown.  As Olivia and Max headed out the door to go to school this morning, Olivia turned to me and said “I have a saying to keep me motivated for school this week Mom.  It’s ‘One more day at school means one more day closer to Florida.'”.  I like it…I think I’ll adopt a similar saying…:)

We’ve done a pretty good job of holding Rudy’s Wish Trip loosely and not getting too excited about it in case something happened to postpone or cancel it.  It’s so close now, though, it’s hard not to be totally giddy so I’m praying hard for health, safety and good weather for Rudy’s comfort and our family’s maximum enjoyment.  What an absolute gift this trip is and we are so grateful.

Rudy saw Dr. Harake a week and a half ago…his routine echo showed the valve leakage is unchanged (mild to moderate) and his half heart is getting larger (big sigh – not the direction we want it to go but what is to be expected).   Dr. Harake is not one to talk about big picture “what ifs” or hypotheticals so discussions about longterm options are pretty rare but it has become increasingly important for me to know whether or not he feels Rudy would ever be considered for a heart transplant.  It’s not that there would be comfort for us in knowing that it would be an option as the decision to pursue a heart transplant would be a difficult road to walk but it is something that occupies my mind quite a bit and if it’s clear Rudy would never be a heart transplant candidate then I could let that go. Currently our understanding is that Rudy would not be considered for a transplant because of his pulmonary hypertension but what if that were to change?  If his lungs healed, are there other concerns that would keep him off the list?  The answer is unclear but I did appreciate Dr. Harake’s willingness to engage in the conversation with me and affirm the value of the question.  He said he’d discuss it with the team at UCLA the next time Rudy’s case comes up in their group meeting.  We’ll touch base again in February.

Rudy had a short seizure on Friday…it was contained to his face and only lasted a couple of minutes so I didn’t feel the need to take him to the ER.  He was pretty wiped out after it happened and fell fast asleep so I let him sleep but kept a close eye on him the rest of the day.  I’m praying it was just a little blip and not an indication to increase his anti-seizure med yet again.

Speaking of Friday, one of the last big events of 2012 happened Friday afternoon when Wilson passed his written permit test at the DMV!  Yea…he is one step closer to getting behind the wheel – consider yourself warned.  Rudy is a big fan of the DMV…never short of a captive audience to woo and charm.

2013 started out right with a trip down to L.A. for Rolf, Max and Olivia to see Stanford play in the Rose Bowl (Wilson opted to hang with me and Rudy).  Not only was it a great game but we also got to visit with Bobby and Marilyn Clinton.  Bobby, a former professor at Fuller Seminary and author of several books on leadership development, has had a significant impact on Rolf’s life as a mentor and friend and we were blessed to have a chance to reconnect and give him and Marilyn a big hug!  🙂

After Stanford’s win Rolf predicted 2013 is going to be a great year!  If only it were that easy but, okay, I’ll claim it!!  Happy New Year dear friends…may 2013 be rich in joy, grace, healing, peace and fun opportunities for growth (emphasis on fun!). 🙂

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 🙂