We are enjoying celebrating Christmas with each other and Oma visiting from Alabama.  The past couple of weeks have been a string of fun-fueled, high octane days and now the hustle and bustle has subsided…we are blessed.  We trust your holiday and Christmas celebrations were fun too and filled with things that bring you great joy.  The past several days have been filled with things that remind me how very far we have come in our journey together and how much we have for which to be thankful…

…and helping his brothers sing “Run, Run Rudolph”…

We welcome a little down time the next couple of days before the start of the new year…time to rest, regroup, reflect and anticipate the blessings of 2016.  Merry Christmas dear ones!  We are grateful you are a part of our family’s story.

 

Our summer is well under way and we’ve had non-stop fun since the last day of school!

Grandma Jo and Oma arrived a couple of days later in time for Wilson’s graduation on the 10th.  The 10th was also Max and Olivia’s long awaited last day of school!!!  Woo Hoo  We had lots going on that day!  🙂

Wilson was selected to give one of the student speeches during the commencement ceremony and it was, of course, a highlight of our day.   Rolf and I weren’t allowed to read it or help him edit it beforehand as he wanted it to be a surprise.  😉  I’m glad we have a video and transcript of it because, in all honesty, it was hard to focus on what he was saying…all I could think about was how much he’s seen and experienced in his 18 years that has helped shape him…his early years in South Central Los Angeles as a missionary kid, going with the flow through several moves (and three elementary schools) until we settled in Goleta, the many hours he has spent at the rescue mission and, of course, being the big brother to Max, Olivia and Rudy (and the unique experiences/responsibilities that come with being the older sibling of a heart kid).  As Wilson shared his thoughts on “community” with conviction and confidence, all I saw was God’s grace in action…I have no idea to what extent God has extended grace to Wilson in his life so far but I do know without a doubt that there have been many crossroads in the life of our family where darkness and heartbreak could have overwhelmed his spirit but instead he has grown to be a young man confident in God’s love for him and in a greater purpose for life beyond himself!  So, so grateful and so motivated to pray for continued grace to be poured out on him, Max and Olivia (& Rudy too) as the uncertainties of the future unfold in due time.

What made me most proud listening to Wilson’s speech was knowing how whole-heartedly he believes in the power of community.  He demonstrates it in how he does life and he inspires me.

 

After all that, Rudy still had two more days left of school (Livy even went with him one day to help in his classroom)…he wrapped up his first year at Mountain View on Friday the 12th!  We are so grateful for his successful and super fun first year in Kindergarten…our thanks go out to his teachers Mr. Casady and Miss Avedissian and his nurses Sara, Jomana, Viviana and Karen who all contributed in BIG ways to his adjustment to a new school and his progress!  Way to go Team Rudy!!!

Rudy has had a little break and will head back to school for the special ed “extended school year” program next Monday.  Although the summer program is less structured than the regular school year, it helps keep the momentum of Rudy’s progress going and Nurse Viviana will be there to maintain continuity in his care.  Rudy will enjoy seeing Viviana and some of his friends again!

 

 

 

 

 

 

 

 

 

 

Once all the graduation festivities came to an end, we put the two grandmas to work as we got everyone organized for a big family trip to Hawai’i!!!  Yep, we decided to bite the bullet and make this trip happen (with grandmas in tow too) since this will likely be the last opportunity we’ll all have to travel together like this.  It took months to plan and Rudy has had a bit of a tough adjustment to the heat and humidity of the islands but all in all the hard work and effort in getting our family to Oahu and Maui has been worth it.  Talk about starting off the summer with a big bang…it’ll be hard to top this but we have a whole summer ahead to look forward to.  I’ll post some fun pics of our adventure when we return in a few days.

Aloha and “Happy Summer” everyone!!

 

 

 

 

 

Wouldn’t you know that after a warp speed spring, these last two weeks of school are going at…a…snail’s…pace!  🙂  School has kind of been a secondary activity with all the other special things going on but there is light at the end of the tunnel with Wilson’s Senior Sign-Out Day on June 5th, Max and Livy’s last day on June 10th and Rudy’s last day on June 12th!  We are definitely ready to wrap up this school year and celebrate Wilson’s graduation with Grandma Jo, Oma and friends!! 🙂

Rudy had another great dental check-up at the UCLA pediatric dental clinic last week.  This is significant as Rudy’s oral health will be a key determining factor should he become a candidate for a heart transplant down the line.  And since a cavity would require a trip to the OR, there’s even more motivation to brush, brush, brush those teeth!  Rudy also saw his Endocrinologist this week and everything looks the same regarding his thyroid…no worse, no better.  Dr. Hosono would like to take a closer look at Rudy’s growth hormone levels.  Rudy is growing but at a very slow rate.  It is likely a heart/O2/circulation issue and not a growth hormone deficiency but better to run some tests and find out for sure.  With that, we have completed this round of routine check-ins with ALL of Rudy’s specialists!!  Yay!  We see Dr. Harake (cardiologist) again the end of June but everyone else we won’t see until November.

The big kids had a special opportunity over Memorial Day Weekend to go to a youth conference together with kids from our church.  It has been a Memorial Day Weekend tradition for Max and Wilson the last several years but this was the first trip to Elev8 for Olivia.  The kids joined 1700 others at Pt. Loma University in San Diego and had a GREAT time competing in fun events and connecting with friends made over the years.  Wilson and Max entered the talent competition and won 1st place!  As 1st place winners, they got to perform their song for all of the conference attendees.  Thankfully their performance was captured on video…they put together their own arrangement of “Dark Horses” by Switchfoot with an original rap by Wilson thrown in the middle:

Olivia and her friends Cady and Jessica spent two afternoons working diligently on t-shirts for their ultimate frisbee team…the boys were wearing theirs when they won their medals!  Ha ha

With the school year winding down, Wilson is receiving quite a bit of recognition which is wonderfully affirming for him but also a little embarrassing.  I don’t mean to add to the embarrassment but wanted to record his accomplishments on Rudy’s Beat for safe keeping.  What makes us most proud in Wilson is his upbeat, disciplined, others-centered approach to life and his genuine love for God.  It’s such a blessing to know others see those traits in him as well.

Ok, We’ve cleared the final turn into the straight away towards the finish line…the checkered flag is in view!!  Woo Hoo!!!

Here we are near the end of February already!  It turned out to be a full, emotion-packed month which is going to culminate with my 49th birthday the end of this week.  Yikes!!  Where did the month go?…Where did the last decade go?

Life got so full the past couple of weeks that I even missed Rudy’s cardiology appointment last week!!!  In the 6 1/2 years that we’ve been seeing Dr. Harake, I never missed an appointment…until now.  Thankfully his scheduler was able to squeeze us in tomorrow morning so we won’t be too late making it up.  🙂

So, what was so distracting?  Well, we said “goodbye” to Rudy’s longtime school nurse a week and a half ago :(…Rolf and the big kids met me at the school for a little surprise send off with Rudy and his classmates.  It was a sweet time honoring Sara and welcoming nurse Jomana to the team.  Rudy is definitely adjusting but he is in good hands and we wish Sara GREAT success at the pediatric clinic!!

Wilson was one of nine DP seniors who was chosen as this year’s Trailblazer recipients and acknowledged  at the last basketball home game of the season…so fun for him.

Max’s first Varsity Hockey season ended with a win for a third place finish…

We’ve collected a handful of fun video clips this month that were too short to upload to Vimeo by themselves so I made an iMovie of them all together to make it long enough to upload!  (feeling very tech-savvy right now)  Enjoy!!!  (a video message from Rudy to Nurse Sara, an original rap by Wilson and Max, this year’s installment of “Will You Be My Valentine?” filmed by the big sibs on a ski lift at Big Bear on Valentine’s Day, Wilson and the DP drumline at the last Bball home game, Wilson and Max playing at FCA).

In addition, the big sibs got to go on a ski trip with their church youth group over the long President’s Day weekend, Rolf, Rudy and I hosted our sweet newlywed friends Sarah and Chris that same weekend and I had a speaking engagement & a couple of opportunities to sing this last week!  Special stuff!!  In the midst of all this goodness, Rolf and I were reminded of the severity of Rudy’s situation by a very interesting CDC research article. How it relates to HLHS is secondary to the original study focus but check out the survival rate chart at the end of the article…Click Here – CDC Article.  Although we genuinely look at our life as 1/2 full as opposed to 1/2 empty, it is shocking to see in black and white that HLHS has the lowest survival rate of all major birth defects!  Makes us EXTREMELY grateful for Rudy’s life and motivates us to pray, pray, pray!!!

I apologize for my delay in posting after our appt. with the heart clinic a couple of weeks ago…I haven’t been very motivated to post in part because our family schedule has been full but also because our time at the heart clinic left me feeling confused and irritated.  It has taken me a bit to process it but I think I’ve come to a helpful shift in my perspective.

Rudy is fine…no change good or bad but what frustrated me was the consultation we had with the cardiologist after Rudy’s exam. With no new things to report regarding Rudy’s condition, the discussion quickly turned to hypotheticals (I hate talking about hypothetical scenarios) and I was confused by the lengthy dialog we were having about things we ruled out 4 years ago.  There are a handful of cardiologists that rotate through the clinic so we see a different one every visit.  As a result, it’s only natural that we would have repeat discussions with different doctors but it felt like we were reverting back to square one this visit and it felt like a waste of time.   The cardiologist we saw is a great doctor and my frustration wasn’t with the cardiologist specifically but rather with clinic itself.  Why do we go?  What’s it’s purpose, really?

In reflecting on the past couple of years, I realize now that my expectations for Rudy’s heart clinic appts have been pretty unrealistic.  You see, Rudy’s condition is monitored closely by Dr. Harake every 6-8 wks here in Santa Barbara, Dr. Harake keeps the team at UCLA updated and then we check in with them face-to-face at the heart clinic every 6 months. I approach each clinic appt with great expectation hoping to get helpful information that will serve us in developing a plan of action for Rudy.  Of course, with Rudy being in limbo medically, this doesn’t happen and so I usually leave clinic disappointed and emotional.

It’s a totally understandable dynamic but I realized this last visit that my perspective on clinic needs to be revised…I don’t think the purpose of clinic is to GET anything but rather to GIVE the team information they need to determine Rudy’s current status and maintain a breadth of baseline information that will be helpful should Rudy ever become a heart transplant recipient.  There’s only so much that can be determined by an echocardiogram.  The details that Rolf and I can give about Rudy’s interaction with every day life is important in filling out the bigger picture!  It may seem like a subtle mental shift but it has a huge emotional impact.  Not only does it eliminate disappointment over unmet expectations but, if my role in providing information is crucial, then it also refreshes my motivation for clinic.  It’s a helpful distinction for me and I’ll have an opportunity to try out this new perspective in a couple of months when we return to clinic in April.

In the meantime, Rudy is plugging away at physical and occupational therapy at the medical therapy unit as well as speech therapy, occupational therapy and adaptive P.E. at school and continues to take great pride in his developmental progress.  Regardless of all the details that go into assessing Rudy and all the extra services that define his daily routine, Rudy is a walking miracle and I find great joy in the reminder today that he is fearfully and WONDERFULLY made (Ps. 139:14).  This truth needs to be my overriding focus ALWAYS!  🙂

Rudy’s a good helper as he demonstrated this week while helping to bring the groceries in from a Costco run.  Check him out in action!…

Our home is quite a bit sweeter now that the big sibs are home safely from their trip to KS!  All reports are of a great trip to see Gma Jo and the Wilson cousins!  I’m thrilled they had a nice time but also really glad to have them home as is Rudy who was too excited to take a nap this afternoon.  🙂

We’ll have Monday to get everyone settled and unpacked and then Rolf, Livy and I will head down to UCLA on Tuesday with Rudy for his cath.  We’ve had a couple of little hiccups this past week with a short seizure early Thursday morning (3am) and a shiner on his left eye from a spill on his motorized bike today!  He’s happy and no worse for the wear but he sure is keeping us on our toes as we prepare for this cath.  🙂  We’ll post an update on Tuesday…as always, thank you for your prayers!

My mind is still spinning from all that our family accomplished in the last week and a half but my prayers for a strong finish to the school year have been answered and I’m looking forward to a lack of structure to the “lazy” days of summer ahead of us…I just need a few days to decompress a bit.  🙂  Yay!  Welcome Summer!!!

May 30th was a BIG day that included Rudy’s official promotion from his “blended bonus year” to being a full time Kindergartener!  Woo Hoo …

May 30th also included La Patera’s 6th grade dance!!!  A special “end of the year” event that the 6th graders look forward to all year long!  Olivia and a couple of her friends had fun getting ready at our house after school…

Big bro Wilson took time out of his intense study schedule for finals to chauffeur the girls in our neighbor’s Grand Marquis…

Tuesday June 3rd was Olivia’s 6th grade promotion.  Rudy sat quietly throughout the entire ceremony which allowed Rolf, the boys and I to enjoy it all…it’s hard to believe it’s our last La Patera promotion…the culmination of so many memories for our whole family!

Thursday June 5th was the last day of school for all 4 kids…Rudy enjoyed his last day in Mrs. Farrington’s class with his La Patera buddies.

There really have been more moments to savor the past 9 days than we’ve been able to document on Rudy’s Beat…Rudy’s smiles have been the biggest I’ve ever seen in the last couple of days since the big sibs have been home…the BEST part of Rudy’s summer for sure!  Grateful, grateful!

We are definitely in a FULL season right now with LOTS going on but, thankfully, that also translates into “riches” in the form of a variety of fun activities, new experiences and beautiful people.  It’s a season of heightened gratitude as well as we wind down another school year and take a little time to reflect on the fun that was had & the kids’ accomplishments this past year.  Our family was blessed by another great batch of teachers and we enjoyed having many of them over for dinner in appreciation of all their hard work.  We had the 6th grade La Patera teachers and a couple of Dos Pueblos teachers over last Wednesday evening and Rudy’s teachers from La Patera and Learning Tree over last night!!  Two evenings full of great company, pleasant conversation, good food, belly laughs and greater insight into the lives of the men and women who help educate our kids.  Talk about RICH!!  Our kids are being invested in by a group of people with varying personalities, passions and life experiences and we couldn’t be more grateful for all that Wilson, Max, Olivia & Rudy are learning not only from these individuals but also through their example.

Rudy had a transitional IEP (Individual Education Plan) meeting yesterday.  This is normally an annual meeting that happens for Rudy near his birthday in the fall but because Rudy will be transitioning from pre-K to Kindergarten officially in the fall, it’s necessary to meet and iron out all the details now.  Yesterday’s meeting included Rudy’s current teachers, speech therapist, occupational therapist, district nurse, classroom nurse, adaptive PE teacher, the district psychologist, the district special ed director, next year’s school principal, next year’s speech therapist and next year’s general ed & special ed Kindergarten teachers…phew!!!  Once again, Rolf and I walked away humbled by and grateful for the many voices accessing and speaking into Rudy’s overall educational experience.  Old goals were discussed, new goals were established and plans for Rudy to be placed in an immersion class made up of special ed and typical children were made.  The program looks like a great one but it does mean that Rudy will be permanently placed at Mountain View Elementary School and our family will have to say “goodbye” to our beloved La Patera after 7 great years there.  The La Patera community of staff and families rallied around us when Rudy was born and were of practical support in the many months that followed (i.e. brought our family meals for 7 months while Rolf and I shuttled back and forth between home and the hospital), they celebrated with us when we brought him home, they helped keep a close eye on the big kids through it all (giving an extra reassuring hug when needed) and welcomed Rudy, officially, as a part-time student this year!  Precious memories…talk about RICH!!

We’ll have to say goodbye to the special teachers at Learning Tree as well.  We always knew Rudy’s time at Learning Tree would just be for this year but we believe in establishing roots wherever we land (no matter the duration) and we’ve grown very fond of the staff there…friendly, patient, focused & firm when necessary but always loving.  Rudy has developed a great deal this past year…and he greatly benefited from his time at Learning Tree.

The one constant in all of this, for which Rolf and I are deeply grateful, is Nurse Sara (pictured in the middle).  She began working with Rudy at the start of this school year, will accompany him to summer school and, if all goes as planned, will continue on with him next year at Mountain View.  A large part of Rudy’s success at school this year is due to her easy-going demeanor, nursing expertise, compassion and the continuity of care she provides for him no matter the locale.  She is a huge support to him and their bond is clearly established…and I’m pretty grateful for her friendship too!  🙂

All of this adds up to immeasurable riches in the life of our family and, as always, we are blown away!

We have just 4 more weeks left of school…there’s something on the calendar practically every day between now and then…the race to the finish begins…now!  Here we go!  🙂