I went to my friend’s service today…a beautiful celebration of her life.  Rolf and Wilson are out of town this week and Max stayed home with Olivia who has been battling a high fever and feeling awful since Thursday so Rudy and I went for our family.  I admit I struggled about going earlier today…I didn’t feel great leaving Olivia and I knew it would be hard to navigate the crowd with Rudy in tow but I’m so glad I went…it was beautiful.   As expected, the church was filled to its capacity.  I wasn’t sure if Rudy would be quiet so I sat in the baby/cry room with him…enclosed with a view of the sanctuary and audio piped in through a speaker.  As it turned out, Rudy was amazingly sensitive and sat quietly watching the service intently (especially the video montage of pictures of Kenon).  I, on the other hand, sat with tears streaming down my face the entire time (sobbing at times …grateful I was hidden in a soundproof room!)

For a handful of reasons my heart has been heavy the past couple of weeks…so heavy that it has felt like I’m barely keeping my head above water.  Even though I manage the day to day routine pretty well in general, it doesn’t take much for my anxiety and fatigue to surface turning into feelings of being overwhelmed.  It can be a quick downward spiral that’s hard for me to crawl out of.  So, there I was sitting in this little room today, trying to soak in all the beautiful things that were being shared, feeling overwhelmed and sad when Joni Eareckson Tada (who sent in a video tribute to Kenon) referred to “the buoyant hope of heaven”.  It was a quick reference in her thoughts on suffering but, boy, did my heavy heart perk up at the thought of the hope of heaven being a buoy on which to hold tight and rest…even if just for a minute…so I did!  During the two hour service I cried, embraced my fears, held tight to my hope in heaven and recommitted to the tasks at hand that have worn me down lately.  It was cathartic and precious…Kenon would be pleased.  🙂

I’m praying now that Olivia recuperates quickly…we have two special weddings coming up this next week and I’m praying the virus Livy has been battling ends with her and doesn’t spread to the rest of us…we have much to celebrate with dear friends in the days to come and I sure wouldn’t want any of us to miss out.

Grateful for the blessings of today…

It’s Vacation Bible School week at our church and that means all hands are on deck in our household as we all have our volunteer assignments!  Now that the big kids are older, it’s a real blast to get to partner together in this special ministry to kids in our community…it’s such a great week for our family but it’s also a bit sad for me as it falls, every year, on the anniversary of my dad’s death.  Dad died 4 years ago today of  brain cancer.  Tragically, I learned this morning that a local friend so dear to many of us, a loving wife and dedicated mother of 3 died last night after her 21 month battle with cancer…her fifth occurrence of cancer in the past 27 years.  Hers was an amazing journey of faith and love for people…she had a deep desire to know God and share what she knew to be true of God to others.  She experienced God in her day to day journey like no one else I’ve known.  I rejoice in her home going to Jesus and all that awaited her in heaven but my heart is heavy for her family and I’m going to miss her presence in our community…her comments of encouragement on Rudy’s Beat…her friendship.  This is a sad week.

We celebrated America’s 238th Birthday yesterday at the annual Santa Barbara Rescue Mission BBQ & Carnival.  The residents of the recovery program, staff and volunteers hosted a parking lot full of homeless guests who enjoyed a delicious bbq (I especially loved the pasta salad!), some fun ol’ fashioned carnival games and a bountiful raffle of helpful items. Rudy had run of the place in his walker and joyfully greeted the guests.  Luckily our friend Dale captured a bit of the fun…

We hope you had a happy day too!  Happy July everyone!

We made it home from L.A. just in time to take a dip in the pool before supper.  Rudy is eager to get in the water after a full day buckled in his wheelchair.  Our visit to the heart clinic today was relatively quick…Rudy made quick work of his extensive echo exam by sitting still and cooperating nicely.  We talked with Nurse Flo (the transplant coordinator) over her long list of routine questions and then we waited for Dr. Alejos.  He was needed at the hospital and couldn’t get away so we ended up seeing Dr. Reardon (a.k.a. Dr. Leigh) instead.  We don’t normally consult with Dr. Leigh but he was a fellow in 2008/2009 when Rudy was hospitalized and is quite familiar with Rudy’s history.  Although we would have really liked to talk to Dr. Alejos, it was fun to see Dr. Leigh again after all these years and hear him “oooh” and “aaaah” in amazement over how far Rudy has come.  One thing I like about Dr. Leigh is he’s not afraid to talk about the “what ifs” and he tells it like he sees it.  He took a look at the echo images and confirmed what Dr. Harake told us last week…that Rudy has moved from “mild” to “moderate” heart failure…but feels Rudy is still a ways off from being in “severe” heart failure which would be the next phase in the spectrum.  He did see a narrowing of the arch which he believes may need an angioplasty during next week’s cath but ultimately that will be Drs. Harake and Levi’s call once they get in there.  There really wasn’t a whole lot more Dr. Leigh could tell us.  We knew we wouldn’t walk away from today’s appt with any new revelations or game plan but we’re still left  feeling discouraged over the fact that there is no neat and tidy action step that will prevent Rudy’s heart from failing.

We talked a little about the purpose of clinic…how some patients are there for the transplant process while others are there simply to manage their heart failure and others still are there, like today, to transition from being pediatric cardiac patients to adult management and care.  It was interesting to see the young adults who were there today navigating that very crucial transition to adult cardiac care…once again, Rolf and I walked away from clinic with a glimpse into the giant picture that makes our little corner of the “cardiac world” seem very small…no less significant or serious, just that Rudy is one of many, MANY diverse situations and needs.  Honestly, I don’t know how the heart clinic Drs and NPs don’t leave work every day overwhelmed…I feel overwhelmed for them.  We’re scheduled to head back to clinic in 6 months.

So, our sights are now set on the cath next Tuesday.  Although Rudy has had close to ten heart caths in the past, this one will be different for him. Because he is no longer trached, he’ll have to be intubated which is uncomfortable and will leave him with a wicked sore throat when he wakes up from anesthesia.  😦  A trip to Baskin Robbins may be in order!  🙂  Thank you all for your continued prayers…we are forever grateful for, humbled by  and in awe of the love that surrounds our family.

It sure is fun to watch Rudy’s personality emerge more and more as he becomes more mobile and more verbal.  He’s so happy and goofy.  He has a great sense of humor, is inquisitive and has an astute sense of things going on around him.  When he hears a loud noise coming from the kitchen or picks up on a change in my intonation, he’s quick to ask “What happen Mom?”.  He has such a big heart and is beginning to express concern for others with a pat on the back and a “How’s it goin’?”.  I was thrilled this week when Rudy crawled over to the chair I was sitting in, pulled himself up and clearly said “I wuv you” without being prompted.  Music to my ears, for sure!  These are qualities we hope for and try to nurture in all our kids and it’s thrilling to see them freely flow from Rudy now too.

Ironically, as Rudy’s figurative heart enlarges so is his actual heart.  We touched base with Dr. Harake last week and Rudy’s heart is continuing to get bigger…it’s a slow trajectory but the development of Rudy’s overworked half-a-heart is definitely unfolding as predicted.  In addition to the notable change in Rudy’s heart size, Dr. Harake’s pulse oximeter (which normally reads Rudy’s O2 sats in the low 80s) couldn’t get a reading higher than 71%.  Rudy’s low O2 sats could be attributed to the increase in his physical activity but it’s something to keep an eye on for sure as the severity of Rudy’s heart failure would be assessed by a number of variables including chronic low O2 sats.  After the echocardiogram, Dr. Harake also “downgraded” the tricuspid valve leakage from mild/moderate to moderate…another variable in the big picture.  The tricuspid valve is located between the right atrium and right ventricle and it serves to prevent back flow of blood into the right atrium.

As Rudy’s compromised heart compensates, the right ventricle enlarges so that it can pump harder and this causes the tricuspid opening to become stretched out and floppy…this causes the valve to “leak” blood back into the atrium which creates unnatural pressure and causes the ventricle to work harder and get bigger…etc, etc,etc!  A vicious cycle!

One big “heart failure” indicator that we are NOT seeing yet is lethargy.  Although we’re seeing an increase in cyanosis, we’re not seeing a drastic change in Rudy’s energy level which is why I’m not panicking.  Dr. Harake is going to discuss the latest information with the UCLA team and decide whether or not to get a heart cath on the calendar.  Although I’d like to spare Rudy the discomfort of a heart cath, an updated look at all the things they can measure in a cath would be comforting to me…we’ll see.  Rudy’s next visit to the heart clinic at UCLA is July 3rd.  I guess it’s fair to say that we’re “on alert” but also very much aware that the road to full on heart failure could be a long one and so patience and discernment are key as we continue to monitor the situation from day to day.

As always, we sure appreciate your prayers!!

Our first week of summer vacation was full and fun and now we’re settling into Rudy’s summer school schedule.  Wilson is enjoying his first “real” job at our local car wash, Olivia is keeping busy with her dog walking job and craft projects, Max is looking forward to guitar camp coming up in a couple of weeks and all three big kids are headed to Kansas later this week to visit Gma Jo which will be a fun adventure!  Life marches on and we’re taking the time to cherish it all.  🙂  We hope your summer is a fun and happy one too!!  🙂

Folks around here are shocked and deeply saddened in the aftermath of last Friday night’s shooting rampage that took place nearby in Isla Vista.  Although our family doesn’t  know anyone who was directly affected, we know quite a few people who are involved in helping to “pick up the pieces” and bring healing to the community at large…friends who work in the UCSB counseling office, UCSB employees, Sheriff Bill Brown, students…and our hearts are heavy for the students & faculty left to process it all and the families who are left with such deep, deep loss.  We’re just a quick 5 minute drive from where the shootings occurred…a place we visit often to go to our favorite taqueria “Freebirds”.  On one hand, Isla Vista can feel like another world away as it is densely populated with UCSB and SB City College students and is known for crazy college parties but on the other hand it’s quite startling to stop and realize how integrated we are to the UCSB community…in addition to our frequent runs to Freebirds, one of our favorite stretches of beach (Campus Point) is in Isla Vista, Olivia plays Volleyball at UCSB and is coached by students, Rudy will go to summer school at Isla Vista elementary, the Alpha Phis (the sorority initially targeted by the shooter) volunteer at the Rescue Mission a couple of times a month, (etc, etc) and Liv was just on campus for a field trip Friday morning…it hits close to home literally and figuratively.

I have to admit, too, that I feel a heightened sense of  (I’m not sure this is going to come out right) discouragement over these senseless killings.  I really don’t mean to make this about me but I find it a little strange that my first emotional response is discouragement rather than feeling sad or even angry.   I really think that since our family’s time, energy, resources and focus 24/7 are spent trying to preserve a life, it makes events like what happened in Isla Vista seem even more tragic to me.  It’s a very complicated situation, I know, with so many variables and I don’t want to over-simplify it by any means…it’s just how I’m feeling today….disappointed and burdened.

Ironically, as all of this  unfolded in Isla Vista, our big boys were in San Diego for a church youth conference at Pt. Loma University.  They spent 4 days with 1500 other teens competing in a variety of fun events, worshipping God together, encouraging one another and having a blast.  Wilson entered a preaching competition, Max always the sports enthusiast played hard at the sporting events and they both competed in a talent competition together  – click here or here.  (FUN!)  So, as I had one eye on the local news coverage, my other eye (albeit teary eye) caught glimpses of what the boys and their friends were up to down south on FB…stark contrasting images indeed.   It made me pray for those 1500 teens even harder…that the TRUTHS of life would root in their hearts, that they would know they are deeply LOVED no matter their circumstances and that they would CHERISH life – their own as well as purposing to make life better for others…

It feels a little weird to be plugging away at the daily schedule but there has been so much to fill our week this week…studying for finals, the DPHS Talent Show (Max ROCKED it), preparation for LP’s 6th grade promotion ceremony next week & Rudy’s graduation from Learning Tree as well as the big 6th grade dance TOMORROW!  ‘So grateful for it all…

I got a sweet glimpse into Olivia’s mind through poems she wrote this year in her poem journal for school…my favorites are her preposition poem which describes the day Rudy came home from the hospital and the last stanza of her “I am from…” poem.  A great reminder that “it’s all good”

Preposition Poem:  My Baby Brother

(By Olivia Geyling)

“Inside the house

Until I see the car

Through the rain I run

By the bushes

Past the tree

To the car

In my arms

After a year

Beneath blankets

At his home

Below my eyes are tears

With my baby brother.”

Praying for peace and healing for our community tonight.

It’s only been a couple of weeks since our last post but, boy, the full spring calendar continues around here and we’ve packed in quite a bit …Mother’s Day, a trip to the pediatric dental clinic at UCLA, a Girl Scout camping trip, Rudy’s first “beach day” and Rolf’s birthday!!!  With just 12 school days left of school, the boys’ finals and Livy’s 6th grade promotion are just around the corner.  It’s an exciting time, for sure.

With so much going on in the life of our family, it has been nice to have a little respite from major medical “to dos”….we’ve remained current in all of Rudy’s routine appointments but there hasn’t been any medication changes or follow up treatments to schedule and it feels like a break.

Rolf and I took Rudy down for his first teeth cleaning at the dental clinic at UCLA and we were very encouraged by the appt…Rudy cooperated  and his oral health status continues to be good.  There is no sign of calculus (hardened plaque) at the base of his teeth and gums (which would be BAD) but the calculus that is on the surface of his teeth continues to provide a protective seal against decay (which is GOOD).  The dentist he saw this time confirmed what the dentist told us back in September during our first consultation and all of the information gathered by the dental clinic will be passed on to the docs at the heart clinic as it will be important in determining Rudy’s eligibility for a heart transplant down the road….just one of many variables in determining his eligibility but it’s definitely an important piece of the puzzle.  The tiny victories along the way are definitely encouraging.

Here’s a look at some of the other big events of the month…

I broke tradition and actually went camping this past weekend with Olivia’s Girl Scout troop…one last big hurrah before promotion.  It was a special time, for sure, with the girls…most of whom have been Girl Scouts together since Kindergarten!  Since we camped at El Cap just 10 minutes away from home, Rudy and Rolf joined us for our day at the beach and it was fun to share Rudy’s first REAL day at the beach with the girls.

We got home on Sunday just in time to celebrate Rolf’s birthday!  A perfect exclamation point to a fun weekend of many blessings.