We trust you’re enjoying the lull between holidays too!  Joy to all!!

…but I’m not sure Rudy is too keen on his existence!

Not even the big sibs were able to comfort Rudy…Santa wasn’t threatening until we made Rudy sit on his lap!  Ha   (Bless his heart) 

     Although Rolf and I continue to battle the temptation to dwell on the heartache of recent disappointments where Rudy is concerned, we have had a ton of fun distractions including this little trip to see Santa and Oma’s visit this week.  I even managed to pull off a jewelry open house at the last minute yesterday and enjoyed a nice turn out…connecting with friends I haven’t seen for a while.   The hustle & bustle continues this next week with another GVJH band concert, caroling with the Girl Scouts, Rescue Mission staff party, visits with “out-of-town” friends and more…treasuring it all. 

Ugh,  just when we thought we were on the verge of some real progress, we got the disappointing news today that Rudy did NOT pass the sleep study!  Dr. Pornchai (UCLA Pulmonologist) called this afternoon with the news.  Apparently, there was no question about it…shortly after plugging the trach while sleeping, his heartrate spiked and his breathing became labored.  (Where was I?)  It’s clear he is still dependent on the trach and so we need to stop the decannulation process and wait to see Dr. Pornchai again at our next appointment in late January.  We were pretty convinced he was ready to pull the darn thing so today’s news sure feels like a setback.  What’s most depressing is the thought of having to reorder trach supplies with CrApria…I’ll have to make that call tomorrow. 

We have a couple of questions for Dr. Shapiro (UCLA ENT) and will try to make contact with her tomorrow as well.  Now that decannulation is off the table, I guess we’ll move on to plan C (plan A being “heart surgery”, plan B being “decannulation”…) which is working on Rudy’ s food aversion and getting him to eat real food.  This is a long, tedious process but the next “major milestone” we’ve been waiting to conquer.  Though minor compared to heart surgery or decannulaton,  the pressure is on at this point because if he doesn’t learn to eat and eventually eliminate the need for the feeding tube, I think I’ll start to pull my hair out or it may just start falling out on its own.  As seems to be our MO this fall, our challenge in the coming weeks will be to stay focused and not dwell in the disappointment.  We’ll keep you posted…As always, thank you for praying!

No, we didn’t see the new Walt Disney animated film this weekend (although we heard it was good) – we didn’t have time with all the Christmas prep going on at our house!  “Tangled”, however, did define a good bit of our activity…

Max managed a more efficient and quick job of the outdoor lights lining our roof (he’s becoming quite an expert at hanging outdoor lights!) and we finished trimming the tree today after church so Christmas is finally in full swing here in the Geyling household.  Our festive weekend started at the annual holiday parade downtown on Friday night.  Olivia participated in the parade with her Girl Scout troop and Wilson marched with his school band.  Max was home from school all week with a fever and was thrilled to get out of the house for a bit to watch his sibs in their parade debut.  Rudy wasn’t too keen on the whole experience – too many people and too many loud sirens from participating fire trucks and police cars – but he did like all the lights!!

We haven’t heard any news about the sleep study results.  Dr. Shapiro (UCLA ENT) and I talked on Monday. If Rudy did pass, it is unlikely we’ll pull the trach before the end of the year as she is booked solid.  So, we’ll wait patiently for things to unfold and enjoy the holidays while we wait.  There are a number of school activities and the Christmas Eve service to look forward to in addition to a weeklong pre-Christmas visit with Oma starting on Thursday!   We are holding our schedule loosely willing to jump into action if Dr. Shapiro should have a cancellation between now and New Years.  🙂  We’ll keep you posted.  Rudy sees Dr. Harake (SB Cardiologist) tomorrow for our last monthly appointment with him in 2010!  My, how time is rushing by…it makes my head spin sometimes.  🙂

Today is a quick pit stop in Santa Barbara for me and Rudy sandwiched between a family visit to San Diego over the holiday and tonight’s sleep study at Children’s Hospital L.A.  It’s a quick turnaround but we’re thankful for our fun getaway and for the slot in the sleep lab that can often be tough to schedule. 

Shortly after Rudy’s heart cath, when it was determined we would not be heading into heart surgery, we decided a family trip was in order!  It just so happened that Max and Olivia won tickets to Sea World for the whole family at the Heart Walk and a school fundraiser so we were already primed and eager for a visit to San Diego.  We were blessed to spend Thanksgiving day with dear old friends from my years in San Diego who also happen to be Rudy’s godparents and then we spent the day at Sea World on Friday – a really fun way to usher in the holiday season.  It was a huge effort for such a quick trip but it was refreshing and restorative on many levels. 

I’ll be sure to post an update when we return from L.A.  I’m not sure what to expect tonight but I’m sure it will all go fine…not eager to battle the holiday traffic down the coast this afternoon but I have a nice stack of Christmas CDs to pass the time.  Thank you for praying for a successful sleep test for Rudy, our safe return and a good start to the post-holiday work and school week for Rolf and the big kids…it’s hard to go back to the routine after all the fun!  Holiday blessings to you all!!!

We were blessed by a quick visit from Dr. Dan this weekend who was in town to run the SB 1/2 Marathon!  He told us proudly when we were down for Rudy’s cath that he was going to run in Rudy’s honor so we outfitted him with a “Team Rudy” shirt.  We threatened to pull our sponsorship if he didn’t finish…thankfully he performed well and from the looks of the picture he texted us below, he had a good time too.  Thanks Dr. Dan!

Rudy and I head down to UCLA early tomorrow for another Bronchoscopy…the purpose of this procedure is to remove the scar tissue in his airway in preparation for trach removal.  Rudy’s ENT, Dr. Shapiro, has scheduled an overnight stay in the PICU for observation and we should return home on Wednesday.  It doesn’t sound like much fun but it’s pretty routine and we trust Rudy will bounce back quickly.  Once the scar tissue is removed, we can schedule the sleep study at Children’s.  It sounds like this can take a long time to get in the books so we may not get in before the holidays – we’ll just wait and see.  In the meantime, Rudy is getting alot of practice with his speaking valve these days – so much so, that the big kids asked recently if we could take the valve off because Rudy was making so much noise they couldn’t hear the movie they were watching.  Ah, the luxury of having a little brother with volume control!!!  We’ll have some big adjustments ahead when that trach comes out permanently!  Ha

Yesterday was Rolf’s and my 18th Anniversary and, ironically, we’ve had a number of people ask us recently how we (as a couple) are doing so I’ve had our relationship on my mind quite a bit lately.  It seems appropriate to share a bit of an update on Rudy’s Beat as this is part of the journey.  We’ve purposed to be transparent and detailed in our account of our life with Rudy primarily to encourage people to pray…to pray informed, passionate prayers on our behalf because from the very start we were keenly aware of our inadequacies and our desperate need for God in all this.  We’ve experienced an abundance of God’s grace throughout this journey and a good bit of that grace has spilled over into our relationship as well.  I think I’ve mentioned it before but Rolf and I do pretty well in crisis…this is by far the biggest life challenge we’ve ever faced together but we have always been good partners in hard times.  I’m deeply grateful for this and I  don’t  take it for granted.  We’ve learned over the years that humor and not taking ourselves too seriously serve our relationship well in times of crisis and since Rudy’s diagnosis, we have given each other a pretty wide berth…trying hard to keep the emotions and responses to one another (and the things not done or said) in perspective of the big picture and to not take the negative stuff too personally.  This coupled with an occassional “check-in” counseling session has helped us really love each other in this and not turn on one another in fear or pain. 

This is a good place to be in while navigating crisis but not a great place for any relationship long term.  Where Rolf and I are challenged is in our ability to set aside the demands of Rudy’s care and our family to really prioritize each other.  We’re so great at “family” but challenged, at times, at “us” and we’re both feeling it.  Giving each other “a wide berth” is an expression of grace but gone unchecked too long and that “wide berth” can become an unhealthy distance and we want to guard against that from happening.  I wonder how we transition ourselves out of “relationship-survival mode” and into a “new normal” where attention to the details of “us” gets first dibs.  Where does the energy and creativity and focus come from when life is at its fastest and most stressful?  And so, we pray and ask for continued grace as we seek to grow in our love for each other and make year #19 even better than the 18 before it.  Happy Anniversary Rolfi…I’m glad we’re doing life together!