Our spring break is starting off wet and dreary as it is raining…again…here on the central coast!  Although the kids got outside for a bit today, most of our day was spent indoors purging and sorting the kids’ bedrooms (a spring break tradition – ha!).  I told the kids that if we got our “jobs” out of the way this weekend then we could play the rest of the week.  They did a pretty good job so far.

The other “to do” on our list for this week is haircuts…everyone needed one badly so I started with Rudy at 11am and it took me almost 3 hours to do all the boys and the big boy!  I don’t dare attempt cutting Livy’s hair so she was the last to get her’s cut this afternoon at Fantastic  Sams – we even splurged on some hair bling.  Olivia decided to do a little hair styling on Rudy before we left and his bold fashion statement caught on…

Things quickly took a turn for the absurd and poor Rudy had no say in the matter…

Well, here we are…another month has been torn off the calendar and we’re halfway through February already!  Since our last post, we’ve had a couple of phone conversations with Drs. Tirakitsoontorn and Shapiro and a new, revised “trach plan” is in place.  As it stands now, Rudy is scheduled for an overnight at UCLA on February 22nd.  Dr. Shapiro will downsize Rudy to a 3.0 Shiley PED trach and keep him overnight for observation – making sure he tolerates the downsize okay.  Once he safely adjusts, then we’ll schedule the repeat sleep study.  Both Dr. T and Dr. S agree that the downsize will increase Rudy’s chances of passing the sleep study.  We’ll see…

Rudy’s monthly cardiology appt was on Monday and nothing has changed.  Dr. Harake predicts that we’ll spend the bulk of this year in “conservative follow-up”…there is no plan for a heart cath or any intervention at this point.  He feels we should use this time to focus on decannulation (trach wean) and affirms our current plan with the docs at UCLA.  So, unless something significant happens with his heart, no action will be taken.

Eventhough the logistics of Rudy’s direct medical care seem to be slowing down to a standstill, the “behind the scenes” details never lull.  After getting denied a couple of times already, Rolf is working hard to get Rudy into the  CCS (California Children’s Services) system.  Because Rudy’s current therapy and nursing services through Regional Center will end when he turns 3 yrs old, we pray the resources of CCS will be available to him by then (October 1, 2011).   Another big piece of the Rudy puzzle has to do with our most recent major family purchase…with Rudy now weighing in at over 33 pounds and still not close to walking, it became more apparent to us last fall that it was time to look into getting a medical-modified van – one that would accommodate his wheelchair.  A church contact led us to a van in San Diego that seems to meet our need specifically.  Since the medical modifications alone on these vans cost between $30,000-$50,000, we feel blessed  to have found this van for $23,500.

We share the specifics because many of you have inquired how you can help us and, although we are reluctant to put it out there, helping us purchase this van is one very practical way.  For those of you who might feel so led, our church has offered to receive gifts on our behalf  to put toward the purchase of the van.

Those who would like to gift our family can send a check made out to:

“Coast Community Church” at 4973 Via Los Santos Road, Santa Barbara, CA 93111 Attn: Geyling Family Van

Rudy got a special Valentine this morning from Gwendolyn.  Gwendolyn is a local girl battling SMA and we have been sharing in each other’s journey on our blogs (www.gwendolynstrong.com).  We also share a night nurse and Nurse Evelyn delivered Gwendolyn’s sweet Valentine last night…precious!  Thank you Gwendolyn…we think you’re pretty darn cute too!!!

This weekend was one of those special celebrations that marks the passage of time and reminds you that life sweetly marches on…:)   We were blessed to participate in the wedding of Kristina Drummond and Sam Fluitt.  We first met Bob and Kathy Drummond and their girls (Kristina and Amy) almost twenty years ago and over these past two decades, this special family has grown to be our dearest friends…family away from family!  Having had both Kristina and Sam live with us at different times in the past couple of years, our whole family feels a special connection to this weekend’s bride and groom and we were all so honored to participate in the ceremony in some way…

Rudy actually had a tough time during the wedding and reception with two occurances of his trach coming out while on Wilson’s watch which, understandably, rattled big bro…Rudy was fitful and not easily comforted most of the day.  Because we have had a challenging couple of weeks with trach issues and more  discomfort than ususal, I’m eager for our appointment with Dr. Harake tomorrow morning.  It’ll be good to check in with cardiology.  ‘Thankful, though, that the wedding was a special memory maker for the rest of us and Rudy hung in there allowing the weekend to happen for our family!   I sang “Be Thou My Vision” in the ceremony and I was struck by the closing words of the fourth verse…”Heart of my own heart, whatever befall, Still be my Vision, O Ruler of all.”  Whatever befall…we are grateful God is present and we don’t have to walk this walk of life alone. 

We’re starting the New Year off with a first ever trach stoma infection!  Thankfully we caught it early but it still looks uncomfortable.  Two doctor visits yesterday and a couple of antibioic doses later and he’s doing fine but it has been a long weekend.  The first couple of days, we watched the stoma closely but it was hard to determine if the area was red because Rudy kept messing with his trach or if he was messing with his trach because the area was irritated. 

‘Just when his care starts to feel routine, something happens to humble us.  A stoma infection involves much more suctioning than usual and multiple cleanings throughout the day to keep the area as clean and dry as possible…we were managing it great until Sunday night when Rudy had a rough night sleep.  Because he was restless and had some irregular breathing patterns because of congestion, I had gotten up to check on him a few times and he was fine.  At one point, though, we heard the familiar vibration of the stoma that happens when the trach is out!  Rolf and I shot out of bed, sanitized our hands and pulled what we needed right away to reinsert the trach…trach in…tie secured…no problem.  We’re back in bed and Rudy is settled and about an hour later I asked Rolf  “Does Rudy’s breathing seem heavy to you?” to which Rolf sleepily replied “No different than the past few days”.  At 6am I heard Max come into our room and check on Rudy and then he started to mess with him.   Irritated, I told Max not to wake him up (“we’ve been up all night!!”).  “But Mom, his oxygen mask isn’t on!”  Oh, good grief, Rolf and I walked away from him without securing his oxygen…no wonder he was breathing heavy!  Arrrrrrgh!  Thankfully he was sat-ing within his normal range yesterday and he was fine but STILL!!!!

This week’s “episode”, thankfully, didn’t turn into a BIG deal but it was a reminder to us to stay alert…Rudy’s care isn’t hard work but it is constant…no room for slacking or sleep deprivation!  Ha Ha  We’re praying for Rudy’s quick recovery and renewed strength ’cause we have a very special wedding to go to this weekend!  We’ll post more about that later!  🙂

As is our family tradition, we got up early to watch the 122nd Rose Parade this morning but 7:30am came extra early as the kids somehow talked us into staying up to ring in the new year with the rest of the West Coast.  I’m glad we did because although Rudy was fast asleep when we celebrated at 9pm with all the easterners, he was wide awake at midnight…quite possibly awakened by the Wii Sing It competition going on as we waited for the ball to drop a second time.  🙂

And so, here we are at the start of another new year.  It struck me last night that I don’t have any new year resolutions…’haven’t even thought about what I could be doing better or differently.  I suppose it would be a good exercise to give some thought to but, to be honest, I kind of feel like I’ll be doing good just to keep getting out of bed each morning in 2011.  “Baby steps” seem to remain our M.O. as the disappointments in Rudy’s journey this fall remain very heavy on our hearts.   The holidays were a wierd mix of joy and anxiety for me personally…so, I rally this morning, renew my prayers for grace & peace for all of us and strength & growth for Rudy in 2011 and commit to continue to live & love one day at a time and, right now, that feels like enough.