We’re down to less than a week before Christmas…we still have the SBRM Homeless Feast,  a couple of special church services AND a trip or two to the store left to look forward to before the big day.  Grandma Jo arrived this week from Kansas and the kids are eager to start their Winter break..in the midst of it all, I’m filled with gratitude for the family and friends that surround our family. ‘Just wanted to stop and take a minute to tell you that you’re appreciated and dearly loved.

 

 

 

 

 

 

 

 

Heart Update:  Rudy saw Dr. Harake this week for his routine cardiology appt.  I’m always eager to touch base with Dr. Harake and find out where we stand.  The echo this month shows a bit of an increase in Rudy’s heart size.  Enlargement of the heart is expected in HLHS patients.  Rudy’s little half a heart is not capable of pumping the blood his body needs effectively so over time it will get bigger and will ultimately lead to heart failure.  Surgical interventions (i.e. the Glenn and Fontan) help alleviate some of this pressure on the heart and slow down its enlargement but it’s a side effect that we’ll always need to keep a close eye on whether Rudy is able to have future surgical treatments or not.  The notable change in Rudy’s heart size is concerning but Dr. Harake’s response was calm and matter of fact.  He would like us to make an appt. with Dr. Alejos (who directs the pediatric heart transplant program at UCLA) to simply touch base and discuss options, if any, Rudy might have.  We talked to members of Dr. Alejos’ team at the heart clinic back in May but we have yet to talk to Dr. Alejos directly which Dr. Harake would like to see happen so we’ll follow up on that before our next cardiology appt in February.  The change in heart size is not severe enough that we need to act quickly but a reminder that we do need to be actively thinking about our next step should Rudy’s condition decline.

Even the slightest change in Rudy’s status can cause our hearts to sink and send us into a bit of an emotional tailspin but the reality is that this is just an extension of the path Rudy has been on for 5 years…nothing new, nothing we weren’t warned about.

It all just makes the joys in this journey even sweeter…honestly.  One of the greatest joys in our journey with Rudy has been the amazing people with whom we share similar paths.  Because of everyone’s complicated lives and the distance between many of us, much of our communication with other heart families is via FB or email but once in awhile we get the great joy of hanging out in person and we got to do just that with one of our favorite heart heroes last weekend when we were up in San Jose.  The Nelson family was kind enough to take time out of their holiday weekend to spend a day with us and we soaked up sweet time with Moriah, her parents, little brother and brand new baby sister!!  Honestly, Moriah’s smile when I said “hi” to her filled my whole being and I felt I was walking on holy ground when she and Rudy interacted…they are sweet buddies and I’m so grateful for the little visits we’ve gotten to share with Justin, Victoria and their precious family.

We sure packed our 2 1/2 days in the Bay Area full of fun activities and friends who we haven’t seen in a very long time…all of which was good for our souls!  Happy December friends…Wishing you all joy, joy, joy!!!!

A little flu bug came to visit us earlier this week…Olivia and I both had it for about 36 hours from Tuesday afternoon until our fevers broke late Wednesday night.  It left as fast as it came for which I was particularly grateful on Thanksgiving morning but it has been a while since I’ve felt that sick.  In fact, I thought maybe we would have to alter our Thanksgiving holiday plans as a result but once the fevers broke, Livy and I perked up and the family was able to get the car packed and on the road just a few hours later than originally planned…headed for the Bay Area.  This little family weekend getaway was originally planned as a football trip for Rolf, Max and Olivia to see the Stanford/Notre Dame game on Saturday but when we realized it landed on Thanksgiving weekend, we decided to make a family trip out of it and visit friends in the area too.  It’s nice to get away and the Bay Area is about the longest distance Rudy will tolerate in his wheelchair and the big kids will tolerate crammed together in the backseat of the medical van!  🙂  Although there was nothing traditional about yesterday’s Thanksgiving Day, we managed to squeeze in a couple of thoughtful traditions…at Olivia’s leading, we went around the table and all shared the things we’re most thankful for while we ate at a Hometown Buffet off the freeway in Salinas and we had a family toast with Martinelli’s Sparkling Cider once we arrived at our destination.  🙂  Good Times!

While I was in bed from Tuesday to Thursday morning, I was so grateful for the kids…Livy, who was battling her own 102 temp and lethargy, didn’t complain and took care of herself, Rudy entertained himself (aka “enjoyed having free range of the house and emptying every accessible cabinet”) and Max & Wilson made themselves available to help while Rolf was at work (which included taking care of Rudy’s feeds, meds, baths AND more than one technicolor diaper blow-out – THANKS WILSON!).  When it was clear Livy and I wouldn’t be going to the big feast at the Rescue Mission on Wednesday (very disappointing!!), Wilson was happy to drive himself and Max to the event and they even filled in for me by providing musical entertainment in the courtyard while the guests waited to be served!  So grateful!!!

They make a difference in people’s lives…they make a difference in my life…they make a huge difference in Rudy’s life.  I hope they understand their significance someday.  I have pictures of Rudy interacting with each of the kids at various times this past year and I tell the big kids that if they ever doubt in life that they are adored, they should just take a look at these pictures…

Olivia was at a friend’s bday party last weekend and a friend of ours sat next to her at lunch and asked “What’s great about being a Geyling?”.  Olivia thought for a moment and said “We laugh a lot.”.  I heard similar sentiments from the others yesterday as we all shared what we’re thankful for!  How grateful I am that of all the things that go on in our household from the silly to the scary, “laughter” rises to the top.   May it always be so!  ‘Praying laughter is filling your home this holiday weekend as well.  As always, we are grateful for you!!  Happy Thanksgiving Everyone!!

 

 

 

 

 

 

Holy cow, it was just Halloween, I blinked and now we’re less than a week away from Thanksgiving!!!!  I’m super excited for the holidays but I fear the next month is going to FLY by, once again, much too fast.  🙂  As always, my goal is to savor every moment of the holiday season…the harried, the quiet and the festive!!!  But I’m getting ahead of myself, there has been much to savor this month already.

It was a bit of a blur but Rolf and I celebrated our 21st wedding anniversary on the 7th.  As it turned out, Stanford was playing Oregon in Palo Alto that day so Rolf and a friend stole away for a long day trip up north to see the game.  Rolf and I managed a quick breakfast date on the beach before they left and we’re looking forward to a little overnight getaway after the holidays when things calm down a bit.  😉

Bright and early on Veteran’s Day,  Olivia, I and her entire 6th grade class/teachers/chaperones boarded a couple of Air Buses and headed down to Long Beach to catch the boat to Catalina Island on our way to CIMI (Catalina Island Marine Institute).  CIMI is a special rite of passage for our 6th graders every year…a three day camp experience filled with hands on education in oceanography, marine biology and ocean fun!  Rolf had the privilege of going with Max and this year it was my turn!  I admit I was quite nervous leaving Rudy…it was a huge effort to leave town…but I’m so glad I went.  It was an amazing experience to share with Olivia and her classmates and I welcomed going to a completely different world for a couple of days.  We went day and night snorkeling, kayaking to a world-famous kelp forest, tide-pooling in the camp’s beautiful cove and had lots of “classroom” time petting sharks and learning about fish, plankton & algae.  As much as I loved growing up in the Midwest, I kept telling the kids how lucky they are to live in a place with access to such beauty….they just looked at me like I was crazy (ha, ha)…they’ll get it someday.  🙂  I thought about Rudy A TON while we were on the island…about how much he would love to do the things we were doing and it made me even more grateful for Camp del Corazon (camp for heart kids) as it is also located on Catalina Island!!!!  Camp del Corazon purposes to give heart kids a “normal” summer camp experience in a safe, medically monitored  environment!  I sure can’t wait until Rudy is old enough to go (summer of 2015)…he’s going to have a blast!!!  🙂

Oma and Opa flew in from Alabama while Livy and I were still on the island but we all finished out the second half of their visit together and had a great time…lots of walks around the cul-de-sac with Rudy and lots of schnitzel! Yum!!!

I’m looking forward to the Thanksgiving Feast at the Rescue Mission next week…it’s always such a privilege to celebrate with the SBRM residents and homeless guests!  As we begin our Thanksgiving preparations and look ahead to Christmas, I pray we’ll have many moments to stop and savor all that is good and rich…we have so much for which to be thankful!  🙂  Happy Day Day Everybody!!!

Celebrating 21 years – November 7, 2013

 

 

As is typical this time of year, we’ve had a full schedule the past two weeks since we brought Rudy home from UCLA so I apologize for not updating on Rudy’s post op status.  He is healing nicely and seems to be adjusting well to the closure of his “extra airway”.  His new found ability to hold his breath and all the new sensations associated with the closure are curious to him, I think, be he hasn’t skipped a beat.  We have a post-op appt with his ENT at UCLA on Monday.  I’m preparing myself for the fact that it might be our last appt. with Dr. Shapiro for awhile…kinda strange!  🙂  Unfortunately, Rudy has struggled a bit this week with low O2 sats, fever and lethargy.  It has been concerning but I’m hoping it’s just a bug that will pass quickly.  Rudy hasn’t let it take away from today’s Halloween fun though!  Rolf and Olivia (and Max too) worked hard on Rudy’s TOTALLY AWESOME costume so you’ll need to scroll down to see their finished product!  🙂

All this fun led to tonight’s BIG NIGHT…

‘Hope you all had a fun Halloween too…lots of treats with a minimal amount of tricks!!  Happy Day!

 

 

Rudy and I made it home from L.A. just in time to say “hi” to Rolf and the big boys as they headed out to their various evening commitments,  Livy made Kraft macaroni and cheese for the two of us for dinner…YUMMY!!!!, and now it’s time to get some sleep!  ‘Just wanted to say “thank you” before this day comes to a close.  Rudy is tolerating the stoma closure beautifully and it’s nice to be home…we’ll keep him home the next few days and follow up with Dr. Shapiro in two weeks.  Thank you for your prayers.  Nighty Night!

 

 

 

 

Rudy did great today! He was out of the OR by 9:30am but we had to hang out in the PACU most of the day waiting for a bed to open up in the PICU. Nurse Joseph treated us right with a big selection of movies and even scored me a coveted comfy chair while we waited. We finally got settled in the PICU at 4:30pm. I thought for sure Rudy would fall asleep once we got settled but it’s 7pm and he’s still sitting up happily greeting everyone who walks in the room…Mama is tired (up since 3am) so he may be on the nurse’s watch here soon if I fall asleep before he does! Ha ha ha. So grateful for the good care he’s getting once again in this familiar unit and so grateful for a successful procedure all around. Thanks for your prayers! Sent from my iPhone

Rudy was a happy little monkey for our 4am departure from Goleta and our 6am arrival to UCLA…Rudy’s attempt at “thumbs up” on Valium right before he left for the OR! All is on schedule so far today…thanks for your prayers!

After a string of some pretty fantastic celebrations (the Heart Walk, Rudy’s 5th Birthday, the Rescue Mission’s big annual fundraising event, La Patera Fall Carnival),  last week was filled with some pretty important fall “to dos” in Rudy’s annual calendar including his IEP (Individual Education Plan) meeting.  My first impression when I walked into the room of teachers and specialists was “Wow!  Small crowd!”.  Ha  Rudy’s last two annual IEP’s involved both the county AND district personnel and the room had easily 18+ people in attendance…now that Rudy is solely at GUSD, we had a more intimate discussion with 8 including his classroom teachers, his classroom nurse, the district nurse, speech therapist, adaptive PE teacher and psychologist.  As always, there was much to discuss as we reviewed last year’s goals and heard the proposed goals for next year.  We are encouraged by the progress Rudy has made and as much as we value all that the county program offered Rudy, it’s so nice to have him closer to home and settling into his own neighborhood school district.  And, once again, Rolf and I walked away humbled by the number of quality individuals investing in Rudy’s education so significantly.  We are so grateful!  There wasn’t any talk of adding time at La Patera Elementary as part of a “blended schedule” for Rudy but this is still on the table and details for that arrangement will be ironed out in the coming weeks…which is fine because our focus is now on getting Rudy past this week’s surgery.

 

Rudy has his stoma closure surgery tomorrow.  ULCA just called and Rudy’s procedure is scheduled for 7:30am which means we have to report to registration at 5:30am (which means we’ll be leaving SB at 4am – FUN).  It’s a minor surgery for Rudy but because Dr. Nina and her fellows/residents need to cut around the stoma, remove scar tissue and then stitch him up from the inside out, it’ll be a minimum of 2 hours in the OR and will require an overnight (possibly 2 nights) for observation.  I’m praying he tolerates it all well, of course, and is protected from infection as he heals.  It’s been so long since he’s had a surgery involving an incision that I kind of forgot about all the pre-op stuff we’ve had to do this past week (blood draws, DCing aspirin for 10 days before surgery, dr. appts, etc) and all the post-op wound care we’ll have to be on top off to keep him infection-free.  I LOVE that it’s been long enough to forget details like that but I don’t like that  it has made for a mad scramble this past week!!  Ha Ha  Thank you for your prayers!  I’ll post an update after tomorrow’s procedure.  Thank you – thank you!