Long time, No post

Oh my, two weeks+ have passed since Thanksgiving and Christmas Eve is exactly two weeks from tonight! As is to be expected this time of year, each day is filled to the brim and the season is racing by. The Wednesday after Thanksgiving, Olivia and I flew to Kansas to help my mom celebrate her 80th birthday on December 1st. Rolf’s mom flew in from Alabama the same day to help take care of Rudy in my absence and it worked out for Livy and I to give her a quick hug in the airport as she arrived and we departed! Ha Ha Olivia and I had a wonderful long “girls” weekend with Grandma Jo doing and eating whatever we wanted! The rest of the family had a marathon weekend with Wilson’s Jazz performance at school and marching band gig in the Santa Barbara Holiday parade & Max’s theater arts class performance of “Got Broadway” at his school. Rudy managed all the craziness at home well and passed on going to all the activities involving applause! ha ha He is, however, enjoying other holiday sights and sounds…especially Christmas music and the bright lights on the Christmas tree! Rudy’s enthusiasm and energy is a joy to watch and he’s certainly taking his cues from the big kids!

Rudy is battling relentless congestion but he has been able to keep up with his therapy and school schedule. He is officially going to school “by himself” with the help of Nurse Marie and is adjusting very well. The loud bus ride is a bit distressing for him but once he gets to school, he is happy and motivated to learn. We’ve noticed a huge leap in his desire to verbalize and he is now saying two-word sentences such as “Hi Mama” and “All done”. It’s pretty thrilling and no matter how often he proudly repeats himself, it doesn’t get old! He’s even starting to “sing” a bit by inserting key words into songs. SO FUN! As always, it’s just so much more fun to show you rather than tell you about it…so sit back–this may take awhile…

Our last meal in the old kitchen...Wiener Schnitzel! The construction is now in full swing!

And Rudy’s last bath in the old sink…

Rudy helping me mail a wagon full of our Christmas packages at the post office the Monday after Thanksgiving...we endured searing looks from the line of customers behind us! Ha

Big Boy Rudy off to school without Mama!

I’ll never tire of hearing this…

Singing with Mama…

Drumming with Daddy…

And playing with Maxo…

_MG_4855 — It's also that time of year for posed family pics...here are a few from our family photo session...

_MG_4828 — Christmas greetings, laughter and love from the Geylings!

Caught Off Guard

I was very interested in seeing the Gabrielle Giffords and Mark Kelly interview on 20/20 Monday night. I knew it would be an inspiring report but I was not prepared for my emotional response to their story. Shortly after the start of the show, I felt the tears welling up and by the second commercial, I was literally sobbing. Now I admit I’m an easy mark…I’m known to get a little weepy over Folgers commercials (you know the one when the older brother comes home early from college for the holidays and surprises his younger sister when she smells the coffee he is making and they visit over a cup of joe before their parents join them in the kitchen? Classic!) and old reruns of “Little House On The Prairie” that I’ve seen more than a couple of dozen times (those darn heart to heart moments between Pa Ingalls and Half-pint get me every time!!!). So, yes, it doesn’t take much to get me reaching for the Kleenex box but I was quite surprised at how deeply I was moved by the remarkable progress Congresswoman Giffords has made since being shot and surviving severe brain injury just 10 months ago.

I’m not even sure what I got so emotional over…it was a well constructed report and the producers did a good job of building the story for the maximum emotional response but my response was less about the content and more about the images…I was fixated on the hospital video clips that showed the Congresswoman’s trach and her all-too-familiar medical supplies( I couldn’t help but compare them to what Rudy uses) and then was struck by the image of her in the interview looking bright and beautiful with barely a scar where the trach used to be. I was mesmerized by the familiarity of hearing her first whispered words (similar to Rudy’s) as she relearned not only how to talk but how to talk with a trach (!) and then contrasted that image with her animated responses to Diane Sawyer’s questions. Although the circumstances of her journey are vastly different from Rudy’s, there is much in her story that I can relate to and I couldn’t help but be profoundly encouraged. I have a new favorite quote that came out of the special. It wasn’t clear to me if the quote came out of their new book or was part of Diane Sawyer’s scripted report but it went like this… Their story is about “the courage you need when the life you live is not the life you planned and you learn there have to be many definitions of ‘a beautiful day’”. Yes, yes…so many definitions!!

On a much smaller scale, I hope we can be that kind of encouragement to others too. I was in Kmart the other day with Rudy and the cashier peppered me with a handful of very direct questions about Rudy while he rang up my purchases. He was visibly disturbed when I quietly explained that Rudy was born with half a heart. He stumbled through his next few sentences and as he finished processing my payment, he apologized for being too intrusive to which I replied “No, it’s okay. I don’t mind, besides, it’s important you know you just played peek-a-boo with a miracle!” The smile that came over that cashier’s face was priceless…I was smiling too and that’s not something I do very often in our Kmart. Oh, that God would bring more and more encouragement…and not only an abundance of encouragement for ALL of us but also the ability for us to recognize it and be touched by it when we do recognize it which will then inspire us to do more than we think is humanly possible. Thank you for being that kind of encouragement to us for so long. We are so grateful!

Speaking of videos and progress and talking and miracles…check out our little school boy reciting his abc’s!!!!!!:

19 Years and Counting!

Rolf and I celebrated our 19th Anniversary today. November 7, 1992 couldn’t have been a prettier day…the sun shone brightly for our 2pm afternoon wedding in Chula Vista, CA just south of San Diego and we were blessed to be surrounded by 250+ of our dearest friends and family. It was fun to look through our wedding album with the kids first thing this morning before they headed off to school…it has been a few years since I sat down to really look through our album now almost 2 decades old. It was nice to be reminded of so many fun memories…memories of that special day which led to the reflection of significant memories of the past 19 years and I’m struck this year by how very much Rolf and I have experienced together in a season that truly has flown by at, what feels like, warp speed…

Experiences that include our nightmare honeymoon in Hawaii, our life in South Central Los Angeles working with inner city kids and their families, our sabbatical and ultimate resignation from our work in the city, Rolf’s full time pursuit of his MDiv degree at Fuller Theological Seminary and the 7 odd-jobs we held between us to provide for our very young family at the time, the 8 homes we’ve lived in (yes, we’ve moved that many times!) since our wedding day, the birth of “Silver By Trish” and the conversion of Rolf’s “wood shop” into Trish’s “silversmith studio”, the births of Wilson, Max, Olivia and, of course, Rudy (a lifetime of experiences wrapped up in that little bundle alone), two trips to Europe to visit Rolf’s extended family and the countless holidays spent with our immediate families in Kansas and Texas over the years, the significant losses of my Grammie Fink, Rolf’s Tante Barbara, Aunt Elliott and Uncle Rixie, our nephew Seamus and niece Faoileann and my Dad just 16 months ago and now that distinct shift when life revolves less around our own passions and more around the interests and activities of our growing but still dependent children :). We’ve been shaped and molded, challenged and stretched in the nineteen years we’ve been married and, by God’s grace, most of it has been accompanied by laughter…even in the darkest moments we’ve found something at which to laugh. Thank you, Rolfi, for being an amazing father to our kids, a conscientious provider and a fun partner. Here’s to the journey we’ve walked so far and the path that is yet to be revealed…Cheers!

19th Anniver5 — A couple of "cool cucumbers" at the rehearsal 11-6-92

19th anniver — "Great is God's Faithfulness" INDEED!!

19th anniver2 — Our first introduction as "Mr. and Mrs."!

19th Anniver7 — Celebrating at Cold Stone Creamery - November 7, 2011

Halloween 2011

We sure enjoyed a fun and full holiday weekend which started with a quick visit from Uncle Steve and Aunt Michelle who were in California on business and ended yesterday with a day off from school (teacher in-service day) and a fun evening of candy-collecting! After all the fun of this weekend, none of us are ready to start another week of school, work, etc! Ahhhhh, time is marching on, indeed, Happy Halloween everybody and Welcome November! (Yikes! It’s November already!!!) 🙂

Steve and Michelle — An overnight stay for Aunt Michelle and Uncle Steve in Goleta!

school parade — Rudy the cowboy attended Olivia's school "Hat and Mask Parade" on Friday. Olivia and her class made very cool lobster hats!

school parade2 — Rudy the overwhelmed cowboy and a bunch of Livy's classmates...

Halloween preparations continue on Friday with pumpkin carving fun at church...

buddy2 — Celebrating Asst. Coach Buddy's 62nd birthday with fellow-Charger Josh after the game on Saturday!

Halloween2 — Dr. Rudy and his patient Max...

Halloween4 — The mad scientist and her Frankenstein creation...aka Olivia and her good friend Dahlia!

Halloween6 — Sorting is a little difficult with Rudy in the mix!

Halloween7 — Wilson's anguish...this is a tough time of year for his fellow M&Ms!

Sluuuuumber Paaaaartaaaaay!

So, the bad news is Rudy’s feeding pump broke on Thursday night and crApria can’t get us a replacement until Monday. It’s not a danger for Rudy but it does mean that Rolf and I have to strategically alternate feeding Rudy manually via the g-tube a couple of times throughout the night…a bit reminiscent of nights with a newborn again. Ha Ha Rudy doesn’t know the difference and sleeps through it all anyway…Rolf and I, on the other hand, are a bit blurry-eyed. After the alarm sounded at 3:00am last night (or should I say “this morning”), I couldn’t go back to sleep!!! BUT, there is a flipside…the good news is because Rudy didn’t have to be all hooked up to the pump last night, he was free to join the big kids in their weekly Friday night movie/slumber party! Olivia and Max excitedly set up the necessary blankets, comforters and pillows and proudly propped Rudy up between them. By 3am, Rudy managed to make his way to the foot of their set up on the floor but slept soundly all night long. Even Wilson decided to stay on the couch all night (he’s old enough now to prefer sleeping in his own bed and usually wanders off to bed when the younger ones fall asleep). Rudy woke up at 6am pretty giddy to find himself surrounded by sleeping sibs and systematically woke them all up by kicking on the cabinet under the T.V. Sooooooo fun!

photo 3 (2) — "Schlaf gut" little ones...

I don’t know though…with school and sibling slumber parties, Rudy is getting a little big for his britches and typical toddler behavior is setting in! Today during his bath he said a very articulate “NO” to just about everything I tried to wash! Ha Ha And so it begins…

“This is the way we go to school, go to school, go to school…”

Today was Rudy’s first day riding the school bus to school! Because of Rudy’s need for supplemental oxygen, it is required by the district that he be accompanied by a LVN so the plan will eventually involve a LVN coming to our house, riding with Rudy to school on the bus, staying with him during his class time and then riding back home with him on the bus. That will be an amazing day but until an LVN is hired and all is in place, I get to go! My last ride on a school bus was roughly 30 years ago. -Ha I guess a ride on a yellow school bus can be a little mundane but there are two things that are special about Rudy’s bus…1. It has a cool wheelchair lift AND 2. His bus driver’s name is RUDY!!! 🙂 Rudy is originally from Haiti and very sweet to the three boys who ride this particular route with him…

bus3 — Rudy chillin' on the bus with his signature leg cross...he's a cool cat!

bus7 — ... happy welcome from Max and Olivia!

We also managed to squeeze in a cardiology appt. with Dr. Harake this morning before school. The team of doctors down at UCLA had a chance to discuss Rudy’s 9/22 heart cath results and are all in agreement that our next step should be to schedule another heart cath in 6 months (tentatively scheduled for March 21) to coil the remaining collaterals. You’ll recall that Drs. Dan and Harake coiled two large collaterals during the 9/22 cath to control Rudy’s blood flow but there is actually a web of collaterals that have developed over time and the team agrees that it will be necessary to go in and coil as many as possible…once that is done, if Rudy’s O2 sats remain the same, no further intervention will be necessary and we can continue to wait for the lungs to heal. If his O2 sats drop, then it will be necessary to either put a stent in his Sano Shunt (the shunt placed in his Norwood procedure) to open it up and allow unrestricted blood flow or replace the shunt altogether with a larger shunt. It sounds like a reasonable plan to us. Today’s echo (btw, Rudy’s new word for the day is “echo”) showed the same narrowing of the aorta that Dr. Harake saw 2 weeks ago…the angioplasty didn’t open it up enough so a stent may necessary in the aorta as well. We’ll check in with Dr. Harake again in a month. In the meantime, he and a number of Rudy’s UCLA doctors are heading to Peru for their annual humanitarian medical trip…we wish them a safe and productive trip and good health for Rudy while their gone. 🙂

Happy Days!

“School Days, School Days”

Rudy had another full day today…it started out with his OT and PT therapy at the CCS Clinic this morning. Tuesdays are particularly fun at therapy because we get to say “hi” to our sweet friend Gwendolyn (who gave him the CUTEST birthday present EVER…stay tuned!) After therapy, we had a quick lunch break at home and then we were off to Rudy’s first day of school. It was pretty special and nothing captures it more than a few pictures…

_MG_7841-blog — Rudy's first day of school couldn't have been a prettier day.

_MG_7851-blog — Clearly, this school was meant to be Rudy's...check out the sign's advertised fundraiser at McDonalds!!!

_MG_7871-blog — A nice welcome from Teacher Christy and fellow classmate...

_MG_7906-blog — Deciding what to do next...

_MG_7998-blog — So much fun to be had...

_MG_7993-blog — Saying goodbye to Daddy.

_MG_8033-blog — "Bye, Bye Daddy and personal papparazzo Greg"

Some table-time with an IPad...Rudy really likes the IPad!

Rudy lasted all three hours and had a real positive first day. We’ll go again on Thursday and possibly try 3 days next week. The County Education Office is still working on hiring an LVN and arranging bus transportation so I’ll continue to accompany Rudy for the time being.

I promised Olivia a trip to Lane Farms after school to buy a pumpkin so we ended the day with a quick trip to their pumpkin patch…Rudy wasn’t particularly impressed but he did have a pretty long day. 🙂

School….pumpkin patch…farm animals…Fall is officially here! Happy Fall dear friends…

Introducing Dr. Woo

Rolf, Rudy and I started our day at 4:30am and were on the road by 5:30am to make our 8am appointment with pulmonology at UCLA. We were excited to finally meet Dr. Woo who recently joined the UCLA roster of pediatric pulmonologists. You may recall that we sought her out as a second opinion through our insurance a few months ago only to discover shortly after that she was going to be Dr. Pornchai’s replacement at UCLA!!! One of the reasons we wanted to talk with her specifically is because of her specialty in pulmonary hypertension and lung/heart issues.

We like her very much. She’s personable and easy to talk to. She was smitten with Rudy from the start and familiar with his case as she had talked with Dr. Dan before our appointment. In a nutshell, she feels our current drug therapy for Rudy’s pulmonary hypertension is the right approach. She is not too keen on the idea of weaning Rudy from the trach without him passing a sleep study but also recognizes the fact that it will be hard for Rudy to pass in the sleep lab environment so she is putting an order in for a home study. It will require him being observed and monitored 2 or 3 nights in a row but I think he’ll have a better chance of passing it at home. So, we’ll see her again in three months and in the meantime, we’ll work on getting the sleep study arranged.

After the heart cath, Dr. Nina (ENT) asked us to start capping Rudy’s trach again to get him used to breathing through his mouth and nose in preparation for decannulation. Because of Rudy’s cold, we weren’t able to cap him until this weekend. We had him capped all day yesterday and today and although he doesn’t like it at first, he does adjust quickly and seems to be doing okay with it. He is maintaining O2 sats in the high 70s/ low 80s…so we’ll continue to cap his trach during waking hours and hopefully this will be good practice for the sleep study too. Capping his trach, however, means he has to get his supplemental oxygen through a nose cannula and he fights us when we put it on. Olivia said the nose cannula makes her sad because it reminds her that Rudy has HLHS (me too Livy) so it’s an adjustment for more than just Rudy. Thankfully, he doesn’t mess with it much once it’s on so we’ll see how it goes. Rolf did a good job distracting him with a game of ball last night…

So, we have a couple of things to work on between now and the end of the year. In addition to all this, Rudy has his first day of school tomorrow! Considering the long day we had today, I guess we better sign off for now and get a head start on a good night’s sleep tonight. Sleep tight everyone…we’ll post more tomorrow.

Heart Walk 2011

Yesterday’s Heart Walk was another special memory maker. A fun group of friends gathered at Fess Parker’s resort to walk with us, the “Team Rudy” tent had a great view of the ocean and the weather couldn’t have been more gorgeous. All were happy and had a fun time except, of course, the birthday boy!! Last year, Rudy slept through the whole thing. This year, Rudy was set off by the cheering crowds at the start of the walk and didn’t really settle down at all until we finally got him to the tent (after about 2 1/2 miles), stripped him down to his diaper and laid him flat on a comfy blanket on the grass. Leave it to mom to plan a birthday celebration in the midst of 700 enthusiastic Heart Walk participants for a little half-heart who doesn’t like crowds! Ha Ha Oh well, after a quick nap, Rudy woke up happy and enjoyed the quieter celebration with friends who lingered awhile after the walk.

_MG_7340-blog — All set up and ready to go!

_MG_7348-blog — The "Moms with Heart" table...raising awareness as well as funds 🙂

_MG_7355-blog — Rudy BEFORE his meltdown!

_MG_7366-blog — A strong "Team Rudy" presence at the Opening Ceremony

_MG_7379-blog — Rolf the "Passion Speaker"

_MG_7445-blog — Rudy's SB cardiologist Dr. Harake and Dr. Soffici who first discovered Rudy's HLHS in a routine ultrasound.

Rudy and some of the Dos Pueblos cheerleaders--including our neighbor Stacy (front and center)!

_MG_7466-blog — An enthusiastic start for all of us...

_MG_7515-blog — Wilson and Mama trying to cheer Rudy up!

_MG_7518-blog — Meeting up with Max, Olivia and friends at the halfway mark--for them, it's more of a heartrun than a heartwalk.

_MG_7601-blog — Ahhhhh, Rudy finally found a comfortable spot...

Thanks to so many of you, Team Rudy was ranked the #1 “Mom’s with Heart” fundraising team with a total of $10,486.00! Amazing!! Thank you all for your donations and prayers. Now it’s time to start another week that includes our first appointment with Dr. Woo (Rudy’s new pulmonologist) at UCLA bright and early tomorrow morning and the start of preschool on Tuesday! ‘Lots coming up…stay tuned 🙂

P.S. Thanks, Greg, for capturing the day in your trademark great pics!

Heart Walk Eve

It’s Friday night and we’re all getting ready to hit the hay a little early but many have asked if Rudy got to go to school on Thursday so I wanted to post a quick update. Although Rudy sounds and looks much better today, he was still quite junky yesterday and so we had to keep him home from school again. He took advantage of another day off and had a nice, long nap. I imagine we’ll have a green light to go on Tuesday so stay tuned… 🙂

Rudy went with me to church this morning to help me prep for Sunday’s worship…Wilson better watch out, it looks like Rudy may want his gig:

We hope to be up and out of here early tomorrow morning to set up our “Team Rudy” tent along the Heart Walk route. We’re all looking forward to a special day tomorrow. We’ll be sure to post a fun recap of the Heart Walk asap. Happy walking friends!