Run, Grandpa, Run!

    Run, Grandpa, Run 002

 

 It was March of 1998 when Wilson attended his first “Grandpa Dick” road race in Santa Clara, CA sporting his “Run, Grandpa, Run” tshirt and very first pair of Nike running shoes!  (I’d like to know how many of my Dad’s races I attended over the years.)  Well, Olivia and I are headed to Kansas today for a little family reunion with my parents, brothers, sisters-in-law and some of my nieces and nephews to, you guessed it, run (or, in my case, WALK) a race with my Dad in Topeka. 

     When Dad was diagnosed with brain cancer in October (the same week Rudy was born), the plan for everyone to come home and cheer Dad on at the race was put on the calendar.  Because Rudy’s second open heart surgery was likely going to happen right about now, we didn’t think we’d be able to make it but when the Glenn was pushed back, I was suddenly freed up to go!!!  I hate that I have to leave Rolf and the boys at home but I’m grateful Olivia and I can be a part of such a special time to celebrate and embrace family.  It will be a quick trip…a total of 48 hours but we’ll be sure to pack it full of fun.

     Like Rudy, Grandpa Dick is proving himself strong in the face of a life-threatening condition.  So many of you have commited to pray for him and I thank you…I know my parents appreciate the prayerful support as well!  Recent MRIs have not detected any new cancer growth since his surgery in October and we praise God for allowing the exsisting cancer to be held a bay.

     Life’s twists and turns and the timing of it all, of late, are curious to me and yet I’m so grateful for the assurance that, ultimately, everything is going to be okay…BETTER than okay because God’s hand is guiding every twist and turn and each step, if I choose to trust and not fight to control it all,  is one closer to His best for me…His best for Rudy…His best for Gpa Dick, etc…you get the idea.  🙂    Alrighty, it’s time to go fly those friendly skies…

KU Hall of Famer and NCAA Champ :-)
KU Hall of Famer and NCAA Champ 🙂

Happy 4th of July!!

USA! USA! USA!
USA! USA! USA!

 

Can you guess what our new contraption is?   Answer below:
Can you guess what our new contraption is? Answer below:

We had a full, fun Fourth of July celebrating at the annual Rescue Mission BBQ Bash…a special time with our homeless guests, staff and residents complete with a fabulous bbq buffet thanks to chef Pat and his crew and carnival games (thanks Sherry and John!).  Olivia and Max went early with me to help set up, Wilson and Rolf hung back with Rudy until the event started.  Rudy spent most of his time tucked in his stroller in the shade but I think he liked his first 4th of July party.  We got home at the end of the day hot and sticky so we all jumped in the pool to cool off…Rudy couldn’t join us in the water  but has a new backyard patio pasttime he thinks is pretty cool (see pic below).

Time to celebrate!
Time to celebrate!

 

 

 

 

 

 

 

 

We end the day so very thankful for Rolf’s team at the mission…a special group of people willing to spend their holiday throwing a fun party for a group of folks who are normally asked to leave public events rather than invited to them!  The life of our family is richer for knowing them…here are just a few:

Me and Sherry!
Me and Sherry!

 

 

 

 

 

 

 

Eddie and a pie in the face!
Eddie and a pie in the face!

 

 

Olivia helping John with the raffle drawing!
Olivia helping John with the raffle drawing!

 

 

 

 

 

 

 

 

Clean-up crew?
Clean-up crew?

 Now for the answer to our teaser-question above…drum roll please…

It's a "Bag o' Rudy"!!!
It's a "Bag o' Rudy"!!!
This just in from Rolf and the kids on their way to see fireworks!
This just in from Rolf and the kids on their way to see fireworks!

Heads Up!

Rudy working on neck control during therapy
Rudy working on neck control during therapy

 

Show off!!
Show off!!

     The big boy had some “tummy time” for the first time in therapy yesterday and I think he liked the sensation of his head held high without any support.  He beared the weight himself  and was pretty comfortable as long as his fist was stuffed in his mouth!! 

      A couple of other noteworthy milestones is that Rudy now has a tooth on top to join the two that sprouted on the bottom…one tooth closer to In n’ Out!  And his right foot is finally free of his wound dressing as the last scab from the IV potassium burn he got back in late April  during hospital stay #2 fell off this morning.  Nurse Jane was impressed at its progress when she came to check on Rudy last week and affirmed us for making it through the 2+ month healing process without any infections or complications.  The human body amazes me in its ability to heal and Rudy’s body especially as he has had so many wounds from which to heal.  I’m struck by the number of scars on his little body and am led to pray that the physical scars far outnumber the scars of the heart…that, although he faces daily physical challenges, his life will be marked by a spirit of genuine joy and optimism. 

Rudy isn’t very good at “Hide ‘n Seek”

Well, we said goodbye to G’ma Jo yesterday which marked the end of our “month o’ grandparent fun”.  Although Rudy is definitely missing the extra Oma/Gma lovin’ he recieved, it was clear yesterday that he certainly isn’t deprived of hugs and kisses because Wilson, Max and Olivia gave him a continuous supply of both as they were in and out all day at various activities and adventures.  The way they were carrying-on, you’d think they were Rudy-deprived!  Ha Ha  It was so cute at one point, Rudy was asleep in the living room and at different times all three kids walked through the room, stopped to look at Rudy sleeping and made the comment that he is the sweetest baby…’so glad we’re all in agreement!  🙂

Sweetness!
Sweetness!

     Rudy had another great week of therapy here at the house.  We continue to work with him on grabbing for objects, head and neck control and turning onto his side.  It’s a little staggering to think about all he has to learn but it feels good to have a plan and be working toward specific objectives.  As always, “one day at a time”.  Rudy is so blessed to have three older sibilings ready to help him learn about all kinds of things.  The other evening Rolf went to Rudy’s crib to give him his 6 o’clock meds and was a bit startled to find he wasn’t there!  Rolf called out “Hey, where’s Rudy?” and proceeded to follow the long trail of oxygen tubing that extended down the hallway and around the corner leading into Wilson’s room.  Rolf found Wilson giving Rudy a tour of his room highlighting his dragon posters, bookshelf of spy novels and history books, his drumset and bins of toys in the closet that we are now saving for Rudy’s use in the not-so-distant future!  Having his oxygen tubing long enough to reach any room in the house is very convenient for us but, we discovered, puts Rudy at a severe disadvantage when playing a game of “Hide ‘n Seek”.  He’s not to worry, though; he won’t be tethered to the concentrator forever! 

     This next week will be his first “dr. appt.-free” week since we brought him home!!!  Yippy!!  It looks like we have been approved for a few hours of respite nursing care each week through the Regional Center (love them!!) so my focus this week will be to get the scheduling for that set up and in place.  Slowly but surely things are coming together and we are grateful.

     One last big thank you to all the grandparents for making the trip out to California this month…an effort we don’t take for granted!  As always, memory making moments…

"Everybody wave!"
"Everybody wave!"

 

 

Kisses from G'ma Jo
Kisses from G'ma Jo

 

 

 

 

 

 

Maxi captured this smile
Maxi captured this smile

Full Hearts

Happy Father's Day!
Happy Father's Day!
We had a special Father’s Day yesterday…we took advantage of Gma Jo being here and left Rudy home with her while the rest of us went to church together (we missed Rudy and Gma but it sure is alot easier to maneuver through a crowd without Rudy and his gear).  We stopped for, you guessed it, In ‘n Out for lunch afterwards and took it home to enjoy a patio picnic.  Rolf got a patio lounger for Father’s Day and was ordered to sit in it with a good book for a bit of the afternoon.  He felt pretty guilty “wasting” a perfectly good “house project” day until he was reminded of the numerous weekends at the hospital when he longed for a lazy Sunday at home!  After a fun, family walk around Lake Los Carneros to feed the ducks and climb trees, we feasted on bbq’d tri tip, veggies and Gma’s yummy potatoes.  We have a lot to celebrate in Rolf…his humor, playful spirit, faith, physical strength and sensitive creativity all translate into the way he parents and the kids are all able to articulate why they appreciate their dad.  Max definitely appreciates his dad’s playfulness, Olivia told me as she made her dad a card how much she loves her daddy’s rose garden (she delights in the roses he cuts for her to brighten up her room) and Wilson finds security in Rolf’s support.  I fell in love with Rolf all over again when he became a dad for the first time…and then again with each addition!   How grateful I am to be partnering with him on this road called “parenthood”.
Feeding ducks on Father's Day
Feeding ducks on Father’s Day

 

Climbing trees on Father's Day
Climbing trees on Father's Day

So, today is the start of another week and Rudy had his first therapy session with Gwen from the Regional Center.  It was a great session…Rudy lasted a whole hour, however, Gwen and I are convinced he played possum 30 minutes into the session.  After an exercise he clearly did not like to do, he closed his eyes and froze for a minute.  When we stopped talking, he peeked to see if Gwen was still around!  Ha Ha  He’s no dumby!!  Rudy is starting off with two sessions a week and I’m encouraged he’ll make fast progress…evenmore with therapists Max and Wilson around.  The boys took note of the “games” Gwen played with Rudy and she encouraged them to work with him too…needless to say, Rudy responds pretty enthusiastically when the other kids are involved!

Thanks to Greg Lawler, we have some pics to post from the dedication…stills certainly don’t do the whole evening justice but, once again, Greg’s ability to capture an experience is evident.  We treasure the time in our hearts and are deeply grateful for all that God has done in Rudy’s life so far.

Program passer-outers Livy and Max
Program passer-outers Livy and Max

 

Program anyone?
Program anyone?

 

Cheerful greeter
Cheerful greeter

 

"Guestbook"
"Guestbook"

 

a word of thanks from Rolf
a word of thanks from Rolf

 

A moment of worship
A moment of worship

 

Wilson keeping the beat!
Wilson keeping the beat!

 

A message from Walter H.
A message from Walter H.

 

A word from Bob D.
A word from Bob D.

 

Dedication
Dedication

 

Special music from Marlin and Grace
Special music from Marlin and Grace

 

Reception fun
Reception fun

 

Full Hearts
Full Hearts

 

'Slept through the whole thing!
'Slept through the whole thing!
A BIG Thank You to Santa Barbara Community Church for hosting our evening, the Santa Barbara Rescue Mission Women’s Auxiliary for the yummy reception, the program participants and our guests for making the evening so rich and all of our “far away” family and friends who were there in spirit.  Our hearts truly are full!

Saline, anyone?

Ready to suction!!
Ready to suction!!

     Ah-Ha!  EUREKA!!  After a search for sterile saline that lasted a few weeks and led, ultimately, to the discovery that it could only be acquired via a prescription and cost $47.00 a liter, our case of saline arrived today via UPS!!!  Twelve liters for the price of two…I LOVE the internet!!! 

     Rolf posted a very thorough update of our week earlier so I’ll keep my words at a minimum and share a few photos of our recent fun…

Special time with Oma & Opa and G'ma & G'pa
Special time with Oma & Opa and G'ma & G'pa
Kisses from Opa
Kisses from Opa
Lovin' from Oma
Lovin' from Oma
Tickles from G'ma Jo
Tickles from G'ma Jo
Hugs from Grandpa
Hugs from Grandpa
Listening to Max's Ipod
Listening to Max's Ipod
Finally...a smile!!!
Finally...a smile!!!
Goofball!
Goofball!
It was sad to say “goodbye” to Oma, Opa and Gpa this week but we have one more week of grandparent fun with Gma and then it will be “back to normal”.  We’re looking forward to another great week of progress for Rudy…and summer fun for the older kids.  Thanks for sharing in our joys as well as our sorrows.  ‘Wishing you a wonderful weekend!

A richness we’d have never known…

It’s time we should be getting on to bed, but I don’t think I can end the day without posting something.  Our time together at Rudy’s celebration reminded us that with the heartaches of this journey come a richness we wouldn’t have experienced otherwise.  We have felt such concern and support from so many over the last eight months, so it was so moving to have so many precious people in the same room.  Even more moving to see people make the drive from places as far away from LA, San Diego, Santa Cruz and Sacramento.  Thanks to all who came, to those who participated in the service and put on the reception.  More to come, but tonight our hearts are so full.  Thanks everyone!

OK to Go!!!

Rudy's scalp IV
Rudy's scalp IV

 

Rudy had a stable night and is back on track with his feeds and meds this morning so we are good to go home.  Rolf had the presence of mind to pack the car with 2 tanks of oxygen “just in case” so I have enough oxygen to get Rudy home…we’re just waiting right now for arrangements to be made to get the rest of the home set-up delivered to the house sometime today.  Once that is confirmed, we can load up and hit the road before afternoon traffic!!!  It has been great to connect with our buddies here at UCLA but Rudy and I are thrilled our stay has been a short stop in the CTICU/PICU!!  We’re excited to head home and join in the “last day of school” fun with the big kids.  Summer is upon us…YIPPY!!!!

There is Good News and Bad News

     It’s well past 10pm and Rudy is finally resting back “home” in the CTICU after a very long day.   Rudy’s adventure in the cath lab lasted about 4 hours this afternoon.  He was fairly calm in the PACU right after his procedure but by the time he was transported to the ICU for overnight observation, he was worked up and irritated.  It took some methadone to give him some relief but that’s understandable as his last feed was 4am, his last meds were at 6am and he had a very full experience  in the cath lab.  He did great and I’m so proud of him.

     Rudy had a wonderful team with him today.  Dr. Dan and fellow Dr. Leigh along with our SB Cardiologist Dr. Harake conducted the heart cath.  They ended up gaining access through the groin and neck.  Dr. Judith Brill knows Rudy well from her rounds as one of the PICU attendings but she is also a fabulous anesthesiologist and we were blessed to have her caring for Rudy today in that capacity.  Because they went through the neck, Dr. Brill had to suture his trach in place as they needed to take his trach ties off and he came back with an IV in his forehead.   So Rudy has a number of tender spots this evening that, I’m sure, are pretty sore.   Dr. Brill was our full-service anesthesiologist today because in addition to her official duties, she removed a couple of chest stitches that were hanging around way too long AND she swapped out Rudy’s g-tube for a new and improved button mic-key with a less bulky, low-profile.  Her willingness to do that for us saves us a trip to the hospital in SB as the swap was a bit too involved to do in our GIs office.  Not to make it all about me BUT Dr. Brill sure helped make my life a little less complicated today and that’s really nice!  Ha ha   The plan is to watch Rudy closely tonight to make sure he rebounds from today safely and if all goes well, we should be allowed to go home late tomorrow afternoon. 

     There is much to process from today’s cath.  In general, I think we have reason to be encouraged.  As Rolf mentioned earlier, the team called for consent to do an angioplasty in the right pulmonary artery because they detected some narrowing of the artery.  They also coiled the right collateral artery which, I think,  means the artery was tied off reducing the overall blood flow to the lungs.  This will prove helpful at the time of the Glenn but will make Rudy look a little more blue in the short term.  Dr. Brian was consulted and given the information gathered in the cath lab and everyone is in agreement that as far as the heart goes, things are looking good.  Rudy hasn’t quite grown out of his shunt yet which means we don’t have to rush towards the Glenn.  In fact, if we can keep Rudy’s sats in the 70s, we could POSSIBLY wait until Rudy turns one before we do the Glenn!!!!  Waiting 2-4 months for the next open heart surgery would allow us valuable time to get Rudy fattened up and stronger. 

     As has always been the case with Rudy, however, we are facing a challenge unrelated to his heart defect.  Today’s findings also confirm that his lung function is still weakened and not what it should be.  He just isn’t strong enough to expand his lungs fully.  This is chronic for Rudy as he has battled this condition from birth but it doesn’t necessarily mean it will be a permanent problem.  It will take time, though, maybe even up to a couple of years so we need to be prepared for Rudy to be oxygen-dependent even after his Glenn.  For now, the team’s recommendation is to send Rudy home on a continuous oxygen supply.  The extra support will allow him to focus his energy on growing as opposed to breathing and it will help him sat in the 70s – a more preferable range while we wait for the Glenn.  Sending Rudy home on oxygen certainly isn’t what we hoped for out of this trip to UCLA but I’m all for giving Rudy what it takes to keep him comfortable and help him grow in preparation for his next surgery. 

     Rudy has proven himself strong and an overcomer on so many occasions.  I trust he will catch up and develop GREAT lung function in time.  Please join us in praying specifically for his lungs and muscle strength in his chest!!!   Tomorrow will also probably involve some more training in how to care for Rudy on oxygen so please pray that we won’t be delayed in going home due to logistics.  It looks like we’ll have to pack away our candles and stay clear of open flames in general for a season until Rudy gets past this bump!  ‘Just another little adjustment in the larger scheme of things.  As always, one day at a time…