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 🙂

A perfect 4.0!!!

Lots to smile about; and nobody smiles like Rudy!

July 6

rudy smile

I think Rudy likes being home almost as much as we like having him here. We enjoyed seeing him make it through his first week ever without a doctor’s appointment. Given some of the med changes we’ve made over the past few weeks, we were curious as to what the report would be at his check-in with the cardiologist today.

We’ve gotten pretty good at reading chest Xrays, but echocardiograms are still very mysterious. The process involves sitting quietly in the darkened room waiting as multi-colored blips flash across the screen accompanied by the sound of rhythmic pulses. Lots of different measurements are taken and the print button is regularly hit when there seems to be a splotch worth capturing for posterity. Only when it’s all over does the verdict come–and this time it was a good one. Dr. Harake feels that there is nothing about Rudy’s heart function such that we need to schedule the Glenn. Rudy can keep on enjoying life at home and continue eating and getting bigger (today he weighed in at 15 lbs 5 oz!). His next appointment with the cardiologist is in early August so if his O2 sats remain in the 70s (today he came in at 77!) and there are no changes in his heart function between now and then, we have a real good chance of holding off on the Glenn until the fall.

As far as the lab work, we were very curious as to his Potassium level as this needs to be closely watched and balanced for proper heart function. Among the recent med changes, we discontinued Potassium supplements, so we were interested to see what his level was. Turns out you not only want to see a 4.0 on your kid’s school report card; it’s also the number you want to see when your checking the potassium level in his blood. And that’s right where it was–Rudy is doing great inside and out!

Happy 4th of July!!

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).

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:

Olivia helping John with the raffle drawing!

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

This just in from Rolf and the kids on their way to see fireworks!

Clean, Sober and Nine Months Old!

Today is a milestone day for Rudy. He turned nine months old! Nine months full like we never could have imagined. In looking back over the pictures since October, the way he’s developed is remarkable, but I’m also very aware of the traits that are taking shape inside him. In overcoming all that he has, Rudy has been a model of tenacity, perseverance, patience and contentment. I can look at him in one light and see a frail little baby; but then I look at the way his chest pumps up and down, stretching the various scars from all of the different procedures and I see toughness personified. He’s fought hard to get here and we are so proud of our little man.

Today is an important milestone of a different sort. Our friends in the recovery community will be pleased to know that today is his CLEAN date. An unavoidable byproduct of what he’s had to go through is that Rudy has not lived a day of his life without narcotics…until today. In most hospitalizations, patients are able to use narcotics for limited periods without any lasting impacts, but given that he was there for seven months, five surgeries and all of the other pokes, prods and procedures, there was no way for him not to get addicted. In his last few months at UCLA, the team switched him over to methadone (the slower acting, longer lasting narcotic they sometimes use to help people get off heroin). Even this had to be weaned very slowly as Rudy had some tough bouts of withdrawal the times we went too fast. He came home on .3ml every 8 hours (which is already very little, but too much to cut cold turkey) and we have been stepping him down about .02 ml every 5-7 days. We brought him down to .03ml last week (a fraction of a teardrop) and cut him off today. We stood ready with the Tylenol in case he looked like he was struggling, but he didn’t require any of it. We’ll have to watch him for the next few days, but in the meantime I’m now looking for an age-appropriate big book in case we need to start working the 12 steps. Anybody want to be his sponsor?

It’s great to have our little addict in recovery, but that doesn’t mean medications aren’t a big part of our life. He’s still on 11 different prescriptions (for all you pharmacy geeks or heart parents: Digoxin, Captopril, Spironolactone, Diuril, Lasix, Albuteral, Atrovent, Levothyroxine, Aspirin, Bactrim and a Multivitamin). We do meds at 6am, 2pm, 6pm and 10pm. The biggest batch comes at 6am just after the food pump alarm goes off to signal the end of his overnight feeding–more reliable than an alarm clock. The other morning I had the presence of mind to snap a picture of our little pharmaceutical operation. Rudy will always be on some medications for the rest of his life, but we don’t expect it to be this many and we celebrate each time we get to move another bottle over to the dormant section of his tray. I think there’s five there now, so we’ve made some progress. Go, Rudy, Go!

Breakfast of Champions: Rudy's morning meds lined up and ready

Heads Up!

Rudy working on neck control during therapy

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! 🙂

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…

More Photos

Just as I was posting “Full Hearts” last night with a few of the dedication pictures, Greg Lawler posted a slideshow on his website of ALL the dedication images! If you’d like to see more, here is the link: http://www.zinkwazi.com/?show=2009_rudys_party

Thank you Greg!

Full Hearts

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

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.

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?

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

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!

Seven (or so) Habits for Highly Effective Babies

Sorry for the delay between posts. The “no news is good news” maxim holds true. Been a great week here in Santa Barbara–some beautiful summer weather (sunny but comfortable in the 70s) came and we’ve been loving it. Max has been at track camp and Wilson at kayak camp, so they come home every day with tales of adventure. Throw in a good afternoon swim or two, end up sleeping well. Grandpa went back to Kansas to start his next round of chemo and Grandma stayed to keep an eye on Rudy and the rest of us.

Rudy’s pediatrician appointment this week affirmed what we’ve been suspecting. He’s feeding well and he’s growing (14lbs, 6oz). We’re seeing steady development as far as his motor skills, too. He looks all around now–instead of just looking down and to the left as he did when he got home from the hospital. He kicks his feet and grabs at things with his hands–usually he’s most successful at latching on to his O2 line or G-tube, so we need to keep things tucked in as best we can. Most mornings we find him having rolled over on his side during the night. All of this is relatively minor for most babies, but when we think of how many months we watched him lying prone in the hospital, we get a kick out of these new developments. Of course none of these have the emotional impact of his smiles, which he does quite often for us, but we’ll never tire of seeing more.

We’re excited to see Rudy make progress now that we are tied into the team from the California Early Start program, who has been doing assessments over the past weeks and laid out a plan of action for us this week. I’m not sure if Steven Covey wrote any material for infants, but Rudy now has a set of clearly defined goals, each with it’s own action plan of clearly articulated steps. Rudy may be behind developmentally, but how many infants do you know with goal/outcome/action plan sheets? Slackers, all of them.

These plans will primarily be carried out by two therapists who will come to our house twice weekly. Major goals we’re hoping to achieve by his first birthday include sitting on his own, taking food from a spoon consistently and developing some basic communication skills. We’ll likely have some regular exercises to reinforce the sessions with the therapists and also appreciate your prayers for these areas. As simple as these milestones seem, we will celebrate them heartily when we get there. As so much of our attention has been focused on Rudy’s viability, it’s encouraging to be working on some normal baby stuff.

I’ve seen the camera out quite a bit lately so I suspect Trish will have some pictures posted shortly. Thanks for checking on us.