Archive for July, 2009

Happy V-Day!!!

July 31, 2009

This may be a post to file under “too much information”, but seeing as we’ve posted 400 times in the last year it’s probably way too late for that.  We had another medical procedure in our family today, but this time it wasn’t Rudy.  While some of the folks in my office thought I was taking advantage of a 3-day weekend, my day started off with a 30 minute procedure on this table.Dr. Table

 Very quick and efficient as far as doctor’s appointments go…yet permanently life-altering.  Not sure if we’ve mentioned here before that a heart condition was arguably only the second biggest surprise surrounding Rudy.   His penchant for beating the odds was there from the beginning given his deft maneuvering past countermeasures deemed 98% effective.  But 2% probability is still probability.  Shortly after Livy was born we had discussed taking more permanent steps, but that fell in a crack somewhere on “the list” between going to the dentist, updating the will and cleaning out the rain gutters.  But trust me.  We’re done.

Perhaps our family’s immersion in the medical world this past year has us in a place where such a procedure is discussed with surprising candor.  A generation ago I suspect Daddy would have just been feeling under the weather for a day, but I learned that Trish felt differently when the kids greeted me in the driveway a couple days ago with giggles and all kinds of curious questions.  Amazing how brutal things can sound when medical terminology is replaced with the lunch-table vernacular of elementary school boys and a conception of surgical precision has seemingly not progressed much past that of a Civil War field hospital.

In the consultation prior to my procedure protocol demanded that the doctor explain the finality of what one is about to undertake and assess whether the patient truly feels he is done procreating.  In my case, his quick glance at the medical history alleviated any need for further questions (“Let’s see you’re 42, kids aged 12, 10, 7 and……..9 months!  Sign here!”)   

In one of the brochures they gave me to read, I was advised to take stock of my current offspring and determine whether my life would feel incomplete without any more.  I don’t think it was to be read as a joke book, but I did find it funny.  I was urged to take some time and take stock of the situation and my hopes and dreams.  I have to confess, I didn’t do much of it then but this weekend of reclining and recuperating also affords some time for reflection.  Final score:  3 boys, 1 girl.  In terms of the Geyling family, amidst siblings who appear marginal in their ability to produce male progeny, I have done my part in producing three capable of carrying on the name.  In terms of the species, I have done my part to propagate exceptional traits in my offspring—one of intelligence, creativity and rhythm; one of athleticism, charm and humor; one of grace, beauty and artistry, and one with matchless tenacity and perseverance.

You’re welcome! 

 

PS.  Note to any dinner guests in the near future—you might want to decline the peas.

Making His Way Toward The Chart!

July 29, 2009
Playtime!

Playtime!

Rudy had another appointment with his pediatrician yesterday and weighed in at 16lbs 7oz to which the doctor exclaimed “Rudy is getting closer to being on the growth chart!”.  Woo – Hoo!  In regards to “normal” baby stuff, things checked out fine…he got three immunization shots and Olivia got his lollipop.  I have been delinquent in setting up appointments with the Immunologist and Endocrinologist in town and yesterday’s appointment reminded me of the pending authorizations so I came right home and got those appointments on the calendar.  I don’t think there are specific concerns but because of Rudy’s history with immune deficiences and low thyroid function, it’s good to have follow-ups with these specialists…I have to admit, though, I grow weary of introducing Rudy and his medical history to so many new doctors…it feels like we’re spinning our wheels a bit filling out the same forms over and over and repeating the same information over and over for each new doctor’s records but I guess that’s part of “establishing a team”.  Over time the doctors here in Santa Barbara will grow to know Rudy well and there will be security in that but for now, almost THREE months post-discharge, I still feel a little lost and scattered in the menagerie of Rudy’s care-management.

Rudy doesn’t seem any worse for the wear, though.  He has been feeding well, smiling more and reaching for objects held out in front of him more and more.   Our lazy days at home may be a little boring for me and the older kids, but Rudy sure loves ’em. 

Handsome 013

Handsome!!!

July 21, 2009

Rudy may be behind in many ways developmentally but no one can argue his stellar performance in the hair-growing department.  After Dr. Rick accused us of blow-drying Rudy’s mane to get that frothy trademark look of his, I decided it was time to give the boy a real haircut.  Wilson and Max didn’t have their first “big boy” haircuts until they were nearly 2 yrs. old…Rudy was way overdo at 9 months!!!  So, with Rolf’s help holding the poor boy upright and still, the curls fell fast with every snip of my scissors.  What emerged is a handsome boy looking well beyond his years (or months?).  In addition, now that the rest of his hair is shorter, his bald spot in the back doesn’t look quite as obvious!

Rudy was pretty happy with his old look!

Rudy was pretty happy with his old look!

He's a little suspicious!

He's a little suspicious!

NOT liking the experience!

NOT liking the experience!

The many faces of Rudy…
TAH-DAH!

TAH-DAH!

Handsome 007

Handsome 009

Handsome 012

Happy to be done with the whole thing!

Happy to be done with the whole thing!

 

Another precious milestone under his belt!

Is There A Doctor In The House?…

July 14, 2009

Actually, there were TWO!!! 

Dr. Rick and Dr. Susan

Lucky for us, Dr. Rick and his wife Dr. Susan were in town early this week and had time to stop by for dinner Monday evening.  What fun it was to see them both and catch up while enjoying a summer BBQ rather than seeing Dr. Rick in the context of discussing Rudy’s medical condition bedside in the ICU.   We tried hard not to pepper him with questions about work and the goings on at UCLA but it sounds like all are well.  Although Rudy slept for a good bit of their visit, he did wake up long enough to study Dr. Rick’s face trying very hard to place him, I think.  We were encouraged to hear Rick say that he thought Rudy had good color and appeared to be thriving at home.  It’s SO FUN to have confirmation from someone who knows him so well!!!  Rolf and I highly respect the professional relationship we have with Rudy’s medical team but we are also so very grateful for the emerging friendships within those professional boundaries…it sure helps to make the serious steps ahead in Rudy’s journey alot less intimidating!

 

Earlier on Monday,  Rudy had therapy with Gwen and OT Chris.  After the session, they assessed Rudy’s developmental level as that of a 4-month old.  He’s definitely improving but we need to be prepared for the process to be a slow one.  I found the information helpful…specifics to direct my prayer for Rudy in these weeks before the Glenn.   The more he can master now the better but we also don’t want to overwork him…as always, a fine balance.

A Tale of Two Weekends

July 12, 2009

Our family had two eventful weekends in one.  First, Trish and Olivia got to go out to Kansas for a mini family reunion with the Wilsons.  The highlight was joining Grandpa and “Team Wilson” for a 5k run/walk.  Rudy joined along in spirit as G’pa Dick competed with a pair of Rudy’s “running socks” pinned to his number.  Team Wilson dominated the course with Wilsons in the front of the pack, holding steady in the middle and bringing up the rear throughout the race and EVERYONE finished with a smile on his/her face.  G’pa won bragging rights as the #1 male walker of the day with his good friend Bob coming in a close second!  Olivia was determined to walk too and finished despite the heat and humidity…not quite sure what she thought of humidity (ha).  She also experienced her first Midwest thunderstorm AND the thrill of catching never-before-seen lightning bugs!

Livy stretches out with Grandpa and cousins Rachel and Emma before the race

Livy stretches with Grandpa and cousins Rachel and Emma before the race

 

Thumbs up at the finish line!!!

Thumbs up at the finish line!!!

Another win for G'pa Dick!

Another win for G'pa Dick!

Team Wilson

Team Wilson

A rare "sibs pic" with big bros Rick and Steve :-)

A rare "sibs pic" with big bros Rick and Steve 🙂

Back here in Goleta we had a full weekend of our own.  Before I get into the details I have to mention the Rescue Mission graduation on Saturday night.  We celebrated the achievements of a dozen heroes who completed their twelve months in the recovery program.  Thanks Heather, Jessica, Kelly, Nanci, Rachel, Andrew, Ben, Cal, Edward, Jay, Morris, and Sergio for being examples of how intimidating struggles are best approached by leaning on the people God has placed around you and by taking things one day at a time.  I love what I do in that it gets me a front row seat to watch lives transformed. 

Stepping back from the profound, Wilson and Max declared this weekend to be a “DUDE-CATION” as all the females in the family had vacated the premesis.  I was glad they took time to brief Rudy on the elaborate wild-man rites undertaken when boys find themselves separate from girls for extended periods of time (because I needed a refresher).  Turns out there’s quite a bit of freedom to be taken with bodily functions and noises–and more extensive and detailed conversations regarding them than I ever thought.

On a true dude-cation, all meals must  be eaten without utensils.  Considering there was toast and sandwiches in good supply, this was easily done, but I thought there would be an exception made when it was time for lasagna.  Turns out Max’s commitment runs deep, even when the melted cheese singed his fingers.

Max Lasagna#1

 

max lasagna #2

 

 

 

 

 

 

 

 

You laugh a lot on a dude-cation, which is always welcome.  True dudes also laugh in the face of danger.  While anyone can enter the pool the conventional way, it’s much more fun to do something daring:

Wilson Roof Jump

Wilson

Max Roof Jump

Max

OK, I know.  Responsible parents wouldn’t let their kids do this, but after you let them roll your six-day-old down into the OR for heart surgery your notion of what’s dangerous gets altered.  Not to mention, it just plain ROCKS!  Rest easy, there’s no picture of Rudy engaging in the ceremonial Dude-cation roof leap…yet.  I guess you’ll be sending your kids to someone else’s house when you go out of town for the weekend.

Rudy Climbs a mountain

July 10, 2009

Even though some kids with heart defects can’t go to upper elevations, Rudy went on a high-altitude adventure (kind of).  Nurse Aliza spent the last few weeks hiking the John Muir Trail and took him along. 

 

Aliza bracelet

Aliza bracelet2

Thanks for sporting your handsome Rudy bracelet, Aliza–Rudy and Lance make good company.  If anyone else happens to take Rudy on an adventure, we’d love to hear about it.

Run, Grandpa, Run!

July 9, 2009

    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!!!

July 7, 2009

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!!

July 4, 2009
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!

Clean, Sober and Nine Months Old!

July 1, 2009

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

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