Happy 4th of July!!

USA! USA! USA!

 

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!

 

 

 

 

 

 

 

 

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!

 

 

 

 

 

 

 

Eddie and a pie in the face!

 

 

Olivia helping John with the raffle drawing!

 

 

 

 

 

 

 

 

Clean-up crew?

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

It's a "Bag o' Rudy"!!!

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

 

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!

     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!"

 

 

Kisses from G'ma Jo

 

 

 

 

 

 

Maxi captured this smile

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

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

 

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 anyone?

 

Cheerful greeter

 

"Guestbook"

 

a word of thanks from Rolf

 

A moment of worship

 

Wilson keeping the beat!

 

A message from Walter H.

 

A word from Bob D.

 

Dedication

 

Special music from Marlin and Grace

 

Reception fun

 

Full Hearts

 

'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!!

     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

Kisses from Opa

Lovin' from Oma

Tickles from G'ma Jo

Hugs from Grandpa

Listening to Max's Ipod

Finally...a smile!!!

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!

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.

Super Rudy!

While everyone was understanding, the only thing that would have improved Friday evening’s dedication service would have been for Rudy to be awake for more of it.  We are really grateful for the way he has developed since bringing him home–he’s much more aware of his surroundings, looks all around (instead of just down and to the left) and is even starting to grab for things.

This week we’ll be getting our first home visit from the OT/PT team, but in the meantime I’ve gotten a bit of a jump on things with my own regimen.  Click to watch a video Rudy’s latest trick:

From

Still basking in the afterglow

As I posted briefly on Friday night, this weekend I’ve been very aware of the richness we find in the unexpected.  We didn’t expect Rudy to join our family.  We certainly didn’t expect him to have to battle like he has.  I’ll go as far to say I hate that he has to battle like he does.  I’m quite certain I’ll never get to a place where I can wholeheartedly say I’m grateful for his condition.

But yet I’m so grateful right now.

Grateful that within that which has scared us like nothing else in our lives, we have found comfort.  We have found empathy and companionship that truly lifts the soul.  We have seen character, compassion and fortitude blossom in our kids.  We’ve learned about our own endurance and ability to function in the midst of extended challenge.  We’ve met people who amaze us in their expertise and devotion.  We’ve been blessed and been made aware of God’s goodness in brand new ways.

I am so grateful for Friday night’s dedication celebration.  Life can become a blur in the land of critically ill children.  Stints in the hospital can go on indefinitely.  One can emerge from one set of challenges only to face another.  The goal of survival can trump a balanced engagement of life.  Instead of feeling involved in things, you struggle with how much you’ve missed.

Having a clear milestone amidst the disorientation is precious to us.  We were able to look back and rejoice over what Rudy’s overcome.  We were able to set our sights forward and pray for his future—a thoughtful, hopeful prayer rather than a rushed and panicked one in a hospital hallway.  We were able to be together with so many precious people who have helped us in shouldering this burden.  So thank you to all for being a part.

In the calm weekend that has followed Friday night, I’ve enjoyed asking the kids what their favorite part was.  Olivia gave us permission to share her journal entry for Friday (below) and we clearly see that it was a significant celebration for all of them.  I so appreciated Walter’s observation on Philippians 4 that we find joy not because of life’s circumstances but often in spite of them.  I loved Uncle Bob’s specific word to Wilson, Max and Olivia on how he has seen them respond to the circumstances facing our family.  I loved the slideshow and the worship.  Missed out on most of the food because I was having too much fun visiting, but love that Sydney and her team blessed us with the leftovers (those PB&J bars have got to be illegal).

A future blogger perhaps?

For those who couldn’t join us, we’ll work to get some pictures up and on-line shortly but in the meantime I’ll wet your whistle with the lyrics to the song we asked Marlin to sing (and in hindsight, we feel it was very unfair to ask anyone to try to sing in that room with very few dry eyes).  As Trish mentioned in the program, it’s a song we’ve played in our house repeatedly around the birth of each of our kids as it’s been our prayer for all of them.  All the more for Rudy on this week as a true smile has finally emerged:

Sunrise of your Smile–Michael Card

Reject the worldly lie that says,
That life lies always up ahead,
Let power go before control becomes a crust around your soul,
Escape the hunger to possess,
And soul-diminishing success,
This world is full of narrow lives,
I pray by grace your smile survives.

For I would wander weary miles,
Would welcome ridicule, my child,
To simply see the sunrise of your smile,
To see the light behind your eyes,
The happy thought that makes you fly,
Yes, I would wander weary miles,
To simply see the sunrise of your smile.

Now close your eyes so you can see,
Your own unfinished memories,
Now open them, for time is brief,
And you’ll be blest beyond belief,
Now glance above you at the sky,
There’s beauty there to blind the eye,
I ask all this then wait awhile,
To see the dawning of your smile.

For I would wander weary miles,
Would welcome ridicule, my child,
To simply see the sunrise of your smile,
To see the light behind your eyes,
The happy thought that makes you fly,
Yes, I would wander weary miles,
To simply see the sunrise of your smile.

 

The time of dedication ended with a prayer for Rudy from Philippians 4:4-7…we share a paraphrase of it below and ask, humbly, that you join us in praying these verses over Rudy that he may experience the richness of a life lived knowing the nearness and love of God.

Dearest Rudy,

Delight yourself in the Lord

Yes, and find your joy in Him

Be known for your gentleness and never forget the nearness of our God

And don’t worry – whatever is going to come

Just tell God every detail and the peace of God that no one understands will come to you

No, don’t worry

Just tell Him every detail and His peace will come to you.