Archive for October, 2009

Happy Halloween 2009

October 31, 2009

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Our very own "Bob's Big Boy"

 

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He thinks this is very funny!

 

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Wilson a.k.a. Keith Moon of The Who, Brandon the caped 7th grader, Max the Fearless Racer and Olivia the Princess Fairy

 

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Mom the Spider Queen and Dad as himself, um, a Nerd.

 

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Ready to go!

 

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Counting the stash...

 

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Still smiling...

 Happy Halloween Everyone!!! 

 

 

Relishing the difference of this year

October 30, 2009

Trish just e-mailed these pictures from the La Patera “Hat and Mask” Parade and it brought back memories of all that was going on last year.  We weren’t around to see this:

Didn't think you could use "cute" and "skeleton" in the same sentence, did you?

Miss Grant did a brilliant job incorporating curriculum in the affair.  What’s Halloween without kids dressing up as “The Water Cycle”?

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Max--because you can't have H20 without an enthusiastic "O"

All observed by one cheerful spectator and another perhaps more ambivalent.

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It seems that part of the preparations for Halloween involves discussion of what one did and wore last year, which makes me quickly aware of contrasts.  Last year, we were just coming to grips with the fact that our quick little open heart surgery with the four weeks of recovery was turning into a more indefinite stay.  I remember Trish scrambling a bit from a distance to help Oma and Opa get the kids costume stuff together.  I remember the drastic shift one felt in leaving the quiet struggle of the ICU and finding oneself in the revelry of Westwood.  I remember thinking how this unexpected holiday in the hospital was a planning glitch (instead of the first of several we spent there). 

It made me wander back to an old post from last year and filled me with gratitude over the ground we’ve covered.   I’ve seen so many more moving examples of parents who summon the toughness I was seeing for the first time when I wrote that.  Rest assured, having missed last year, I’ll relish the fun that the simple ritual of dressing up and walking around the neighborhood brings for the kids, but many of our friends around the country whose celebrations will bear unique touches due to unexpected circumstances won’t be far from my heart.  I pray that there would be unexpected beauty and encouragement for these special kids and their families.  Owen, I’m so glad you should be home in time to trick or treat.  Josiah, Moriah, and Stellan–grace and peace (and maybe some contraband candy) to you and your parents.  Come home soon!

 

Multi-tasking Mishap

October 29, 2009
Exhibit A

Exhibit A

scorched trach2

Sanitized to an extreme!

For all you new trach moms out there, I recommend you not multi-task when boiling your child’s trach for the purpose of sanitizing it.  🙂  We change Rudy’s trach and replace it with a fresh, clean one each week.  I clean and boil the dirty trach and then once it’s dry, I pack it away for the next trach change.  Well, this past weekend I put Rudy’s trach on the stove while I prepared for dinner guests and tended to Rudy’s dirty diaper.  Max came in a bit later and said with a turned up nose “What’s that smell?”.  Somewhat irritated that Max was turning up his nose at the dinner I was preparing, I quickly responded “that’s mommy’s yummy potatoes, Maaaax!”.  Again with the turned up nose he looked at me quizically and walked away when I turned and noticed the smoke coming from the stove top!  Yikes!!!  No wonder Max had a turned up nose…it smelled awful!  Rudy’s trach looked like a over-toasted marshmallow and my pan was ruined…  More annoying than losing one of my most-used cooking pans is the fact that I have to track down another Shiley 4.0 Neo trach from our medical supply company (Apria…affectionately known in our household as “crApria”) which will inevitably involve more than one prescription faxed from our doctor’s office and several follow-up calls for which I have very little patience.  Oh well, we had fun with our dinner guests nonetheless and my potatoes turned out pretty good too.
We just haven’t had the heart to post at all since Logan’s funeral last week…in part because we’re tired, a little depressed and because the momentum we felt in Rudy’s treatment plan a couple of weeks ago feels like it has stalled a bit.  Some days it is really easy to wait for the Glenn especially because we are home and enjoying our fall together under one roof but then other days (like today) the wait is truly nerve-wracking!  (sigh)
We were relieved to get a call from the pediatrician’s office yesterday informing us that the H1N1 vaccination was in after a long delay.  I was instructed to come in with Rudy right away and to check in without mentioning why we were there.  Like everywhere else, our county received a very limited amount of vaccination doses…clearly not enough to go around…so going to get Rudy’s vaccination felt a bit like an undercover covert operation but we are grateful he made the cut.  Originally, Rudy’s doctor wanted all of us to get it as an added barrier of protection for Rudy but that isn’t possible at this point and after a call to the bigger kids’ doctor yesterday, it seems they’ve run out of the regular flu shot too so we trust the big kids will be their typical healthy selves this season and stay clear of any major bugs on their own!! 
While I had Rudy in the doctor’s office yesterday, I put him on the scale and he weighed in at 19 lbs 8 oz!  Rudy has outgrown formula and we started him on Pediasure two weeks ago which is high in calories.  The increase in calories seems to be helping him gain weight.  It’s still a delicate balance as an increase in volume can be problematic for his heart but because Rudy seems to be tolerating the higher caloric content of Pediasure, we can get him more calories in the same amount of volume.  The switch to Pediasure distracted us from making any headway with baby food…Rudy’s pretty uninterested in taking food from a spoon but we’ll start back up with our attempts now that he has transitioned to the yummy, vanilla pediasure shakes.  So, we move ever-so-slowly forward (but forward nonetheless) in the world of food and weight gain.
Lastly, Rudy had his annual assessment from Early Start Services this week that is overseeing his developmental progress.  Their assessment is broken down into 6 categories:  Fine Motor and Perceptual Skills, Cognitive, Language, Social/Emotional, Self-Care/Feeding and Gross Motor.  Overall,  Rudy is beginning to register in 5 out of the 6 categories at the 6-8 month age level and in 2 of the 6 categories at the 9-11 month age level.  As much as we would love to see him sitting on his own and becoming mobile, we are grateful for his progress and know these skills will emerge in time.  If they had a category for “smiles”, Rudy’s would register far beyond his years.
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Godspeed, Little Man

October 23, 2009

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Logan Balloon

 

Don’t weep at my grave,

For I am not there,

I’ve a date with a dragonfly

To dance in the air.

I’ll be singing in the sunshine,

Wild and free,

Playing tag with the wind,

While I’m waiting for thee.

I’m a bit short on adjectives to describe the week that’s coming to an end.  We said goodbye to Logan yesterday and our hearts are with Brett and Rayme and their family.  It was a beautiful day–clear with shining sun; people gathered together in a show of incredible love; images and stories of a wonderful little boy.  And it was the most horrible of days.

I marvel at the love Brett and Rayme have for Logan.  The courage that they displayed throughout his life was still evident yesterday as they walked resolutely through the ardous steps of laying him to rest and commemorating his life. 

So many words one wants to say, but none will bring the comfort one yearns to communicate.  So much gratitude for what we have, but such fear at how quickly it might be gone.  Who knew beauty and terror could be so closely linked?

I’m better at feeling yesterday than I am writing about it.  I suspect these pictures communicate it best.

Holding Our Breath

October 19, 2009

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We continue to mourn the loss of CTICU friend Logan and anticipate a beautiful celebration of his life this Thursday.  Rayme and Brett have shown such courage and vulnerability during this tremendously difficult time.  I know they appreciate our ongoing prayers.

It has been hard to know how to celebrate Rudy’s progress this week…we were pleased to find out at Friday’s well-child visit that Rudy finally registers on the growth chart.  At 18 lbs 8 oz and 28 inches long he ranks in the 3rd percentile for weight and the 5th percentile for height.  Dr. Abbott (pediatrician) is happy with Rudy’s general condition and feels  he doesn’t need to see Rudy again for 3 months…unless he gets sick.  Rudy is on the priority list for the H1N1 vaccination but the shipment is late in arriving to our Dr’s office so we wait…and are going through gallons of hand sanitizer in the meantime. 

I admit that the confidence we’ve felt in Rudy’s progress the past few weeks has been challenged in the wake of Logan’s sudden death.  The big exhale I felt after the pulmonologist’s report has shifted to holding my breath again.  The Elliott’s loss is a brutal reminder that we can’t protect these little ones from everything…for Logan, a virus turned deadly…as hard as we try to control Rudy’s environment for his protection, ultimately he is in God’s hands…just as he was in the hospital. 

I’m not even going to try to figure this one out…just please pray that God will shower Brett, Rayme and their family with comfort and direction as they wade (or maybe it feels more like “drudge”) through their grief.  No matter how you slice it, it’s heavy!  Thank you dear friends…

I got to hold Logan last year in the CTICU before I got to hold Rudy...

I got to hold Logan last year in the CTICU before I got to hold Rudy...

This Is A Tough One…

October 14, 2009
Our friend Logan

Our friend Logan

Just minutes after posting our gallery of goofy portraits earlier today, Rolf and I got the devastating news that Rudy’s CTICU buddy, Logan, passed away suddenly this morning (Wednesday, October 14th).  For our longtime Rudy’s Beat readers, you may remember that Logan arrived in the CTICU just a few days after Rudy…flown in from Santa Barbara at 2months of age when his serious heart condition was detected at a routine well-child visit.  Because of the SB connection, we bonded with Logan and his parents, Rayme and Brett, quickly.  Although Rudy and Logan did not have the same condition, they did have many of the same complications after their surgeries and for awhile it seemed we were walking parallel paths.  Logan’s struggle was fierce and intense but he survived and began to show major improvement which encouraged us as we waited for Rudy’s “turning point”.  For eight weeks, we shared life and created community with the Elliotts in the CTICU and rejoiced with them when Logan was discharged at the end of November ’08.  I watched Rayme make that tough transition to home after a long hospital stay and when our turn finally came to bring Rudy home, Rayme’s texts and blog comments were of great comfort and encouragement because I knew she had just been through it herself.  I ran into Brett and Logan at our cardiologist’s office shortly after we brought Rudy home from UCLA in May.  He looked so great and strong and happy.  Because he was doing so well (as the above picture would suggest), today’s news came completely out of left field.  It literally knocked the wind out of me and I immediately began to sob for Rayme and Brett and their families.  Please join us in praying for this precious family…for Brett, Rayme and big sisters Kaelee and Emma.  No one saw this coming and, as you can imagine, they need our prayers for grace, comfort, strength and faith as they face this tragic loss.  The losses along the way have been hard but this one is tough…hitting very close to home for me and Rolf.  Please blanket these dear ones in prayer.

Rudy followed Logan in one of their many extubation attempts and Logan was kind enough to pass his "extubation sign" on to Rudy when it was his turn!

Rudy followed Logan in one of their many extubation attempts and Logan was kind enough to pass his "extubation sign" on to Rudy when it was his turn!

Logan and Barbie at the Mattel Christmas Party Dec.08...

Logan and Barbie at the Mattel Christmas Party Dec.08...

1st Studio Portrait!

October 14, 2009
This week is marked by Rudy’s first trip to the Sears Portrait Studio.  Although we have a number of gorgeous pictures of Rudy thanks to Greg Lawler and his artistic eye, we really needed a cheezy portrait studio pic in celebration of his 1st birthday to complete the cheezy portrait studio collection we have in our hallway gallery of all the kids.  Rudy was a cooperative model and the photographer and I did all kinds of creative “tricks” to get the desired poses…as always, Rudy put up with Mommy’s shinanagins and this is what resulted…
We got it!!  The classic blue backgroud with goofy smile!!  Unfortunately, there was no controlling the hair...I did try!

We got it!! The classic blue backgroud with goofy smile!! Unfortunately, there was no controlling the hair...I did try!

Slap some wings on him and call Anne Geddes!

Slap some wings on him and call Anne Geddes!

Precious!

Precious!

Precious, precious!

Precious, precious!

Okay, so they weren't ALL great shots...

Okay, so they weren't ALL great shots...

Our family favorite!

Our family favorite!

 A walk down memory lane…here is the family gallery of 12-month portraits…

Wilson

Wilson

Max

Max

Olivia

Olivia

And now, Rudy!

And now, Rudy!

Here’s to many more “cheezy portrait” seasons ahead!

Rudy At Play

October 10, 2009

We saw Dr. Harake yesterday (SB Cardiologist) and he was pleased with the Pulmonologist’s report from Tuesday.  Rudy’s echo looked sound as well so this has been a good week for our little man.  Dr. Harake still feels we have some time before the Glenn…we get the impression from the UCLA team that they would like to move forward so, at this point, we’re going to let all parties discuss the situation and come up with a plan.  As much as we would love to get the Glenn over with, we trust the professionals to come up with a plan best for Rudy.

 

In the midst of all the doctor appointments this week,  we did have time to catch Rudy on video doing what he does best…being cute…

Rudy’s therapist wants Rudy sitting up more and, thankfully, he is tolerating it more and more…it used to be that he couldn’t sit up more than a few minutes but this week he sat comfortably for 15 minutes!!!  Rudy enjoyed some “sibling therapy” while practicing sitting up earlier this week…

And then my two hams wanted to teach Rudy one of our old family favorites…

Later that day, Wilson had time to love on the big “sittin’ up” boy…

As always, one day at a time…

A Date Carved into Memory

October 6, 2009

October 6th will never be “just another day” for us.  Even if Rudy’s birthday didn’t come just before to remind us, it will still be a long time before I don’t shudder a bit upon hearing this date.  Ever since last year.  Hard to believe it’s already been a year since this and this.  It’s amazing how reading through the posts can bring us right back to the day of Rudy’s surgery with such vividness.

As it turned out, it was quite easy to feel like we were back at UCLA again…because we were.  In some conversations we had last week regarding planning for the Glenn, the team thought it wise to have a consult with a pulmonologist.  Thanks to Rudy’s friends in high places, it all came together very quickly and they were able to fit us in today.

So there we were with our recollections furthered by being in the very place it all took place.  Up very early like we were a year ago.  The streets, sidewalks and hallways so familiar we didn’t even need to look for signs and room numbers.  Same parking lot.  Same patio of uneasy people.

I recall how scared I was.  But it was quickly replaced by reminders of how far we’ve come.  It was really hard to stay down when one of the first people we came across was our hero:

HAIL, CESAR!!!

HAIL, CESAR!!!

That’s right folks…THE ONE AND ONLY CESAR!!!!!  Providentially, the first person we saw when we walked into the building was Enrique (Cesar’s Dad) as they were there for follow-ups.  As we each had our own slate of appointments we didn’t have long to visit with Cesar, Enrique and Maria, but it was such a blessing to see them.  Glad Rudy has tough guys like him to look up to!

On the medical side, we were very encouraged by our appointment with Dr. Pornchai Tirakitsoontorn.  We don’t include every doctor’s name, but when you get one with a name as cool as Pornchai Tirakitsoontorn, you’ll risk melting down your spell checker and throw it around a bit.  Dr. Rick insisted that Rudy get the best and, while I feel sorry for you if you have to call his name when you’ve fallen into a well, if you need a pulmonologist, Pornchai Tirakitsoontorn (the Clinical Director of Pediatric Pulmonology at UCLA) is your guy.  Pornchai Tirakitsoontorn.  It sounds just like it’s spelled, dummy.  I know–y0u’re wondering how many times I’m going to type “Pornchai Tirakitsoontorn”.  It took me awhile to master it, but now that I do it kind of rolls off the keys…

OK, so I am a bit giddy over the time with Dr. T.  We’ve found that consultations with new specialists can be unsettling, but this one wasn’t.  Rudy’s lungs have been a point of concern (they couldn’t extubate him and had to resort to the trach), and pulmonary function is a big issue when it comes to the Glenn, so we were eager to have a thorough analysis.  Dr. T came in clearly knowledgeable of Rudy’s history and then spent over an hour with us going over details, conducting his own exam and then sending us for a chest Xray.  Bottom line, he feels that Rudy is doing great.  The lungs are strong and clear–much better than he thought they would be from going over Rudy’s history.  The chest Xray today looks much better than the ones from his hospitalization 5 months ago.  Dr. T said that, if he didn’t know the Glenn was coming up, his recommendation would be to move toward eliminating the trach!

This is such great news.  All along we’ve been operating under the hopeful assumption that the trach was an intermediate step to get Rudy breathing on his own and not a permanent need.  We feared coming out of that office with some tough news, but the assessment was that Rudy has gotten bigger and stronger and is breathing better.  No timelines for how it will all come about yet (the Glenn comes first); but we’re very happy.

After leaving Dr. Pornchai Tirakitsoontorn (sorry, one last time), we finally got to make the walk up to the main hospital and to our former home on the 5th floor.  We were visitors not patients.  So many spots brought back feelings of weariness and fatigue.  I don’t think we’ve seen the last of that, but today it was fun to confuse Roger as we buzzed our way into the unit.  So great to see everyone there and enjoy such a warm welcome.  Again, I’m amazed by the ability these remarkable people have to be warm and enthusiastic over our return and focused on the pitched battles going on in those little bodies in all those rooms.  I’m so glad we got to see so many of you all in the midst of the important things you do.  We didn’t get many pictures, but here’s a couple:

Sara and Roger

Sara and Roger

Anita and Dr. Robert

Anita and Dr. Robert

It’s hard to put into words what you feel when you’re with the people who saved your child’s life, but it was rich.  Thanks everyone.  It was great to see you.  Thinking back on our day, I can’t say October 6th hasn’t passed without any tears shed but this time they weren’t those of fear and uncertainty, but gratitude and awe over what’s been overcome.

Rudy’s World-Wide-Web of Birthday Fun

October 5, 2009

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As promised, here’s the pictures from all of those who celebrated Rudy’s birthday!  Your official Rudy’s Beat party favors are on the way and will fast become family heirlooms!

The Van Clan partying in Pine Valley!

The Van Clan partying in Pine Valley!

The Bettencourt, Fiorillo and Manning celebration was festive in Connecticut.

The Bettencourt, Fiorillo and Manning celebration was festive in Connecticut.

Not far away in Boston, Cousins Mya and Kyra were lovin Aunt Andi even more after the trip to Mickey D's.

Not far away in Boston, Cousins Maya and Kyra were lovin Aunt Andi even more after the trip to Mickey D's.

 
Uncle Steve, Aunt Michelle, Emma, Jonathan and Michael sent greetings from the Kansas heartland.

Uncle Steve, Aunt Michelle, Emma, Jonathan and Michael sent greetings from the Kansas heartland. Extra points for all being in Rudy-blue!!

 
Garrett (13, HLHS) didn't have any clothes the right color, but wanted it noted that his choice of a Rudy-blue pen duly noted. (small world--Rolf and Garrett's Mom went to HS together in NJ.)

Garrett (13, HLHS) didn't have any clothes the right color, but wanted it noted that his choice of a Rudy-blue pen duly noted. (small world--Rolf and Garrett's Mom went to HS together in NJ.)

 

My fine former colleagues (Dan, Manvi, Monique, Bonnie, Lauren, Rachel, Ashita) at Fuller took a birthday break.

My fine former colleagues (Dan, Manvi, Monique, Bonnie, Lauren, Rachel, Ashita) at Fuller took a birthday break.

 
...while Anna had to mind the store.

...while Anna had to mind the store.

 

Lisa from North Carolina was so busy at this conference she didn't have time to make a Rudy sign but she did wear blue in his honor!

Lisa from North Carolina was so busy at this conference she didn't have time to make a Rudy sign but she did wear blue in his honor!

But lest you think the party was limited by international boundaries–
Al and Stacy enjoyed going All-American in Ostrava (Czech Republic)

Al and Stacy enjoyed going All-American in Ostrava (Czech Republic)

The Zovaks sent greetings from down under (but since there's no mention of Rudy, we wonder if this is just a generic picture they send to everyone back home...)

The Zovaks sent greetings from down under (but since there's no specific mention of Rudy, we wonder if this is just a generic picture they send to everyone back home on their birthday...)

 Thanks everyone!  It was fun to see all of your celebrations and be overwhelmed by the number of cards and birthday greetings.  One last time—Happy Birthday, Rudy!