Archive for September, 2013

“Little” Miracles

September 24, 2013

Saturday was such a fun, full day…the Heart Walk and then swimming back at our house with out-of-town friends, then Livy’s soccer game and dinner out…by the time we got home even the big kids were moving slow and admitting they were tired.  Ha Ha To put the significance of the day into a little perspective, I pointed to Rudy who was smiling and still had some energy and said “Imagine doing all we did today with half-a-heart!”…nothing short of a miracle.  Rudy’s journey may not be defined by the “BIG” touch-of-God miraculous healing that one often prays for when dealt a life-threatening illness but there’s no denying the thousands of “little” miracles that have gotten Rudy to where he is now.  Our friend Bob calls them “God’s fingerprints” and we have become pretty good at identifying them over the years.  You have to be careful, sometimes God’s little miracles can be so subtle you’ll miss ’em if you blink or dismiss them as a coincidence…and sometimes they can be, well…creative.  🙂  I had an encouraging talk with Dr. Adele at the Pediatric Dental Clinic at UCLA yesterday and was witness to another “little” and very creative miracle!

THE BACKSTORY – I shared I was nervous about the dental consult…”really anxious” might be a better description.  With so many other concerns to address over the years, Rudy’s dental care always took a back seat and as time passed, it became increasingly difficult to face his dental care knowing that kids like Rudy often have big challenges with their teeth.  It felt daunting and exhausting (still does)…for many heart kids a simple teeth cleaning requires taking antibiotics 10 days BEFORE the appt. and a cavity filling can require a trip to the OR.  I have tried to be diligent in brushing Rudy’s teeth but, of course, he fights me on it and every time I hold him down and jam the toothbrush into his mouth, I wonder what backward steps we’re taking in getting him to want to use a spoon and eat so there’s always a question in the back of my mind of what’s the proper balance.  Blah, blah, blah…always something to consider…consequences no matter what you do…etc, etc, etc.

DENTISTRY 101 – So, I walked into the School of Dentistry building yesterday prepared for the polite scolding I knew I was going to get from the doctor about not brushing Rudy’s teeth enough, not flossing them at all and because he still uses a pacifier at times!!!  Some of you may be wondering if the fact that Rudy is g-tube fed makes a difference in his oral health.  I wondered that too.  It may make a little difference but not necessarily for the better.  The food he gets through his g-tube still travels to his mouth through saliva and the many medications he takes that can be bad for his teeth are also getting to them through the blood so even though very little is actually passing through his mouth, plaque and tooth decay are a big problem.  In addition, the friction produced when we eat food can actually slow the build-up of plaque and because Rudy’s mouth isn’t active in that way, the plaque that is produced isn’t “rubbed” off or knocked off…which is why brushing is even more important.

THE LITTLE MIRACLE – Dr. Adele was very sweet and great with Rudy.  We talked a bit and I shared my concerns before she examined him.  Of course, Rudy wasn’t willing to cooperate and it took both of us prying his mouth open (it sounds worse than it was!) so she could get a good look at him but after a long, silent pause (and Rudy turning purple in protest) she said “Wow! He looks great.”.  “What?”, I replied,  “But you can see the plaque build up on his teeth!!”.  Dr. Adele went on to explain that, yes, Rudy has plaque build up but where it is located is actually a good thing.  If the plaque was located at the base of his teeth along the gums (which is typically where she sees it in cases like this), it would be bad and would need to be removed.  But his plaque is on the surface of the teeth and has been there long enough to harden and become “calculus” (or tartar).  Now, for you and me calculus is bad but for Rudy it is actually serving to create a protective seal on the surface of his teeth!!!!  Have you ever heard of such a thing?  For those of you more intelligent in the science of dentistry than I am, this may all sound very reasonable but I was completely blown away!!!  Dr. Adele seemed a bit surprised too…she said that based on his medical history, she pulled all the standard OR consent forms prior to our appointment assuming we’d have to schedule a procedure.  As she took the papers and put them back into Rudy’s chart, she said “Keep doing what you’re doing, mom, it’s working.”  In case you missed it…that’s a big, fat fingerprint of God…a not-so-little little miracle!!!

Thank you, thank you for your prayers…the visit to the dental clinic was followed up with a visit to Dr. Nina (ENT) and she agrees it’s time to close the stoma.  I left her office and went straight to her schedulers office and reserved a slot in the OR on October 15th!!  Closing the stoma involves an overnight in the ICU for observation because Dr. Nina’s team will need to do a bronchoscopy to make sure the airway is all clear, cut around the stoma, remove all the existing scar tissue underneath and then stitch him up.  Of course, we’d love to spare him all that but in the long run it will be SO GREAT to have the stoma closed…great for therapy, great for school, great for swimming and Olivia is thrilled he’ll be able to get baptized when he wants to!!!  🙂  So sweet!!  I also got to check in quickly with Dr. Rick and Dr. Dan which is always an encouragement so everything I had hoped would come out of our trip to UCLA happened!  Yay!!!

On a bit of a side note, both Dr. Rick and Dr. Dan asked me how the Heart Walk went (so kind) .  After a quick recap of all the fun, Dr. Dan asked me who put on the Heart Walk.  I told him the American Heart Association and he said “Oh yeah? I’ve gotten some grants from AHA.”!  Knowing one of Rudy’s key cardiologists has received AHA research grants in the past makes Team Rudy’s fundraising success even more sweet!! 🙂

Rudy tolerated our long day well.  He asked to go to bed last night and took a nap already this morning so he is definitely tired but he’s smiley and happy.  I’m actually taking him in to see Dr. Abbott today because we’re going on Day 6 of a solely Pedialyte diet…he hasn’t been able to digest his feeds properly and seems to be battling a bug of some kind (although the other typical symptoms aren’t present) so hopefully Dr. Abbott can help us figure out what’s going on.  Even though Rudy appears to be content, he surely needs more calories than he’s getting.  Stay tuned…

A happy day at UCLA!

A happy day at UCLA!

Newly elected student council member Olivia...it's good to know we have a Safety Officer in the house!

Newly elected student council member Olivia…it’s good to know we have a Safety Officer in the house!

Wilson and Rudy watching Maxo's hockey game last Friday...Heart Walk Eve

Wilson and Rudy watching Maxo’s hockey game last Friday…Heart Walk Eve

Uh oh!  All is took was one second on Rick's bike and Rudy was hooked!  Honorary Black Sheep perhaps?

Uh oh! All is took was one second on Rick’s bike and Rudy was hooked! Honorary Black Sheep perhaps?

 

 

Heart Walk 2013

September 22, 2013

We were blessed with another AMAZING Heart Walk day with incredible weather, a great turnout of friends and a truckload of memories our family will cherish!  It’s so hard to pinpoint a highlight…I’m always amazed at how the big kids embrace the day and it was fun to see Rudy enjoy himself but this year we received quite a bit of feedback from friends about how special the day was for them too and that means so much!  “Team Rudy” broke records with a final fundraising tally of $12,340.00 – OUTSTANDING!!!  So, whether you came or gave or BOTH…Thank you!  Thank you for sharing in this special tradition and amazing achievement!  TEAM RUDY ROCKS!!!

Rudy and Stella during set up :)

Rudy and gal pal Stella during set up 🙂

Members of Livy's Girl Scout Troop volunteered to pass out water on the wak route!  They did a great job!

Members of Livy’s Girl Scout Troop volunteered to pass out water on the walk route! They did a great job!

Jeni joined us again this year and brought her mom and niece!

HLHS survivor Jeni joined us again this year and brought her mom and niece!

Rudy, Christa and Jeni - HLHS Thrivers!!

Rudy, Krysta and Jeni – HLHS Thrivers!!

Lisa and Daniel get the award for traveling the most miles...all the way from North Carolina!

Lisa and Daniel get the award for traveling the most miles…all the way from North Carolina!

Rudy's cardiologist and his wife are big supporters of the Heart Walk!  Yay Dr. and Dana Harake!!

Rudy’s cardiologist and his wife are big supporters of the Heart Walk! Yay Dr. and Dana Harake!!

Rudy's school nurse came and showed her support with a homemade Rudy tshirt!!

Rudy’s school nurse Sarah (& her daughter) came and showed her support with a homemade Rudy tshirt!!

Max reenacting his reaction to the announcement that Team Rudy raised $11,715.00!!!  Ha

Max reenacting his reaction to the announcement that Team Rudy raised $12,340.00!!! Ha

The rocking DPHS drum line!!

The rocking DPHS drum line!!

High fives for all the Westmont Warriors at the start of the walk!

High fives for all the Westmont Warriors at the start of the walk!

IMG_6360-3K-print

Some "Rayme love" from Logan's mommy!

Some “Rayme love” from Logan’s mommy!

A triumphant moment for Rudy!

A triumphant moment for Rudy!

IMG_6502-3K-print

IMG_6532-3K-print

Rudy with heart buddy John Dixon!

Rudy with heart buddy John Dixon!

Go drum line, go drum line!

Go drum line, go drum line!

Rayme (Logan's mom) and I were presented with an American Heart Association Appreciation Award for our fundraising efforts as "Moms With Heart" teams!  A special honor to share with Rayme.

Rayme (Logan’s mom) and I were presented with an American Heart Association Appreciation Award for our fundraising efforts as “Moms With Heart” teams! A special honor to share with Rayme.

Well done Rudy!

Well done Rudy!

All the final preparations for the Heart Walk were a fun distraction this past week but it’s back to “business as usual” tomorrow (Monday) as Rudy and I have an early morning departure for 2 appointments at UCLA…our first with the dental clinic and a follow up with Dr. Nina (ENT).  I’m a little nervous about these appointments so I’m praying for an encouraging consult with the dentists and a plan with Dr. Nina to close Rudy’s tracheostomy stoma soon.  Thank you, thank you!  Bless you dear ones!

Heart Walk Countdown!

September 18, 2013

After preparing all summer, we’re down to the final three days before the SB Heart Walk!  The Heart Walk benefits the American Heart Association and this will be our family’s fourth walk.  What started out as a fun, creative way to celebrate Rudy’s birthday with some friends has turned into a pretty amazing effort year after year with close to 100 “Team Rudy” donors and 40+ walkers who participate in celebration of Rudy!!!  A large group of friends will be involved again this year as Wilson and the DPHS drum line will be pumping up walkers along the walk route and members of Livy’s Girl Scout troop will be manning the water station at the 1/2 way mark.  So fun!!!  The Westmont baseball team is walking again this year and will stop by the Team Rudy tent to cheer on their fellow warrior…go Rudy…go Warriors!  🙂

If you’re in the area, please join us!  We’ll set up the “Team Rudy” tent on Cabrillo right across the street from the Fess Parker Resort rotunda.  The Heart Walk festivities begin in the rotunda at 8:30am, we’ll meet at our tent at 9:15am and walk over to the opening ceremony together, the walk should end about 11:15am and, for those who can stay, we’ll meet up at the tent again for birthday cupcakes!  🙂

Our family’s personal fundraising goal is $10,000.00 and we are very close…we’re just $1400 away from our goal.  If you were planning to make a donation but haven’t yet, now’s the time!  🙂  Follow the link below to the Heart Walk homepage, you’ll see our family’s name on the right under “Top Fundraisers”…just click on our name and it’ll take you to our personal page.

Link to the Heart Walk Website

Thank you friends!  The funds we’ve raised the past 4 years have all gone to fund pediatric research and programs!  Together we truly are making a difference in the lives of children with congenital heart defects.  I’ve always hoped that our efforts would make a difference for Rudy too but it can’t go overlooked that YOU already have made a significant impact on Rudy’s life through your prayers and friendship.  His life is so rich.  Thank you for helping us pay it forward!  🙂  Bless you friends.

Rudy and the Westmont Warriors!

Rudy and the Westmont Warriors!  (September 2013)

A random candid shot…just because!

Wilson lending a helping hand...um, actually a helping TWO hands and legs and etc, etc, etc.  Whatever it takes!

Wilson lending a helping hand…um, actually a helping TWO hands and legs and etc, etc, etc. Whatever it takes!

A little walk down Heart Walk Memory Lane…

Heart Walk 2010

Heart Walk 2010 (age 2)

2010

2010

Heart Walk 2011

Heart Walk 2011 (age 3)

2011

2011

Heart Walk 2012

Heart Walk 2012 (age 4)

2012

2012

Stay tuned for a fun recap of this year’s Walk!!!

Happy Day Day!

September 9, 2013

You may recall Rudy really mastering the words to “Happy Birthday” last spring with our family’s string of four birthdays between February and May.  After all the birthdays were over, Rudy made the song appropriate for everyday singing by changing the words to “Happy Day Day to you.  Happy Day Day to you.  Happy Day Day to you-ooo!  Happy Day Day to you.”.  He’s been so diligent in wishing everyone a “Happy Day Day” in recent months, he had a hard time finding the right words to wish Olivia a “Happy Birthday” this morning!  🙂  He still couldn’t quite get it right by this evening but Olivia (aka IYA) felt well celebrated by his effort nonetheless…

It’s hard to believe our “little” girl is eleven.  We’ve had alot of fun celebrating her the past few days with a family dinner at a favorite local eatery on Friday night, a luau party with friends on Sunday and cupcakes with her class at school today!  My, oh, my!!    I remember being so thrilled the night she was born and we found out we had a girl…the perfect compliment to our two beautiful boys!!!  Rudy’s right…it was a happy day indeed! 🙂

A burger on the beach was Livy's choice for her family bday dinner!  Yum!

A burger on the beach was Livy’s choice for her family bday dinner! Yum!

Olivia really enjoyed celebrating with some of her friends Hawaiian-style.

Olivia really enjoyed celebrating hawaiian-style with some of her friends on Sunday…

But wasn't too thrilled when  famed hula experts "Kiko and Bernice" crashed the party to lead the girls in a little hula dancing!!

..But wasn’t too thrilled when famed hula experts “Kiko and Bernice” crashed the party to lead the girls in a little hula dancing!!  Ha Ha  Check out the expression on her face!!

We promised the boys (aka Kiko and Bernice) that we wouldn't post this pic on FB but Rudy's Beat is definitely fair game!!!

We promised the boys (aka Kiko and Bernice) that we wouldn’t post this pic on FB but Rudy’s Beat is definitely fair game!!!

Rudy was such a good boy at school last week, he got to pick a prize from the prize box!!

Rudy was such a good boy at school last week, he got to pick a prize from the prize box!!

Rudy was NOT a good boy at home today...he discovered fireplace soot!

Rudy was NOT a good boy at home today…he discovered the fun one can have with fireplace soot!

It's kinda hard to stay mad at this face! :)

It’s kinda hard to stay mad at this face! 🙂

Happy Day Day Everybody!!!!

Happy Day Day Everybody!!!!