Rudy was a happy little monkey for our 4am departure from Goleta and our 6am arrival to UCLA…Rudy’s attempt at “thumbs up” on Valium right before he left for the OR! All is on schedule so far today…thanks for your prayers!

After a string of some pretty fantastic celebrations (the Heart Walk, Rudy’s 5th Birthday, the Rescue Mission’s big annual fundraising event, La Patera Fall Carnival),  last week was filled with some pretty important fall “to dos” in Rudy’s annual calendar including his IEP (Individual Education Plan) meeting.  My first impression when I walked into the room of teachers and specialists was “Wow!  Small crowd!”.  Ha  Rudy’s last two annual IEP’s involved both the county AND district personnel and the room had easily 18+ people in attendance…now that Rudy is solely at GUSD, we had a more intimate discussion with 8 including his classroom teachers, his classroom nurse, the district nurse, speech therapist, adaptive PE teacher and psychologist.  As always, there was much to discuss as we reviewed last year’s goals and heard the proposed goals for next year.  We are encouraged by the progress Rudy has made and as much as we value all that the county program offered Rudy, it’s so nice to have him closer to home and settling into his own neighborhood school district.  And, once again, Rolf and I walked away humbled by the number of quality individuals investing in Rudy’s education so significantly.  We are so grateful!  There wasn’t any talk of adding time at La Patera Elementary as part of a “blended schedule” for Rudy but this is still on the table and details for that arrangement will be ironed out in the coming weeks…which is fine because our focus is now on getting Rudy past this week’s surgery.

 

Rudy has his stoma closure surgery tomorrow.  ULCA just called and Rudy’s procedure is scheduled for 7:30am which means we have to report to registration at 5:30am (which means we’ll be leaving SB at 4am – FUN).  It’s a minor surgery for Rudy but because Dr. Nina and her fellows/residents need to cut around the stoma, remove scar tissue and then stitch him up from the inside out, it’ll be a minimum of 2 hours in the OR and will require an overnight (possibly 2 nights) for observation.  I’m praying he tolerates it all well, of course, and is protected from infection as he heals.  It’s been so long since he’s had a surgery involving an incision that I kind of forgot about all the pre-op stuff we’ve had to do this past week (blood draws, DCing aspirin for 10 days before surgery, dr. appts, etc) and all the post-op wound care we’ll have to be on top off to keep him infection-free.  I LOVE that it’s been long enough to forget details like that but I don’t like that  it has made for a mad scramble this past week!!  Ha Ha  Thank you for your prayers!  I’ll post an update after tomorrow’s procedure.  Thank you – thank you!

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…

 

 

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!!!

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!

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.

A random candid shot…just because!

A little walk down Heart Walk Memory Lane…

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

Rudy sure enjoyed his first day in his new class at the Learning Tree…he enthusiastically participated in all the activities and was content when I showed up to pick him up.  Teachers Diane and Brenda from the Bear Club arrived to help facilitate a smooth transition so it was a real treat to see them.  Rudy has been so blessed with such wonderfully gifted and caring teachers and nurses both at the county and now in GUSD!  We are incredibly grateful and, once again, humbled by the logistical details, behind the scenes personnel and classroom staff if takes to education our son!  Excited for a special year ahead…stay tuned!

 

 

It’s official…sadly, summer is over but the big sibs were all smiles when they headed off to school this morning and, even more importantly, were all smiles when they came home this afternoon.  Rudy and I visited his classroom today and we really enjoyed meeting his new teachers and school nurse.  He will start his first day bright and early tomorrow morning and because he’s back in Goleta, he won’t have a long bus ride anymore…he’ll be just a couple of minutes away from home!  Yay!  His annual IEP meeting won’t be until late September so any decision to pursue a blended schedule that would include time at La Patera (our neighborhood school) won’t be considered until then.  We’ll have to wait and see.  🙂

 

Our last two weeks of summer were filled with a number of doctor appts and lots of “to do’s” but we managed to squeeze in a little last minute fun too…

 

Our appts with the endocrinologist, neurologist and cardiologist were all pretty routine.  Rudy’s relatively new endocrinologist announced she is leaving the area so our appt with her was our last.  I’m sad because I really like her but a new endocrinologist has already been hired to take Dr. C-V’s place and will be settled before Rudy’s next scheduled appt so he won’t skip a beat in his thyroid care.

You may recall that after Rudy’s febrile seizure episode in late June, we weaned him off Trileptal and started him on Depakene.  Well, the Depakene gave him serious diarrhea.  I thought maybe that would subside once Rudy’s body adjusted to it but we battled it for several weeks with no improvement so Rudy’s neurologist has switched him to phenobarbital.  I have to admit that the switch to phenobarbital is concerning to me and Rolf as our only reference to the drug is “One Flew Over The Cuckoo’s Nest” but the pharmacist assured us it’s a pretty commonly prescribed barbiturate.  We’re keeping a close eye on him as it, too, can have undesirable side effects including irritability, lethargy and behavioral changes but it’s really the only other option to treat febrile seizures so I’m praying his body responds well to it.  He just started it this week.

Lastly, our visit with the cardiologist showed little to no change in Rudy’s heart function…no better, no worse.  There is no plan to schedule a heart cath this fall but Dr. Harake would like us to touch base with Dr. Alejos at UCLA to discuss the heart transplant a bit more.  Our consult with the heart clinic in May was supposed to include him but he was out of town at the time.  Dr. Harake feels it would be helpful to talk with him directly as Dr. Alejos is the one with whom Dr. Harake has been communicating so we’ll seek to make that connection sometime soon.  I was able to make appointments with the UCLA dentistry department AND Rudy’s ENT on the same day (yay!) so our next trip to UCLA will be on September 23rd.

So, maybe we’ll have a quiet school year (knock on wood!)…regardless of what is to come, I’m so grateful everyone got off to a good start today…

Happy School Year Everybody!!!