We’ve had a quiet start to 2017…Wilson headed back to APU the first weekend of January and hit the ground running in his new schedule of classes.  Max and Olivia still had semester finals to prepare for when they headed back to school on the 3rd.  They were thrilled to finish finals week last Friday!!!  Olivia sailed through her first high school finals week and Max is one big step closer to graduation…the countdown is ON!  🙂

Rudy enjoyed getting back to his friends and teachers at school after the long break.  He’s back to his twice weekly physical therapy sessions but has yet to be assigned to a new OT since his last OT retired in December.  He had a routine check-up with his neurologist a couple of weeks ago.  Because Rudy has been seizure-free for almost two years (his last seizure was in Feb. 2/15), Dr. Corazza scheduled an EEG for tomorrow to determine whether or not we can begin to wean Rudy off his anti-seizure medication.  That would be exciting!!!  We’ll keep you posted…

Rudy has been battling his first bug of the season this week.  He was sent home from school early last Thursday and has been home sick ever since.  Thankfully, his fever broke on Monday and his energy is returning.  We’re hoping he’ll sleep through the night tonight (after several sleepless nights) so he can return to school tomorrow.  🙂

Rudy has actually had a long, healthy run the past several months so we pray this bug will run it’s course quickly and be the end of Rudy’s cold and flu season!  😉  ‘Hoping your new year is starting off healthy and happy!

 

It’s officially the Christmas season and we’re enjoying all the traditional activities that accompany this time of year.  The kids have one more week of school before their winter break and we’re counting down the days!  😉  I skipped town the week after Thanksgiving to spend a couple of days with my mom in Kansas for her 85th birthday!  It was short but sweet and we made the most of our 2 1/2 day visit…

I got home from Kansas just in time for a string of Silver By Trish trunk shows and we squeezed in decorating the house as well!

Rolf, Rudy and I headed down to UCLA early Thursday morning for a visit to the heart clinic and a meeting with Rudy’s surgeon.  Rudy had an extensive echo exam and Dr. Alejos confirmed that there isn’t much change in Rudy’s heart status since his last echo.  Rudy’s tricuspid valve leakage and hematocrit level are high but his heart muscle is strong!

We had some free time between appointments so we visited the PICU on the 5th floor and enjoyed seeing some familiar faces…Roger and Dr. Kelly.  Rudy insisted on walking and he made his way around the 5th floor corridors as if he owned the place…the sight of him walking around those halls that are filled with so many memories never ceases to take our breath away and it’s always great fun to see how those who cared for him in those first several months of his life react to seeing him now. 😉

As we have described before, discussions about what to do next have come to a bit of an impasse since Rudy’s heart cath in July. The contributing doctors in conference who are unfamiliar with Rudy’s history and are just looking at the numbers, feel the Glenn is the logical next step.  Those who know Rudy’s history disagree.  Dr. Dan (cath cardiologist) encouraged us to talk with Dr. Brian Reemtsen (surgeon) directly to help us sift through all the varying opinions.

Although we have had quick consults with Dr. Brian in the hospital hallway after past caths, it has been years since we’ve had a detailed conversation with him and Rolf & I were eager to hear his thoughts on where we stand in Rudy’s treatment plan.  Dr. Reemtsen was direct in his communication with us on Thursday…although there are cardiac indicators and pulmonary progress that would typically represent the need and green light for surgical intervention, he is not recommending surgery at this time.  The main reason being that what can be done surgically wouldn’t make enough of a difference to warrant the risks…even good surgery results wouldn’t bring a marked improvement to Rudy’s life and/or heart function.  Dr. Brian believes the greatest risk to Rudy from a surgical standpoint is his issue with chylous fluid.  Chyle is a milky bodily fluid filled with free fatty acids (FFAs) that is transported through the lymphatic system.  Rudy battled the leakage of chylous fluid in his pleural cavity (chylothroax) for 8 weeks after his heart surgery in 2008 and then again in his abdomen after his stomach surgery in 2009.  During the height of his battle, Rudy lost a third of his body’s total fluid EACH DAY.  Dr. Reemtsen told us that he has never had a patient (or heard of a patient) who had chylothorax as severe as Rudy and survived.  Based on this history, the team is very concerned about the risk of chylous fluid leakage during any future surgery.

He also said that he doesn’t know of anyone who has survived as long as Rudy with no intervention!  Rudy’s current status as a post-Norwood/pre-Glenn patient is working for him and until his heart muscle function starts to deteriorate, he feels strongly that we should leave things as they are.  As he put it, he isn’t wishing we could do something but rather hoping we don’t need to do anything. 

It was a bit surreal to have this serious and, at times, heart-wrenching conversation as Rudy walked circles around the office mischievously playing with the light switches and trying persistently to push every button on Dr. Brian’s computer.   In the middle of it all, Dr. Brian pointed to Rudy and said “if you had told me that he would one day walk into this office, I wouldn’t have believed it!”…particularly meaningful coming from Dr. Reemtsen who is not one to be overly dramatic or prone to exaggerate.

Although our conversation was frank and heavy, it was encouraging all in all.  It was helpful to hear a strong, definitive opinion and Rolf and I left feeling confident we’re in a good space with Rudy.  I think our perspective is slowly shifting from “anxiously waiting to do something” to “actively choosing not to do something“…a surprisingly helpful distinction.   So, for now, the plan is to continue Rudy’s palliative care with a huge emphasis on quality of life, share in Dr. Brian’s hope that we won’t need to do anything and embrace the miracle that he is.

Rudy was back at school on Friday and enjoyed a surprise visit from our friend (and Rudy’s fellow HLHS survivor) Jeni…

He and his classmates also enjoyed a surprise visit from Santa (who Rudy promptly called out as special ed aide Todd!!)  Ha Ha

Rudy experienced a first at last week’s monthly blood draw…it was the first time he sat all by himself like a pro:

Thank you all for your prayers…since the cath especially.  I think we’ve learned a great deal in the follow-up discussions and there is no denying that God is at work in the unconventional (a.k.a. miraculous) HLHS journey Rudy is on!  Blessings to you dear friends!!

I’m cuddled up in bed still…getting ready to hit the kitchen for some fun food prep but enjoying the chill in the air and being under the covers.  Rolf is getting ready to go out for his daily paddle and the big kids are still asleep sprawled out on the living room floor after a movie night.  It’s a quiet start to Thanksgiving 2016 and I’m thankful for today…Wilson’s home and we’re looking forward to a fun celebration with friends later this afternoon.

So before things ramp up around here.  I just want to say…Thank you friends!  Thank you for your kindnesses and encouragement.  Thank you for your prayers and support.  Thank you for expressing your love creatively and for being the hands and feet of Christ in the life of a little half heart and his appreciative family.  🙂  We are rich!

Here’s a little glimpse into this weeks riches…

Happy Thanksgiving to you and yours dear ones!  May today be a reminder of how much you are loved and appreciated!!

Halloween included a school sing and costume parade for Rudy, a day off from school for Max and Olivia, the traditional chili, rice and cornbread dinner with friends and a phone call from Wilson!  It was a full, fun day for sure.

We’re excited to host the graduates of the Santa Barbara Rescue Mission recovery program this week before Saturday’s graduation ceremony!  Max and Rolf have a college visit later in the week and Max and Liv have the homecoming dance on Saturday night as well!  WOW, Welcome November!!

 

This week has been a bit of a reality check as Rudy has had both developmental and medical evaluations.  Here’s a recap:

Rudy’s IEP was on Tuesday morning.  This is an annual meeting of Rudy’s educators to establish an individual educational plan and discuss his various academic, social and physical goals.  This year’s IEP was particularly comprehensive as it included a triennial reevaluation to determine Rudy’s eligibility for services.  The eligibility assessment team included Rudy’s special education teacher, his adaptive PE specialist, district phycologist, district nurse, the speech and language pathologist and occupational therapist.  All were in attendance today along with Rudy’s CCS OT & PT, his general ed classroom teacher, district special services representative, Rolf and myself.

There weren’t any big surprises and, in general, we couldn’t be more pleased with Rudy’s progress and attitude toward school.  He is motivated to learn (most of the time) and eager to put what he’s learning to practice (especially when it involves sporting equipment of any kind)!  😉  All in all, IEPs are a positive experience and Rolf and I always leave grateful for the community of professionals who pour so much energy and expertise into our boy. That being said, IEPs are also a bit difficult to face as they are designed to take a microscopic look at Rudy’s deficiencies and areas of need…even more so in the triennial.

The report presented on Tuesday determined Rudy’s eligibility and need for continued special education and related services based on the following criteria: Intellectual disability, Orthopedic Impairment, Multiple Disabilities, Health Impairment and Speech or Language Impairment.  One change is that as Rudy gets older and the academic divide between Rudy and his typical classmates becomes wider, the time Rudy spends in his special ed classroom becomes greater (the special ed/general ed split that was 50/50 the last couple of years is now more like 75/25).  In addition, the triennial report included approximate age equivalent determinations based on the psychologist’s assessments.  Rudy was tested in cognitive functioning categories like fluid reasoning, knowledge, quantitative reasoning, visual spatial processing and working memory (resulting in an average age equivalency of 3 years and 5 months) as well as in social/emotional functioning categories like communication, daily living skills, socialization and gross/fine motor skills (resulting in an average age equivalency of 3 years and 3 months)…it’s not something I dwell on too much but it does make me a little sad.

On Wednesday, Rudy had his routine appointment with Dr. Harake and monthly blood draw.  Thankfully there isn’t a significant change in the ventricle size or the tricuspid valve leakage since Rudy’s echo 2 months ago…still moderate to severe…and his hemoglobin level is still at 21.  Rudy’s next appt at the Heart Clinic/UCLA is December 8th and we see Dr. Harake again on December 20th.  In the meantime, Drs. Harake and Dan have recommended we schedule an appointment with Rudy’s surgeon so we are hoping to coordinate that consult with our trip down on December 8th.  We’ll see.

There has been a lot to process this week, my brain is tired.   It’s time to refocus and prepare for Halloween and all the fun of the next few days.  The holiday season is upon us and I’m ready!!  Let me be the first to wish you a Happy Hallowthanksmas!!!

 

 

Since there will be much to document this week, I thought I’d slip in a quick update on our weekend that included a homecoming halftime, good time with dear friends, a camp fundraiser AND Monster Ball!!  I just love fall…the cooler weather, the fun festivities and all the yummy comfort food!  🙂

Max had the honor of being a member of the 2016 Homecoming court.  The football game and crowning of the queen happened on Friday night.  The king is crowned at the dance which isn’t until November 5th so Max can’t hang up his royal hat just yet.

Rolf, Rudy and I headed down to LA Saturday morning for the annual Camp del Corazon Family Festival & Reunion fundraiser.  Thanks to the generosity of “Team Rudy”, we were the 2nd top fundraiser!  Woo Hoo!!!  Way to go Team Rudy!

Then, on Sunday, we went to the annual Monster Ball party with many of Rudy’s special needs buddies and the UCSB Gauchos!

The Gauchos’ head coach has a son and daughter who went to preschool with Rudy.  Shortly after we arrived, Coach brought his son over to Rudy to say “hi”…his son took one look at Rudy and said to his dad “That’s not the same Rudy!”.  Ha Ha  I LOVE IT!!!

Olivia and Wilson had big weekends too…

It was a big weekend for the whole family.

Next up?  Rudy’s triennial IEP meeting tomorrow, cardiology appointment on Wednesday, and a visit to the pumpkin patch on Thursday!  Yay Fall!!  🙂

 

 

This has been a different fall for our family.  With our AYSO days behind us, fall doesn’t have the same kind of intensity as it once did with multiple evening practices, Saturday games and “Coach Rolf” at the helm.  🙂  The big kids are more and more independent and, more and more, Rolf, Rudy and I find ourselves chillin’ at home in the evenings.  A new season is emerging indeed.  😉

I think we’ve appreciated being a little less CRAZY BUSY this fall but we sure haven’t had a deficit of fun…quick visits from friends and fun milestones have kept our family on our toes!

There was another special accomplishment in the family last week.  ‘Thought I’d give you a “behind the scenes” look at our family’s response to said accomplishment…

 

 

I appreciate Max keeping it real, Wilson’s PSA and just LOVE that Olivia managed to incorporate the word “magical” into her response!!!  We celebrate bowel movements…especially those that occur in the potty.

The celebrations continued (I’m sure Maya will love this segue) with a quick visit from Maya sandwiched between engagements on her calendar:

 

Ha Ha!  Fun stuff!

So, we have a big week ahead:

Rolf, Rudy and I are heading down to North Hollywood on Saturday for the annual Camp del Corazon Family Festival and Fundraiser.  We’ve been raising $ this month for this amazing organization in honor of Rudy’s birthday…if you’d like to learn more about CdC or make a donation, click here!

Rudy’s annual IEP is next Tuesday…this will be a particularly thorough IEP as it is his triennial so we expect to examine all aspects of his educational plan with many voices speaking into the assessment…always an interesting (and somewhat emotionally exhausting) process!

Then, on Wednesday, Rudy has his regular echocardiogram and exam with Dr. Harake.  I try hard to resist the temptation of living from one appointment to the next but, I admit, I’m eager to check in with Dr. H and get the latest echo info. We’ll keep you posted…

In the meantime, enjoy the sights, scents and yummy flavors of autumn!  May the changing of the season bring refreshment to our hearts and souls.  😉

 

 

Rudy got a jump start on celebrating today with his friends and teachers at school…a birthday so big it will likely fill two blog post updates so here’s pictorial proof of Birthday Fun – Day 1!!

It’s time to hit the hay…we all have a BIG DAY tomorrow as we continue the celebration at the 15th annual “Back to the Bayou” event supporting the Santa Barbara Rescue Mission!!  The Rescue Mission community was such a huge encouragement to us when Rudy was born, it will be fun to share tomorrow together!  🙂  Happy Birthday Eve Rudy!!!  It’ll be your official birthday in just 26 minutes!!!!!

School has been in session for a couple of weeks and all are settled back into the structured school/work/athletic & therapy schedules that keep this family on the go.  I hear good reports each day from Rudy’s new teacher and aide and we are looking forward to hearing more about his class at “Back To School” night this week.  After taking the month of August off at the Medical Therapy Unit, Rudy is back on the schedule with two PT and two OT sessions per week…this is in addition to the Adaptive PE, OT and speech therapy he gets at school so he definitely has a full slate of services that keep him working hard Monday through Friday.

We haven’t had any more discussions with the team at UCLA since our consult with Dr. Harake a couple of weeks ago.  Rolf hopes to make contact with Dr. Dan sometime this week to follow up on the post-cath conference.  I don’t expect there will be any major revelations as a result but the ongoing discussions and our inquiries keep Rudy on everybody’s radar and fan our hope that maybe, just maybe, something more favorable than what we have now will come out of it.    We’ll keep you posted…

One facet of our family’s life may be stuck in perpetual limbo, but the many others are charging forward as life tends to do so we’ve embraced all the transitions of the past couple of weeks and the fun milestones reached.  Life goes on and, despite what is (and isn’t) going on in Rudy’s body,  he is most definitely front and center in it all…a gift not lost on us.

It’s hard to believe but Rudy’s birthday is just 2 1/2 weeks away!  He gets to celebrate with 300+ friends as it falls this year on the same day as the SBRM’s big annual Bayou Event!!  There is much to look forward to and lots of hard work ahead these next couple of weeks as we prepare.  Woo Hoo!