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!!!

 

 

 

 

 

 

 

 

 

 

I had the strangest experience yesterday on the drive down to UCLA for Rudy’s appt with pulmonology.  As I made the turn off Sunset Blvd onto Veteran, I noticed the house on the corner was completely vacated and workers were busily painting and doing some home improvements.  Now, I don’t know if the house sold or if the current occupants simply moved out for a home renovation project but as I passed the empty house, my heart was heavy and I was totally caught off guard with a bit of grief.  Isn’t that strange?  I have become well acquainted with that drive to UCLA…getting off the crazy 405 fwy into Brentwood and onto the Westwood campus.  During Rudy’s initial 7 month hospital stay, that neighborhood became a bit of an escape for me…driving in I’d get excited knowing I was close to getting back to Rudy and driving out I’d stare at the beautiful homes with manicured yards while stopped at the stoplights just wanting to soak in all the normalcy the neighborhood represented.  The vacant house I saw yesterday was one I enjoyed in particular…it was always lit up and felt warm & inviting.  As the seasons passed, I enjoyed all their decorations during the holidays and loved their garden blooms in the spring.  I never met the people who lived there but I sure was sad yesterday thinking that they may have moved away!  Again, isn’t that strange?  Sometimes I think I must be going crazy…but, then again, I suppose it’s a wonderful reminder that there are so many choices we make in life (both in what we do and how we behave) that comfort and refresh the world around us…without us even knowing it!

 

There’s nothing new to report after our check-in with Dr. Woo.  Rudy’s lungs sound good and she would like us to continue with his current care for pulmonary hypertension at home.  She’s on board for the heart transplant and seems to be in good communication with cardiology.  The heart transplant folks and Dr. Woo have made it clear that for transplant purposes, Rudy’s oral health needs to become a priority.  I’ve actually looked into this in the past and it has been tricky to find a local dentist willing to treat Rudy with his complicated needs.  I have a referral to take Rudy back to UCLA for a dentist appt.  I suppose it’ll be helpful in the long run to have his oral health assessed “in house”  as it relates to a heart transplant but I’m still hoping to find a dentist closer to home for his general dentistry needs.  I’ve procrastinated a bit on this and now it’s time to get serious…I’ve procrastinated on getting me and the big kids to the dentist this year too so it seems to be a consistent issue for me.  😉  Next up will be visits with the Endocrinologist, Cardiologist and Neurologist…and calls today to set up Rudy’s ENT and Dentist appts (both at UCLA so I’m praying I can stack them on the same day).  SO grateful for Rudy’s team of medical professionals!  Thank you for your continued prayers for healing and good general health as we prepare for cold and flu season.

 

 

 

 

 

I don’t know if it’s because I’m getting older or if it’s because of Rudy but I’m convinced that life really should be ALL about “quality time”.  It doesn’t have to be extravagant or exciting or even out of the ordinary but about the people you’re with and making the most of today…whether today is filled with work or play.  Rudy is certainly helping us hone in on this and more times than not simple becomes the most memorable!  Our summer has been full of simple, quality time and as always, I’m sad to see summer end.  Rolf and the big kids got to spend some time with extended family in Boston…our days at home have been filled with lots of swimming, lemonade & avocado stands, visits from old friends and LOTS of movie nights…the summer took a bit of a detour with Rolf’s torn tendon and surgery but we’ve tried to make the most of that too – extra time with Dad!  So the challenge will be to keep the focus on “quality” as Wilson heads back to school on Monday for marching band camp, Rudy begins a string of doctor appts starting with a trip to UCLA on Monday as well and as we squeeze in a trip to Ventura to shop for school…the hustle and bustle of the fall schedule is starting to emerge!

We were blessed to get away last week for some final summer fun which was a highlight for me!  We enjoyed a drive down to San Diego that included time with Rudy’s godparents, a reunion with dear old friends from our season in San Diego and a trip to Legoland as part of Rudy’s Wish Trip!!!  All quality time indeed!!!  We cut our trip short by a couple of days because Rolf reached his comfort limit but we packed in enough fun to fill a whole week for sure!  Can’t resist posting pics…

 

 

As if that wasn’t enough excitement for one trip…Livy and I topped it all off with a stop in L.A. at the Staples Center on our way home to see One Direction (thanks to Rudy’s nurse Eileen!!!!! – THANKS Eileen)

Our life is rich because of the love of family and friends that surrounds us.  Thank you for adding to the quality of life we’re experiencing with Rudy through your continued prayers!  Ever grateful….

Well, Rolf’s doctor didn’t lie…his recovery from knee surgery on the 17th has been painful and is sloooooow going!  The next several months will require large doses of patience as Rolf adjusts to being “differently abled” and we all adjust to dad being “out of commission”. Thankfully Wilson got his official drivers license last week and is now at our beck and call for important errands like getting Mom a diet coke from McDonalds or driving to dad’s office to retrieve important files, etc, etc.  😉

Ironically, as Rolf is forced to lay dormant for several weeks, Rudy is motivated more than ever to walk with the help of his walker and is quick to make his escape out of the cul-de-sac each time we saddle up for a  walk in the neighborhood.  It’s so inspiring to see his “can do” attitude in action and it’s getting me super excited for this year’s Heart Walk!  Last year Rudy was able to take a handful of steps at the start of the event.  With the support of his walker, he’ll have no problem walking a couple of blocks on his own this year and what a special victory that will be!!!

As has become our tradition, our family is looking forward to celebrating Rudy’s FIFTH birthday at the Heart Walk.  “Team Rudy” has raised close to $30,000 for the American Heart Association in the three years we have participated in the SB Heart Walk and we hope to add to our tally again this year…money that will go to pediatric research specifically.  Will you consider partnering with us?  Click on the following link to read more about our motivation and to submit your donation on line…

SB HEART WALK – The Geyling Family

We also invite you to join us for the event if you are close by…here are the event details:

Santa Barbara 5K Heart Walk

When:  Saturday September 21, 2013 from 9-11:30am

Where:  Fess Parker’s Double Tree Resort…the “Team Rudy” tent will be set up across the street from the rotunda/(the start of the walk) on the beach side of Cabrillo Blvd.

For more information about the event, you can visit sbheartwalk.kintera.org.

Thank you, dear friends, for faithfully “walking” alongside us in the journey always!

 

 

 

 

 

 

Rolf and I sat behind the kids in church this morning and at one point I was overwhelmed by this fabulously normal image…the kids sitting together, messing around at times and having to be told to be quiet and focus (Rudy especially!).  I admit I had a hard time focusing on the pulpit myself as I soaked in this moment.  Rudy is becoming such a big boy…

I shared with you on June 1st that Rudy graduated from the Bear Club (his preschool class) on May 31st but he still had 4 weeks of summer school with teacher Dianne and friends to look forward to.  Sadly, Friday was Rudy’s last day of summer school so we had to say our final goodbyes.  When we think about where Rudy was at when he started school in October of 2011, it’s nothing short of a miracle to see how far he has come.  Rudy’s teacher communicated with us earlier this spring that she felt Rudy had exhausted all they could offer him at the Bear Club and so we began a dialogue with the Goleta Unified School District about bringing him back to our district in the fall.  You may recall that Rudy was sent to the Bear Club (a SB County special ed program) initially because our district wasn’t certified for non-ambulatory students at the preschool level.  GUSD can, however, accommodate a child with Rudy’s needs at the primary level and so a switch to Goleta is the natural next step.  The special ed classrooms scattered throughout our district will be seeing some changes next fall and so Rudy’s permanent placement won’t be determined this coming year…he’ll have a transitional year to give the new special ed classrooms and site changes a chance to establish themselves.  Since Rudy will likely need two years of Kindergarten anyway, I’m okay with it and I’m hoping this transitional year will allow for a special request.

For many reasons, I’ve asked the district to allow Rudy the opportunity to go to our neighborhood school, La Patera, for his first year of Kindergarten.  Olivia will be in 6th grade at La Patera this year and so she and Rudy have this one opportunity to overlap and have a shared school experience.  Although La Patera doesn’t have a special ed program per se, it is a very familiar place for Rudy and he is well known there.  I don’t expect La Patera would be a permanent placement for Rudy but I do think a year at La Patera would be GREAT for Rudy, for the typical kids that would be in his classroom and for his big sister who would be “over the moon” and so very proud to go to school with her little brother.  As it stands now, the district has suggested (but not made any promises) a blended schedule where Rudy would be placed in a special ed classroom located at the district office campus and then possibly spend a couple of days each week at La Patera.  I appreciate the district’s willingness to compromise but nothing is set in stone yet and decisions won’t be finalized until his annual IEP meeting in late September.  Will you join me in praying that the details would work out for Rudy’s placement at La Patera?  When you look at the big picture, no matter how you slice it, our family will need to be committed to supplementing Rudy’s education by creating an appropriate balance of mainstream experiences and special services to help him achieve his goals.  Because the circumstances within our district this coming school year seem to put Rudy in a bit of educational limbo anyway, it just feels right to allow him and our family this opportunity to fully engage with the La Patera community of families and staff who we love so much.  What a special chapter that would be for us all!!!

Rudy’s last week of summer school was also a full week for our family which included time with old friends Dave and Zane visiting from China…

And, the SBRM graduation dinners and celebration…always a special highlight for our family!

 

A not-so-fun summer detail is Rolf’s knee injury that occurred two weeks ago…the ER doc and ortho first diagnosed Rolf’s injury as a torn ACL but it was determined this past week through a MRI that it’s not the ACL…it’s potentially a torn tendon…not a good thing.  The ortho ordered a second MRI on Friday and we’ll hopefully know for sure tomorrow.  Surgery is tentatively scheduled for THIS Wednesday.  Rolf has been a trooper but he’s in quite a bit of pain and is moving pretty slow.  We sure would appreciate your prayers…for a successful repair, a full recovery (from what we’ve been told, it’s a 9-month recovery) and for GRACE as we adjust to having another “differently abled” member of the family…:)…once again, we’re needing to adjust!

We’ll keep you posted!!  Thank you dear friends!!

Happy 4th of July everyone!!!  We hope you had a fun day filled with memory making moments.  Ours was rich as we celebrated at the annual Santa Barbara Rescue Mission 4th of July BBQ with good friends and our SBRM family.  It was a day filled with great conversations and lots of laughs.  It was particularly good to spend the day together as a family as it feels like everyone in our household has been going in different directions since Rolf and the big kids’ return from Boston.

Poor Rolfi suffered a bit of a hiccup Monday evening when he popped his knee while messing around in the pool…the ER doc thinks he tore his ACL likely requiring surgery but we’ll find out for sure tomorrow when he gets in to see the ortho.  Yikes!…We’re praying that Rolf’s recovery will be a matter of weeks and not months.

Rudy had an appt with his cardiologist last week and his heart function remains the same.  We talked a bit about our consultation with the heart transplant team but Dr. Harake would like to follow up with them himself.  His main priority in having us start the transplant process with UCLA is for them to determine where Rudy falls in eligibility in regards to his other major organs and systems.  Dr. Harake has a clear understanding of where we’re at with the heart but wants the comprehensive tests to assess the bigger bio picture.  I’m assuming our next visit to the heart clinic at UCLA will be in August but we haven’t touched base with the pre-transplant coordinator since our consult in May so that’s not confirmed yet…we’ll see.  I’m not feeling any major push to make it happen and, therefore, content to let the process simply unfold at this point.  There was an article published in our local paper a couple of weeks ago that talked about a study they are conducting at the Mayo Clinic specifically for HLHS patients who have not had the Glenn surgery yet.    It’s a treatment involving stem cells taken from the child’s umbilical cord at birth.  Although Rudy is past the normal window for a pre-Glenn candidate, the article did get me thinking about the uniqueness of Rudy’s situation and whether or not donated stem cells could stimulate the same kind of growth and strength in the heart that they are seeing in some of their study participants.  Dr. Harake agreed to look at the article and I’m hoping it’ll be worth it to connect with the Dr. heading up the Mayo Clinic study…it’s intriguing to me.

So, for now, we’ll concentrate on having some more summer fun and gear up for another round of doctor appts in August.  There isn’t any plan to schedule a heart catheterization at this point and that’s fine with us.  It just feels like until Rudy’s status changes, we would be wise to simply keep doing what we’ve been doing and not push too hard in any direction.  We’ve been in “limbo” for so long now that it feels less like “waiting until we can DO something” and more like simply allowing Rudy the space to be who God intended him to be.  🙂  Praying for discernment and peace…always!

Rudy had another (half body) seizure last week that occurred in the middle of the night.  It lasted several minutes (at least 5min but maybe closer to 10min).  Almost immediately after the seizure,  he spiked a fever that fluctuated but got as high at 104 degrees.  In retrospect, we probably should have taken Rudy in right away but in our 4am fog, Rolf and I decided to manage his care at home with the help of Rudy’s emergency seizure medication and Tylenol to control the fever.  Rudy was lethargic, congested and feverish for the next four days but finally took a turn for the better on Father’s Day and is definitely on the mend now.  He started summer school on Monday and had a good physical therapy session today although both activities left him winded and tired.  I talked with Rudy’s neurologist the day after the episode and he is recommending a medication change once we get some blood test results.  Although we’ve chosen to manage the last few seizure episodes ourselves at home, there is always something just a little different in each episode that makes it hard to know what to do…we hate to run to the ER every time something happens and yet would hate to not go when we should!!   Maddening!!!  We relied on the kids more than usual to watch Rudy while we tried to maintain our schedule for the week and Max finally told us that he gets nervous watching Rudy when he’s sick so we adjusted things a bit…sweet boy!  I’m so glad he felt comfortable communicating honestly with us.

So, Rudy is on the mend and we’re holding down the fort here at home while Rolf and the big sibs head off to Boston for a family wedding.  I’m sad to miss this special family gathering and celebration but after last week, I feel like our decision to keep Rudy at home is confirmed.  We have a full week of summer school and therapy as well as some extra rest time too.  ‘Hoping its a quiet, uneventful week!  We haven’t engaged in any specific discussion about the heart transplant since my post on the 1st.  Rudy has an appointment with Dr. Harake (SB Cardiologist) next week, so we’ll talk more then.  I have a few follow-up questions for him and so I’ll share more after this appointment.  We appreciate your continued prayer for wisdom and discernment!  🙂  Thank you friends!

‘Wishing you all safe and happy summer travels!!!  🙂

We did it!  We finished this school year strong with the non-stop activities of the past 6 weeks finally culminating to yesterday’s last day of school.  This past week was particularly crazy so I’m happy the next couple of weeks are low key before Rudy’s summer school schedule begins.

We’re so grateful for the great year all the kids had in school this year.  There will be some big changes next fall as Rudy will transition to the Goleta Unified School District and, I hope, to a blended schedule that will include time at our neighborhood school with Olivia & Maxo will make his move to join Wilson at the high school!  Exciting stuff…

For now, though, I’m praying for a refreshing summer that includes some rest, some fun and a whole lot of creativity.  🙂

Happy, Happy Summer Everyone!!

As you can see, we made it home safely from UCLA Thursday and Rudy was all smiles during his last day of school and special graduation celebration on Friday.  Life is surreal…one day we’re  having discussions about Rudy’s inevitable heart failure, potential transplants, the availability of hearts Rudy’s size & some pretty sobering statistics in general and the next day he’s enjoying a special day at school with his classmates celebrating graduation…fabulously ordinary events in the life of a typical preschooler.

It’s hard to describe Thursday’s consultation.  It was a good day…we had the opportunity to ask a number of questions and we got some helpful information but it was heavy and I ended the day drained and a bit heartbroken.  There is no simple synopsis but I’ll try to keep this concise.  Essentially, a heart transplant could very well be an option for Rudy but the process to determine his eligibility is long and consuming.  It would require us to go to the heart clinic at UCLA every 3 months initially for tests, evaluations and monitoring.  It would require a consensus among his specialists and their commitment to focus their care with a potential heart transplant in mind.  It’s a process that will likely take years and  at no time is there a guarantee of a heart.  If just one of the many critical variables considered doesn’t align just right, Rudy would be off the list.

I was surprised to find out that the average life span of a successful heart transplant is 10-15 years.  I suppose if Rudy were in the final stages of heart failure, I’d feel a bit different about it but right now, 10-15 years seems tragically short.  A second transplant could be considered but with  each surgery and with each heart transplant, the donor pool gets smaller and smaller due to the increase of antigens.  The emerging technology of mechanical hearts could eliminate the need to transplant human hearts all together and could be available to pediatric patients like Rudy in just a few short years…could, could, could.  There seems to be alot that could happen!

Right now it feels like a huge and complicated gamble where success is measured by a few years and not decades…a deeply emotional investment with lots of risks and no guarantees at any time!!  Sad sigh.  I’m grateful for the opportunity to pursue it but there isn’t a big sense of relief in considering it if that makes any sense at all.  Luckily Rudy is currently thriving and strong and is no where near the need for the transplant but the larger picture is weighing heavy on my heart and I don’t know where to begin processing the big binder of information we were given yesterday.  I’m convinced this isn’t the week to begin…there is much to do in the next 6 days to finish this school year well…and there is much to do in the life of our family this weekend alone so as best I can, I’m going to set aside the big questions I can’t seem to face today  and fervently pray for God’s grace and wisdom to face them tomorrow.

Thank you for praying for us on Thursday…Thank you for loving our family so sweetly.

A couple we know from our days working in the inner city lost their son fighting in Iraq in 2004.  He was 21 years old.  Our old friends are on my mind today.  I have a son who wants to join the military…so much so that he is looking at schools with good ROTC programs.  I admit part of me is hoping it’s a desire he’ll outgrow but I am very proud of his sense of duty and his patriotism.  I’m grateful he has placed a value on “preserving freedom” and I wonder how that will play itself out in his life.  I try hard not to take freedom for granted…how blessed I am that it’s all I’ve ever known!  On this Memorial Day, I remember with deep gratitude the countless men and women who gave their lives to establish and defend MY freedom.

With Memorial Day comes the start of a new season!  Spirits are high in our household as the end of school nears (only 8 more school days left!) and summer is in the air!  Sadly, Wilson broke his arm last weekend playing an epic game of zombie tag which means he’s starting out the summer with no drums, no video games and no swimming but luckily he’ll only need his cast for 4 weeks so he has the second half of summer to look forward to. 🙂  Max (my lover of the culinary arts) has committed to cooking dinner for the family a couple of nights a week this summer.  He’s excited to master a few more recipes and I’m excited he wants to do it!!  We’ll see how that plays out for all individuals involved.  Ha Ha  Sweet Livy is excited to host swim parties, go to soccer camp, paint her nails (she’s becoming quite the nail polish artist) and craft.  I’m praying for a summer that refreshes them all.

It looks like we may be at the start of a new season for Rudy too.  We received a confirmation call from UCLA late last week to meet with a portion of the heart transplant team THIS Thursday, May 30th!!  You may recall that our local cardiologist communicated a couple of appointments ago that he felt it was time to begin “transplant talks” with the team at UCLA for the purpose of gathering information and  getting Rudy on the radar.  It took a few weeks to get all the paperwork and insurance authorizations approved but we’re clear to proceed now and, actually, Rolf and I are a little surprised they’re getting us in so quick.  Our initial consultation is with the head of the pediatric heart transplant program (Dr. Juan Alejos), the program nurse manager and pre pediatric heart transplant coordinator and a social worker.  We need to arrive at 8am for an echocardiogram, we’ll meet with Dr. Alejos et al at 9am and then have some more tests and lab work to complete before we leave…it’ll be a full day.  They’ll most likely want us to get a heart cath on the calendar as part of the standard procedure.  Our understanding is that Rudy would not be considered a candidate (for the Glenn OR the transplant) at this point because of his pulmonary hypertension but Rudy’s pulmonologist seems to think a heart/lung transplant is something we could consider so we have much to discuss with the team…so many questions, so many thoughts swirling around.

The opportunity to pursue a heart transplant would be an absolute gift, a miracle really, and it’s worth starting the process to see where it leads but it’s also one of the most terrifying scenarios for me.  The path we are on now is not perfect but it’s known…it’s familiar and we have learned to navigate it.  The transplantation journey is unknown, it involves so many critical variables that need to align just right, it feels complicated and scary.  I could burst into tears just thinking about it!  Too much analysis at this point is premature but we’re committed to carefully engage in the process and we pray for God’s guidance and wisdom.

We have much to be thankful for and I can’t tell you how grateful I am to be consulting with people we know!  This situation could be so different…meeting doctors and surgeons for the very first time at these initial consultations, needing to review Rudy’s complicated medical history with each new specialist, etc, etc.  Instead, although we are starting a new process with a different department for an alternative treatment plan, the people are the same.  The Pediatric Heart Transplant Team includes Dr. Reemtsen (Rudy’s surgeon), Drs. Alejos (program director) and Perens (Medical support) and Halnon (Medical support) and they all cared for Rudy during his first 7-months in the hospital.  They are familiar faces to us and people we trust…that is of GREAT comfort.

We sure would appreciate your prayers…prayers specifically for our day at UCLA and for the days ahead that are so full of activities important to the big kids and our family:

Wednesday May 29:  Max’s 8th grade performing arts class production of “FAME” (Max is excited because he plays a significant character)

Thursday May 30:  Consultation with the Pediatric Heart Transplant Team at UCLA (Clear communication all around and calm hearts-for those of us with all 4 of our heart chambers!)

Friday May 31:  Rudy’s last day of school (A party, piñata, fun!  Don’t want to miss that!!)

Thursday June 6:  Max’s 8th grade graduation, Last day of school for Wilson and Olivia!

Thank you dear friends!  We are so grateful for today…we are hopeful for tomorrow!  As always, taking it all one day at a time…

Max’s video is making the rounds on FB but it’s a must-see here on Rudy’s Beat!  I’ve watched it many, many times and it still makes me laugh!