Archive for June, 2013

On The Mend…and On The Road!

June 18, 2013

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!

Rudy proudly waving while going for a walk during therapy early last week!

Rudy proudly waving while going for a walk during therapy early last week!

Wilson proudly consoling a fussy, uncomfortable sick Rudy while Mom and Dad were out!

Wilson proudly consoling a fussy, uncomfortable sick Rudy while Mom and Dad were out!

June 16 - Happy Father's Day SUPERDad!!!

June 16 – Happy Father’s Day SUPERDad!!!

Olivia at the wedding of friends this weekend...:)

Olivia at the wedding of friends this weekend…:)

Wilson's first summer swim TODAY after getting his cast off!  Fun with Maxo!

Wilson’s first summer swim TODAY after getting his cast off! Fun with Maxo!

Saying "goodbye" to the big sibs on their way to Boston.

Saying “goodbye” to the big sibs on their way to Boston.

Our happy travelers!

Our happy travelers!  Bon voyage!!!

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

Our Official Start to Summer 2013!

June 7, 2013

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!!

Some more fun with Wilson!

Some more fun with Wilson!

Biiiig Huuuugs!

Biiiig Huuuugs!

The last week of activities in Livy's class included a 70s smoothie bar!  Yum Yum

The last week of activities in Livy’s class included a 70s smoothie bar! Yum Yum

June 6, 2013 - GVJH 8th grade graduation

June 6, 2013 – GVJH 8th grade graduation

Way to go Maxo!

Way to go Maxo!

Rudy fought hard to stay awake but finally fell asleep during the "S's"!  :)

Rudy fought hard to stay awake but finally fell asleep during the “S’s”! 🙂

Graduates by day...

Graduates by day…

...hockey players by night!  (Placing 2nd in the league last night!)

…hockey players by night! (Placing 2nd in the league last night!)

The class of 2017 is born!

The class of 2017 is born!

The Surreal Life

June 1, 2013
Rudy politely raising his hand and waiting his turn to lead a song during circle time!

Rudy politely raising his hand at school and waiting his turn to lead a song during circle time!

Rudy gets his turn to pick out a song..."Wheels on the Bus" is his choice, of course!

Rudy gets his turn to pick out a song…”Wheels on the Bus” is his choice, of course!

Song leader Rudy with the help of teacher Diane.

Song leader Rudy with the help of teacher Diane.

Yay!

Yay!

Rudy's official graduation from the Bear Club - his special county special ed preschool class!

Rudy’s official graduation from the Bear Club – his county special ed preschool class! May 31, 2013

Graduation after-party complete with a piñata!!!

Graduation after-party complete with a piñata!!!

Today was Nurse Alicia's last day  :(.  She's moving away and we'll miss her lots!

Today was Nurse Alicia’s last day :(. She’s moving away and we’ll miss her lots!

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.

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