Happy Independence Day 2013

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!