May 7th. Sunday evening

Sorry for the delay.  Life started moving again. So Gage’s biopsy results came in at a 1a!!  This means the steroids did the job!  With that news they released the Mr Aurelius from the hospital Saturday afternoon, hopefully for the last time?? Who knows?  There may be something down the road, but not now. 

Going forward we hope things normalize a bit.  Stacy and Gage will go to his normal school at Nixon.  Gage also hopes to attend or even lightly play in his remaining Little League baseball games.  His Cub Scout leader would love to see him on Thursday nights.  Hunter has more playoff baseball games. Sierra has an upcoming band concert and tests, and Lindsey has the 7^th grade drama to deal with.  Megan is still in Oregon and excited that she might even have a family to live with soon.  I will be spending quite a bit of time in Oregon as the ranch work heats up and the office and home responsibilities roll on.  Basically, we don’t have time for anymore of this rejection, or heart, or kidney, or blood pressure, or seizures, or whatever else there might be.  We are ready for someone else to take a turn.

Friday night we had Terry and Jennifer Pickeral come by for a visit. Terry is my father's cousin and made a very special trip here to see Gage and the crew.  It was very kind and very uplifting.

Tomorrow is Stacy's birthday. Big four O!  It will be fun day of school, and Hunter's baseball.

We are asked on occasion how we handle the pressure, uncertainty and stress of 3 heart transplant kids.  For the most part we just ‘keep on keepin on’.  Our kids need us to be positive and upbeat.  They need to see us going on with the most normal life as possible.  We have had to change many things about our lives, but we just keep going.  The only time we really feel the stress and start to break down is when there is an acute medical problem and we can’t see the outcome.   The strange and quite unique issue about heart transplant kids is that they usually have an option, there is always a plan B.  There is either a Berlin Heart option, or Heart Ware, or the long awaited transplant.  The times we feel lost, depressed, overwhelmed, or deeply emotional is the times a heart transplant or heart machine does NOT fix the problem.  Those times include (but not limited to) Sierra’s heart failure 10½ year ago (no Berlin back then); Lindsey diagnosed with the same heart disease Sierra had (the thought of going through that again), Sierra’s 2^nd transplant (no Berlin option); Sierra, Lindsey and now Gage’s seizures (fear of brain bleed/stroke); Gage’s heart rejection and related kidney failure last week (fear of loosing him); and when Gage contracted RSV /para-influenza when he was only 3 months old (many of you don’t know about that one).   These were times we felt lost and leaned on the strength of others to get through it.  These were times we prayed to God with all the energy of our soul.  These were times many of you gave use support, encouragement, meals, and even joined us in sincere prayer and fasting.  These were times we would break down outside hospital rooms too scared to go back into the room.  But now those times are past.  Hope those days stay in the past.  Unfortunately, statistics tell us there will be more issues, some we may and some we may not have options for.  But for now we are truly blessed to have 5 healthy and recovering kids.   There are many others that are not that fortunate. 

Till next time,

Jason

   

 These are Sierra's awesome PALY friends, Tomer, Dillon, Theo, Nori, 

Gage when he was 3 months old with RSV / Para-influenza.