January 7 2018

Happy New Year.
Good grief! Where has the time gone.  We went from counting each day to counting months.  That's a good thing.  December was about as 'normal' as it could have been.  Between Christmas concerts, Megan and Hunter's basketball, school, dance, boy scout camp outs, work, and the buzz of the holiday it was and still is good to be home.  I can still say after being home for over 6 months now (yes it has only been 6 months) it is good to be home.  We still don't take it for granite.

In January, we finally go back to Calif for checkups.  Not sure when, next week I think.  This time it is only 2 of the 3 going, Lindsey and Gage are up to bat, Sierra has the month off.  All we know is the kids keep taking their meds, and every 3-4 weeks Stacy draws blood.  Their doses have changes slightly, but all is going well there.  Gage's predisone is down to a very low level.  The swelling in is face is almost all gone.  If you compare pictures back in June until now you can see quite a change.

Other than that, we have enjoyed a relatively 'normal' Christmas season.  Stacy is teaching dance to the the high school girls (including Sierra), Megan is loving basketball, they are currently 12-1 and lookin' for more.  Lindsey is all over the junior high social seen. I am coaching Hunter in YMCA basketball. Gage Aurelius still thinks he is a comedian!  He is playing YMCA with a bunch of his cousins and buddies. Of course there is the normal stress and struggles we all go through, but we are  taking it in stride.

Very low snow this year.  Last year we had 1-3 ft of snow in our yard. This year we have 1-3 inches.  Hopefully we get more in the mountains for the upcoming irrigation season.

That's really all I got.  If I am missing something, I sure can't think of it.  Even though we do not talk about it much, deep down Stacy and I both agree that this is borrowed time.  The health of 3 heart transplant kids can't last forever.  So we will continue to enjoy the life we have and not dwell on what might or could or may happen.

After considering the show and what we have experienced in California, we came across a quote in our CPA literature.  We thought this was very appropriate given the friends and life changing experiences we had.  Not saying we won't return just not yet.

All changes, even the most longed for, have there melancholy; for what we leave behind us is a part of ourselves. Anatole France

 Each Christmas eve we do a 'traditional' tubing up at Little Alps.  We had over 42 people there including cousins, aunts, uncles, and friends.  We tried to leave all the 'responsible' adults home.

           

Yah, that's the 'Man-of-Steel'

 Hunter was eating it up!!

 Lindey's 14 birthday.

Ole college buddy Wade Tishner.  Super funny guy to hang out with.  

 Lindsey and the junior high dance team.

 Our glorious Christmas tree. Megan had the honors of the star.

 This was Nick and Hilary Cox's house a month ago.  A horrible chimney fire destroyed their home. 

 My Dad and Uncle Allen.  Dad was laughing at a story Allen was telling him.  It was a fun picture to capture. 

 This is the infamous Powder Valley gym.... Christmas concert style!

Lindsey, Abby, and Ayla makin' it happen. 

The Show, Heartbreak

What a nice Thanksgiving weekend. We had my entire extended family here for the holiday, 33 in total.  We played basketball, cut and split our firewood, did a few ranch projects, shot shotguns, ate until it hurt, and watched the MSNBC Heartbreak .

We we all nervous to watch the show.  With all the interviews we went through over the years, we didn't know how it would come out.  We were pleasantly surprised at the results. We thought the show was done incredibly well.  Sandy Cummings did a great job putting it all together.  She was able to bring out some of the untold struggles we had.  I am still not sure why someone didn't tell me about my hair as the doctor was reporting on Gage's transplant.!?!?  Anyway... it was neat to reflect on the donor family, the doctors and nurses that helped our kids, and the good friends we still have in Calif and here in Oregon. There were times of laughter and plenty of tears.  Some of the toughest memories were those when we had 2 heart issues going on at the same time.  In those moments, it was hard to keep it all together.  It is good to have that part of our life behind us.  Thanks Sandy, for all you did. It will be fun to show this to our kids and even grand kids years down the road.

We continue to make trips to Calif for checkups, tests, and med adjustments.  Our next planned trip is in January.  Someday, hopefully deep into the future, the hammer will fall and we will have to return to Calif due to a complication......but not yet.  We try not to think about that, it doesn't do any good. For now, we are happy to all be home and treasure the time here.

Thanks Sandy for the shirts

 The cousins

 Aunts, Uncles and Mom and Dad

 The show audience

 Throw in a little Thanksgiving dinner

 And shotgun shooting

 The Cultural Celebration in Boise

Wrap in up with a little BBall on Thanksgiving morning.

MSNBC Announcement

Time to check in.  'Normal' life has been chuggin' along at a nice pace.  Honestly, there is nothing major to report on the 3 heart kids. After their last biopsies several weeks ago they all sitting at zero!  Our next scheduled trip to Calif is in January.  So for now, we are going to live it up.

Big news is the announcement of a special documentary that will air on MSNBC.  It is a 2 hour documentary that follows our journey from Sierra's near death experience and transplant 11 years ago to Lindsey's 8 month wait on Traeh Nilreb (Berlin Heart) to Gage's pacemaker, defibrillator, LVAD and the 17 month wait as the Man-of-Steel.   Sandy Cummings, the producer, has seen the highs and lows and has done a great job putting the story together. As far as we know, it will air Saturday, November 25, 6-8 Pacific / 9-11 Eastern.   We will pass along any news as we get it.

In other news....Megan's volleyball team had a great season finishing 17-1 in league, but fell short at districts. Now it is on to basketball for Hunter and Megan.  They are both working really hard and really love it.  Stacy and Aunt Emily are teaching the high school dance club including Sierra and a bunch of other kids.  They are having a blast!  Lindsey is also doing dance for the junior high and loves it. Mr. Aurelius thinks he is a comedian and is looking forward to YMCA basketball.  Stacy is the school nurse and is back to working one day a week as an OB nurse.   As for me, I do what I am told, but did had a GREAT time at elk camp.  Me and 7 other guys packed in about 7 miles into the Eagle Cap wilderness and spent a week hunting elk and playing pinochle.

Oct 22, Great Week, Great Biopsy Results

Last update, we were heading to Chicago.  Our whole family (except Megan who stayed for volleyball), was flown to Chicago to participate in a gala for a not-for-profit called "Saving Tiny Hearts." It was founded by a couple who had a child with congenital heart defects and they have been going strong for 12 years.  They raise funds that go to research for heart disease and this year they wanted it to go towards cardiomyopathy.  They asked if our family would come and tell our story at their gala.  We were happy to go.  We spent Saturday walking around downtown Chicago (in the rain) and went to the Fields Natural History Museum.  The only down part was that it was pouring rain the whole time.  By the time we walked to the museum from our hotel (almost 3 miles) we were soaked!  It was still fun and memorable.  We attended the gala that evening and met some very wonderful people.  It was a great experience and we were honored to be invited to share our story with the 500 people attending.  As we told our story, we emphasized and highlighted how far research has come in the last 11 years from Sierra's near death ordeal in 2006 to Gage's 512 days of waiting on the machine.   The research is still needed to help understand the disease and what doctor's can do to improve kid's lives.   Anyway, it was a good experience to be able to share our unique story.

Sunday we flew back from Chicago. Sierra, Gage and I took a flight from Boise to San Francisco for their biopsies the next day.  Jason, Lindsey and Hunter returned home to Oregon.  Gage and Sierra both received ZEROS on their biopsies!! Very excited about that, especially since they told us Sierra's pressures were elevated the day of her biopsy.  Sometimes this can mean nothing and sometimes it can indicate rejection.  We were relieved to hear it was nothing and she received a zero.  Gage, Sierra and I returned home Tuesday evening.  We were home for a couple days then Sierra and I left (again) for Salt Lake where Sierra purchased a used car for herself and we went to pick it up.  We left Thursday, spent the night in Logan with my family.  Friday morning she did a campus tour at Utah State University and then we went to Salt Lake.  After picking up the car, we headed back home to Oregon so we could be back in time for Megan's district volleyball tournament Saturday morning.

Jason stayed in Oregon and worked with Hunter to get him ready for his first boy scout camp out.  Jason and Hunter left Friday for his campout and had a great time.  Saturday was Megan's district volleyball tournament and for whatever reason, their team was just not "on." They ended up loosing and not placing in districts. It was a really sad day.  She's still working through it. Quite a bummer for her and her team.  She did receive first team honors and the team won the dreaded sportsmanship award.   Nothing wrong with good sportsmanship, it's just that the award NEVER to the winning team. 

Now its on to the next adventure.  Jason is leaving for elk camp in the Eagle Cap Wilderness.  Hunter is into basketball.  Sierra and Lindsey are doing dance (which Stacy is coaching).  Gage is itchin for YMCA basketball.

So life is moving on.  We have no trips planned to Calif until January.  So we are livin' and lovin'.

A great fun in the rain. Heading past Trump Tower.

Don't ya love Hunter's look. 

Sierra, Gage and Stacy off to Calif.  The rest of us heading home.

Just finished cleaning the baler out.

Hunter's first boy scout trip. Heading across the Snake River to the hot springs at Oxbow.

The Sportsmanship Award....

And 1st team honors...