Sunday, October 22, 2017

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...

4 comments:

Lee C said...

I’m glad you are all doing so well! When do you sleep!,,

The Reading Nook said...

Congratulations on the zeros for Gage's and Sierra's biopsies! That's wonderful! I'm glad everyone is doing well and having a wonderful time! I hope you all have a Happy Halloween!

Taryn said...

This is incredible! Watching the special right now. I've been following you for 5 years as well and also have a heart condition which up until no was fixed and now it's bad again. Hoping meds work. All my love and prayers

Mickey the Old Preppie said...

Your walking in the pouring rain in Chicago reminded me of our moving in the pouring rain and my stepping on a rusty nail at the dump and my looking up, after calling my wife to tell her about my immanent trip to the ER, and saying, "God, did we really need this today?"(Jokingly) It also reminded me, a Vietnam-era veteran, of the day our memorial was dedicated. It rained, of course, canceling the military flyover. Again, I thought, "Why did it have to rain today?" Someday we will know it all, but for today we can be thankful for the Bingham family and all their legion of supporters for the lessons they are teaching us about courage and faith. Praise God.