Day 503

Yes, we have joined the 500 club, not sure what that means, but we are there.  Heading back to Oregon for a fun filled week at work.  Megan flew into Calif yesterday.  As predicted it was so nice to have all our family together, even if it was for only one day.  Megan will be staying in Calif for the next week during the Oregon spring break.  Stacy has lined up some babysitting jobs for Megan to help with a little teenager cash flow. But mostly, it is good to have Megan with her mother and siblings.

Really nothing medical to report on the kids.  Gage is still a status 1A and waiting for that perfect match. 

Gage had his first coach pitch baseball game yesterday and loved it.  Hunter’s baseball season is going well.  The team is 1-5 but continuing to improve.  Hunter is convinced he should be playing either pitcher or catcher a heck of a lot more than he is.  Coach finally let him pitch for the first time last night under the lights.  He pitched 2 batters and didn’t walk them.  They both hit 2 grounders off him, so he as happy with that.

Sierra and Lindsey are very busy with school.  Sierra is still working 1-2 shifts a week at Tin Pot Ice Cream.  That is 1-2 shifts more that her Dad thinks she should be working.  She as a ton of home work and test prep to do for the upcoming SAT/ACT tests.  If she was on top of her studies and assignments that’s one thing, but with the demands she has at school, the work seems to be stretching her pretty thin.

In other Sierra news, she has quite a group of friends she hangs out with at school.  This morning she was telling us about some of the inter-group drama. Good Grief!! There is no way I would be able to articulate the teenage drama going on in Sierra's life.

We are still way excited for the upcoming 5K run at our place this Saturday.  Stacy and I have very little to do with it.  Katie Hubbard is doing a great job organizing it.  Stacy and the kids are still planning on leaving around noon this Friday and traveling all the way with 3 drivers, Stacy, Sierra and Megan.  With the better weather forecasts, the doctors are going to LEAVE Gage as status 1A and NOT suspend him from the list.  That’s a big deal!  That means if we get the ‘call’ while in Oregon, we will fly him back asap for the big dance. 

A struggle Stacy and I are facing is what to do this summer and fall. We plan up to certain parts and then we have to make choices for the next part as the wait continues.  We have planned until the end of the school year.  Planning for the unknown is a hard part of this journey.  We have possible summer sports camps, reunions, church activities, EFY, ranch work, summer school, biopsies, doctor’s appointment, and (what the heck) a vacation we would love to do.  Not to count the ‘Call’ when (not if) it happens.  Life is still going on and this time with our children is so short and precious.    A question Stacy and I ask ourselves is, ‘how would we treat this differently if this was our life style not a trial’. That might seem strange to many of you.  But the thought here is would Stacy and I do anything different if we chose this as a lifestyle (except the medical part)?  If we still have months or even (dare I say) years to wait, would we do anything different? How can we make the most of this time with our young but growing up family?  We have no answers.  The future and time frame is totally unpredictable. We are just trying to change our perspective and make the most of this time in circumstances out of our control.

Till next time

Jason

Gage and I on a fun cub scout hike at the Edgewood reserve.

 Gage's first game, he was so excited

 The morning hair ball

These were some wild turkeys just outside the RMH.

Day 495. Saturday March 18, 2017

On the plane again, heading back to Calif, via Salt Lake this time.  Had another very busy week back in Oregon.  Tax season is in full swing and the work is going well.  Always good to be home with Megan.  She is in track now and is doing (or is trying) the long jump, high jump, triple jump, and the dreaded 300 hurdles.  They had their first track meet in Harper, a very small town outside of Vale.   According to Megan she took 4^th in the long jump, 3^rd in the triple jump, 7^th in the high jump and like 5^th in the 300 hurdles,…. And got a nice rosie sunburn.  I didn’t go but given the company she was with I know she had a good time.

Gage had his first baseball practice the other day and loved it.  He is the only one I know of who does NOT want the transplant right now.  If he did get the ‘call’ no more baseball.  Anyway, today is opening ceremony with another practice for Gage and a game for Hunter.  That is really the only reason I am heading back today, I wanted to see as much of the boy’s games and practices as I can.  After this upcoming week in Calif, I will be in Oregon for 3 weeks to finish tax season.

Come to find out, Gage had another issue with his HeartWare, so instead of heading to baseball practice, he had the wonderful opportunity to spending about 3 hours in the CVICU getting the controller changed out.  Needless to say, he was NOT in a good mood.  Everything is ok, they just had to change the controller out.   

Earlier this last week, Gage had a doctor’s appointment with both the heart doctor and the kidney doctor.  The kidney’s usually take a hit with heart failure patients, but Gage’s kidneys are in good shape.  So they were both happy to inform us that Gage is STILL a great candidate for a transplant. After 16+ months, I sure hope so!   To our surprise, they both gave permission for Gage to go home for spring break with OUT being taken off the list.  That is huge!  I will be working hard to make sure we always have a flight lined up to get him back for the big dance with Dr. Katz Meada.

This Saturday, Megan will be flying down to spend spring break with the family.  That will sure be good to have her with the rest of the crew.  After the Oregon spring break they will ALL be driving back to Oregon for the Calif spring break.  In the middle of all that, we will be participating in the 5k run Katie has organized on April 1.  Any of you who still want to register, you can register at www.heartsforbinghams.org/5k/  At the conclusion of spring break, on April 8, Sierra will have the ever exciting and oh so stressful ACT test.  She has been working on preparing for this. Hope it goes well.

One other last comment and on a more serious note, our good friends almost lost their little boy in a tragic drowning.  What a blessing and miracle that they were able to revive and save that precious little boy.  What a scary and tragic event that must have been.  How dare Stacy and I pray for and wish that Gage will get his transplant 'soon' when that is the type of tragedy it will take to get it done.  It was sure a good wake up call for Stacy and I.   Gage is healthy and he will get his turn when the time is right.

That’s it for now.  Hate to leave Megan, excited to see the family.

Jason

Stacy took a day off from being with Gage and went on a fieldtrip with Hunter's fifth grade class.

Gage at his first baseball practice.

Topped the week off with a scout carnival and middle school dance.

Planned on going to baseball practice, but got to go to the hospital for a controller change instead.

     Megan sporting her awesome track gear.

Anyone who has heard me complain will get these last two pictures.

Day 490…. 16 months and still going strong.

Well it’s about time we update the blog….. It has been over a month now since we have update.  Unfortunately we don’t have any excitement to report.   However, as my good mother would say, ‘I need to know there is nothing to know’. So here is what we know…..

Gage’s HeartWare continues to do well.  He is in perfect health for the transplant.  His weight is slowly trending up; around 54 lbs. His blood pressure is good around 61.  (His blood pressure is totally different since he doesn’t have a pulse).  Kidneys and liver are well. Appetite still stinks but they have increased the feeds and he is tolerating it fine.   He did throw up this morning, not sure why, just sometimes he's a bit off   So tonight Stacy will have the lovely experience of shoving that thing back in where it came from. Not fun!

Gage is still pretty scared of the upcoming transplant.  After some of the tragic tough stories we have seen around the RMH and hospital, he is convinced he is not going to survive the transplant.  About a week ago he had a very vivid nightmare relating to the transplant, details I just can’t share here.  I will say it was a horrible dream for an eight year old to have. Stacy and I both agree the best thing we can do for him is keep him busy and keep his family close by.  Idleness is when the fear can set in. 

This Wednesday Gage starts coach pitch baseball.  He is super excited about that and counting down the days (2 more to be exact).  Jenna (his nurse practitioner) and the other doctors are quite excited for him to play.  Stand by for that.

Other than that it is business as usual for rest of the gang.  Sierra is preparing hard for the SAT and ACT tests.  She is taking some prep classes and working hard at her school.  Lindsey just has a ton of homework.  Frankly, she just doesn’t want to grow up. She enjoys being that little girl.  She is getting some afterschool assistance to try and keep up.  Hunter is all over the map.  He just finished basketball, starting baseball, loves his school and is doing surprisingly well at the cello, yes the cello.  He is a kid with a huge head of hair, and a lot of energy to burn.  If the energy isn’t for good then it’s targeted against his siblings and it drives us crazy!!

Speaking of crazy, we are still living in the cozy 1 room 2.5 bed RMH sharing a kitchen, utensils, appliances, fridge, and other items with 60 of our closest friends.  Over the last 16 months, we have adjusted to a new way of living, but it is something you never quite get used to.  We still miss our Oregon home. 

Speaking of Oregon, I am currently flying home for another busy week at the office and see our daughter Megan.  It was so enjoyable over the last several weeks to be home with Megan during the basketball districts and state tournaments.  They did a good job and ended up taking 6^th in state.  We are looking forward to getting her back with our family, just need to figure out how to make it all work.

Now, speaking of ‘making it work’ we have spring break coming up. Oregon break is first followed by Calif break the next week.  We are flying Megan to Calif during the Oregon spring break, or the last week of March.  Stacy and I are trying to figure out how or what kids can and should go home to Oregon for Calif spring break.  Again, stand by for that.

The 5K run is still on schedule for April 1 right in between the two breaks.  This is a fund raiser for Gage’s heart fund.  The run/walk is being planned by Katie Hibbard.  She is doing a great job.  All of course are invited to participate.

Few concluding comments.  Stacy and I are doing great.  I have heard many of you say ‘Jason, I don’t know how you and Stacy do?’. The answer is, your right, you wouldn’t.  What I mean by that is that we have had to change everything about our lives.  Our home life, our school, our work, doctor appointments, our kids activities, our parenting and even our quiet time, everything is different from what it used to be.  Someday it may go back, but not all the way, it will always be different.  Really it all changed when Lindsey, our 3^rd child was diagnosed with the same heart disease Sierra had, some 5 or so years ago. We thought we were through it with Sierra, but when 2 more of our children got it, we knew it would never be the same again.  Not complaining, that wouldn’t do any good, it was just some thoughts.

 Till next time, or maybe even the 'Call'   

On a more exciting note, our good buddy Owen got "the call" he goes in for his 2nd transplant at 10 pm tonight.  Keep him and his donor family in your prayers.  We are so happy for Owen!

It has been beautiful weather in California.  We have really been enjoying the sunshine.