15 Months and 1 Day

February 11, 2017

Here’s to 15 months and 1 day on the list (or 460 days), but who’s counting?

Once again heading back to Calif aboard Alaska flight 2403. The week at home went by very fast.  Tax season is in full swing and we are a workin’ hard to get r done. Megan had four games scheduled this week. Two were make up’s for previous snow days and two were regular scheduled games.  However, for the THIRD time this year Nixyawaaii canceled their make-up game due to bad weather.  So that game will be made up for the 4^th time this Monday or Tuesday.  One of the main reasons I came home when I did was to watch that highly anticipated game.  We did play and beat (barely) Helix and Cove and will have Wallowa today.  I s

till hate leaving Megan home. I know she is in good hands with my brother and family but it’s not HER family.  It is awfully hard on Stacy to miss out on so much of Megan’s life.

Stacy made it through the week running kids around.  We did sign Gage up for Little League baseball.  He is really excited about that.  Anything we can do to help him feel ‘normal’.  Of course, he will be watched closely for his activity level and safety.

Sierra had a follow up biopsy this last week.  They increased one of her meds and wanted to see if her 1b rejection had gone down.  Now she has a 1A. It’s not a zero, but definitely in the right direction.  Her next biopsy will be in 3 months (which will be her 2 year anniversary on her new heart).

Last of all the hair.  Hunter, Gage and I have some serious hair issues. It’s all long and ugly.  I am able to keep mine in an awesome man bun but Hunter and Gage’s hair is all over the place.  Stacy and I want to hold them down and shave it OFF, but maybe we can compromise with a stylish trim.  Stand by for that.

Tonight should be fun.  In addition to the usual running kids around for games and activities, Stacy and I have been invited to a formal Valentine’s Dance.  It will be fun to get dressed up and go out for the night.  Stacy is going to look smokin’ hot!! (am I too old to be saying stuff like that)

Anyway here’s to 15 months on list.

Jason

  

Hunter and Gage at their Nixon Elementary ice skating party.  Lindsey helped Gage for a little bit, then Stacy stepped in.  He received a few bruises, a good one on his knee and one on his face. However, he was starting to get down ice skating.

   

February 5, 2017 Day 454

Another good week in the books.  

Saturday our family went to a conference for kids with IED’s (Gage’s pacemaker and defibrillator).   We went to this same conference last year and really enjoyed it.  Last year we thought that would be the last one we would be invited to, boy were we wrong.  If Gage is still waiting next year, we will do it again.  Anyway, it is tailored for kids with activities, support group, a key note speaker, and even a climbing wall.   The first class was on CPR.  The kids had the option of going to another fun virtual reality class but Gage wanted to stay with Mom and Dad and learn CPR.  So, with Gage sitting on our lap, Stacy and I tearfully watched a video of how to do CPR on a child.  I have never gotten emotional over learning CPR.  But this time it was focused on Gage and his heart issues.  If he went into one of his irregular heart rhythms and his defibrillator/pacemaker didn’t shock him back, we would have to do CPR.   We practiced on a manikin pushing down 2 inches at a rate of 100-120/minute, until we were comfortable with it.  The thought of having to do that on Gage was over whelming.  Then to see Gage with all the energy he could muster practice CPR on the same child manikin trying to push the chest down…   Anyway it was just a real humbling experience for Stacy and I.

The rest of the day was much more fun. We went to the Stanford athletic center (across the street) and climbed on the rock wall.  Dr. Rosenthal (our doctor from the beginning) was there and even took pictures of Gage working the rock wall.  Stacy, Gage, Dr Rosenthal, and I made a pinky promise to not tell Jenna (Gage’s HeartWare NP), it was a fun moment. Good to see the lighter side of a doctor we have a ton of respect for.

The key note speaker was the mother of Isiah Austin.  Isiah Austin was an elite 7 foot college basketball player that only had one eye and a rare heart disease.  Even with that he was set for the NBA draft, but with last minute events, he was not able enter the NBA.  It was a very inspiring story.  The theme was, “we can make it our excuse, or we can make it our story”.  It’s a great theme for all our kids.

Hunter had a good YMCA basketball game.  I was glad to be there for that.  At the very same time, Megan was playing her game back home.  So I was watching the app ‘GameChanger’ to watch Megan’s game while watching Hunter.

Sierra is feeling the love of being a junior.  She has plenty of homework, and college prep activities.  We didn’t realize how much is involved in that kind of stuff.

That is it for now.  Excited to see Megan and see how her life is going.

Pictures of everyone at the conference yesterday.

 And the hair continues to grow. 

Sunday, Jan 29

Day 447, January 29, 2017 Sunday

Heading back to California.  Had a good week in Oregon. Watched Megan and the Powder Valley team win two of the three games.  Friday’s game was probably Megan's best game yet. They beat up on Joseph pretty good.  Saturday was a different story.  They went to Nixyaawii, a very talented highly ranked Indian reservation school near Pendleton.  It seemed like we were intimidated from the start and our confidence was down. We lost big to them.  Megan has three games this next week that Stacy and I will miss. Tuesday they will be playing the same Nixyaawii team on our court in a makeup game.  It is not getting any easier leaving Megan at home with my bother and his family.  Frankly, Stacy and I hate not being a part of Megan’s life.  Even when I am there it is not the same as when the entire family is there.  Months ago we made the decision to let Megan go home for school and sports, in the idea the transplant would have happened by now.  Well it hasn’t happened yet and we are facing decisions for summer and beyond.  Megan is very devoted to the team and will do about anything to stay on Oregon. Stacy and I have worked hard to support all our kids.  Stay tune for that.

Gage had his normal bi-weekly checkup.  Nothing to report there.  All his levels are where they want them.  Stacy did confirm (at my request) Gage’s status on the list.  According to the doctors, he is still on the transplant list as a status 1a (list of the highest priority) and has been a status 1a since February 10, 2016. There have been no viable heart offers for Gage.  So the wait could be longer, much longer, like another year perhaps; or it could be this afternoon.  The point here is Stacy and I need to prepare and think in terms of another year of waiting. Then, if or when the transplant happens sooner than that, great!  But for now we need to start thinking in longer terms.

Having said all that, Gage continues to do great.  His health is good, his spirits are up, he is in school, and loves to bug and fight with his brother.  

Funny story to report.  The other night Hunter was asked to dump the garbage.  As a good obedient ten year old boy, he did NOT want to do it.  He gets easily side tracked, distracted or gets annoyed by someone.  Gage picks up on this and LOVES to annoy his brother. So Gage starts singing a song that he knows Hunter hates.  Hunter gets mad at Gage and a fight quickly escalated.  (Remember all this started because Stacy asked Hunter to take out the trash)!  Stacy was helping Lindsey with her homework and didn’t noticed what happened until that all too familiar blood curdling scream by Gage.   You guessed it….the garbage sack Hunter was swinging around at Gage hooked on Gage’s feeding tube and….. out it came.   Now Stacy is ticked.  Hunter still hasn’t taken out the trash, Gage won’t stop bugging Hunter, and Lindsey isn’t focusing on her homework.  Once the tube came out, Hunter was sufficiently humble (or at least compelled to be humble).  Gage was given the choice as to whether Hunter deserved to get a feeding tube shoved up his nose.  This time, Gage showed mercy to his older brother (crazy).   It took only two tries to get the tube back in, so that traumatic experience was kept to a minimum.

In other news, our good friend Katie Hubbard (Feik) is organizing a 5k run for Gage’s heart fund.  She has worked hard organizing it.  It is April 1^st at our home in Oregon . Of course all are welcome to come and joy the activity.  Stacy and/or I will plan on being there. You can register from the website at www.heartsforbinghams.org/5k

That’s it for now. Time to land in San Jose.  As they say, ‘Keep on, Keepin’ on’.

Jason

 Megan and Kim at our Powder Valley home gym. 

 Here's a blast from the past.  Going back to 1987'ish. 

 Hunter and Gage dressed up for career day.

Hunter and Colonial America program

This is a little buddy of Gages.  Her name is Debbie and she has the same backpack as Gage. She is waiting for a heart as well.  Twins!!

Fun at the RMH.

Day 440 Jan 22, 2017

It was a good 11 days in Calif. Good to be with Stacy and the kids and help support them in their activities (cub scouts, basketball, school , church, band concert, homework, meals etc.) Time to head home and check in at the office and with our long lost daughter Megan.

Sierra and Lindsey had biopsies this last week.  Pressures were good with both and Lindsey got another zero! Awesome!  She is off the hook for the next 6 months.  Sierra (bless her heart…no pun intended) got a 1B. grrrr   Not sure why, but her body keeps fighting this new heart.  It’s been over a year and a half and she has only had 1 zero.  They have increased some of her meds (again) and will rebiopsy her in 1`month (3 weeks from now).  We never seem to really relax with that one. 

Gage has been having problems with his HeartWare controller.  Nothing serious, the controller (in his backpack) was not recognizing the batteries hooked to it.  At the most inconvenient times it would start to alarm saying low or disconnected battery.  Sometimes the alarm is a nice little ‘beep-boop’ and sometimes it is an all-out fire alarm screaming at you.  These alarms would go off even if he had fully charged batteries connected.  Sometimes these alarms go off at school, at recess, at the RMH, and my favorite… in the middle of the night.   Sooooo, Friday after school we took Gage in for a checkup and review of the equipment.  They wanted to change the controller out, but to do that, he had to be checked into the CVICU for full evaluation from the team of doctors.  I’m good with all that.  The pump in his heart will stop for the 2 minutes and they want to make sure is ok.   Just know that the 2 minute process will NOT take just 2 minutes.   After the 2 hour check in and evaluation process into the CVICU, the 2 minute process to exchange the device, and the 1 hour observation and discharge, he is good to go.  No alarms since.

Stacy’s sister Kelly and her husband were in San Francisco for the weekend.  They are here from Hawaii for business meetings.  We were able to spend Saturday (yesterday) with them in the City.  For the fun of it, we rented bikes and cycled across the Golden Gate Bridge.  I had Gage on one of those bike buddies, Justin and Kelly were on a two seater bike, and the rest of the kids and Stacy were on their own bikes.  We all thought it was tons of fun. Gage was having a great time behind me. 

Hunter had his first YMCA basketball game last night.  There are 11 kids on the team, four of which are hot shot ball handlers/ shooters (not Hunter).  The team has some work to do to learn to work as a ‘team’.  I will leave it at that…

I know I have mentioned this before, but it is always a strange experience going from the ‘Calif’ world to the ‘Oregon’ world. Life is so different in each location.  Going back to our home that is still waiting, with no traffic, heavy snow, our daughter Megan, and Axlerod our dog waiting for us, it is just a strange experience.  Then, once I get used to living here, it’s back to Calif; one cozy room, six people, a wife J, 4 kids JJJJ, shared kitchen with 60 other families, one bathroom, a fridge I have to get on my hands and knees to get anything out of (I get a little grumpy with that one), and good ole traffic.  Then, once I get used to being a Calif husband and dad, it’s back to Oregon.  And around and around we go.  No complaining, it’s just a strange experience.

Someday I may share some deeper feelings about this whole situation, but not today. For now all we need to know is Gage is doing great. His attitude is good.  He is involved in school.  He has most of his sibling there for support, and he is ready for the ‘call’. Everything else is just stuff.

Ready to land in Boise.  It has been a very bumpy ride. Thank goodness I didn’t lose my cookies (at least not yet)

Later

Jason

 Gage and Hunter at cub scout pack meeting.

 Finding a vein for the biopsy IV

 Heading in for biopsy with Rosalee

 Exciting night of putting Gage's feeding tube back in.  Hunter and Gage were fighting and it got pull out.  Not a fun night.

 Lindsey had lost her blanky. Sierra found it a few days later. All smiles after that.

 And Sierra's band concert.

 And Gage's MLK Day assemble and concert.

 Getting ready for Gage's controller change out.

 A little computer game to keep his stress down as they changed the devise.  The devise is sitting next to his left leg with a battery plugged in.

 Then on to SF for a day with Stacy's sister and Justin