Day 224, Remembering June's from the past.

June 20, 2016

I wish with all my heart there was something exciting to report.  Gage continues to do well as he waits his turn.   Can’t help but wonder since he is doing so well, if that is not slowing his progress on the transplant list.  They say he is still status 1a, but I still wonder if a heart became available and there was a truly sick desperate child in the hospital (like Sierra 10 years ago) who would get the call. I guess I am ok with it if that is the case, as long as Gage gets his turn with a perfect match.  Nevertheless, summer break is in full swing and we have a full summer schedule ahead of us.  Eventually a transplant is going to interrupt our summer, or fall, or winter, or spring plans, but not yet.

Megan has been home in Oregon doing summer basketball with the Powder Valley team.  The varsity team went to 2 back-to-back camps in the Portland area.  It has been a great experience for them to play and practice against bigger schools. 

With work responsibilities and Megan’s schedule, I have been in Oregon a lot more since school got out.   This last weekend, I drove to Calif with our suburban and am now flying back to Oregon.  It was a great Father’s Day weekend with the family (minus Megan).  There were countless sad faces in the Bay area as the Golden State Warriors fell to Cleveland.

Lindsey is in the middle of a 3 week summer school program at Termin Junior High.  It is pretty low key with no homework, so she is good with it.  Hunter has basketball camp this week in Calif, he still needs activities to do to keep him (and us) from going nuts.  Sierra had a fun week at our church’s young women’s camp, and now she is applying and interviewing for a summer job.  This has been a great experience for her to create and post her resume.  She will have an interview this week for a job at an ice cream shop in Los Altos.

Stacy and I are planning family reunions for both sides of the family this July.  Could be a really fun couple of weekends coming up with cousins everywhere.  Hope we can pull it off.  We figure since we can’t go home, we will bring, or at least invite, the aunts, uncles, cousins and grandparents to us.   We would all love to be interrupted by a transplant, but we are not planning on that. It will happen when it happens.

The month of June has had many life changing memories for us.  10 years ago, June 2006, Sierra was very sick as they introduced the idea of transplant to us and where Stanford was. 4 years ago, June 20, 2012, Lindsey was put on the Berlin Heart as she began the 8½ month emotional rollercoaster and wait in the hospital. And 1 year ago, June 17, 2015, Sierra received her second transplant as her first transplanted heart was failing from coronary artery disease.  Maybe Gage can be added to the June tradition?

I will be home in Oregon for 2 weeks now until the 4^th of July weekend.  Last year I spent the 4^th in Oregon by myself and I won’t do that again!

Till next time

Jason

 Fun pictures from Fathers Day weekend

Pictures from 1 YEAR AGO ago this month

Pictures from 4 YEARS AGO this week.

 4 years ago, prior to the Berlin.

 We still count our blessings.

And....Pictures from 10 YEARS AGO this month

June 8, Summer Begins

Had a very enjoyable few days with Gage.  Plenty of good Daddy/Son time.  Friday Gage and I went to the new Ninja Turtle’s movie.  It was awesome (for the Man-of-Steel), a bit painful to his Dad. 

Also took him to the hospital Monday for the usual blood draw and clinic.  As expected no major changes just small adjustments to his blood thinning meds. Right now he has this thing about counting Tesla’s.  For those of you who may not know, Tesla’s are high end electric cars.  Very nice, very fast and 100% electric.  Anyway, Gage’s big thing is to count them as we drive around the Silicon Valley area.  Yesterday we broke the record.  We saw 23 Tesla’s in one day as we drove around Palo Alto and Los Altos.  Now I am teaching him all the other different cars such as Audi, BMW, VW, Honda, Toyota, Kia, Infinity, Lexus, MB, Mini’s, and good ole’ Fords and Chevy’s.   

Good to hear Chelsie Thompson is doing better and heading home.  Gage and I have been praying for her and her family every day.  They will have big adjustments in their lives.

Stacy flew in last night and will be here for the long haul.  Hate to leave my wife and son again, but right now I am needed on the home front. Speaking of, the other 4 kids are home and doing the summer break thing.  Sierra and Lindsey need to be back in Calif this weekend for summer school and camp.  Gage will be excited for that.

Stacy had a great time back home with family and friends.  Almost felt like a little bit of normal. But really it feels like a dream.  Home is there, but not yet.  Someday.

Just to be clear, we have temporarily moved from the new RMH to the Van Elderen’s house in Los Alto’s Hills.  We are house sitting for them while they are at their summer home in Northern Calif.  It’s a nice house with plenty of room.  We are excited to invite friends over for dinner and have family reunions this summer.  The new address is 25601 Fernhill Drive Los Altos Hills, CA 94024.

Still enjoy the comments from friends and family.  As always we read and enjoy each one of them.

Last of all, I’m a little ticked off at myself. Just went through airport security and I forgot about my brand new leatherman in my computer bag. Grrrrrr.  I have done this so many times you would think I would check all the little corners of my bags, but not this time.  That is the 2^nd leatherman they have taken from me!!

Anyway, life goes on. Here’s to 7 months on the list and crazy curly hair.

Till next time

Jason

Stacy Here,

I am well overdue to give an update.  Jason does such a great job, I don't have much to add.  Jason did very well with Gage while I was gone.  His dressing change looked clean and not infected.  Gage is still gaining weight, so he received all the feeds he needed.  He made it to his appointments and blood draws. All-in-all, Jason did fine.

Like Jason said, I was able to go home for a weekend.  We decided it was a good time to let the kids go home for a little bit and for me to go plant my flowers and garden and clean the house.  For 7 months Jason has been taking suitcases home of things we no longer need.  He is very busy when he gets home and just has time to empty the suitcase as he is heading out the door to fly back.  Unfortunately, these piles begin to grow and take over the house.  I would get one area of the house organized and would open a door and find a whole new mess to organize.  In Jason's defense, he is busy and had no idea where I would want things placed.     My mom and 2 sisters came up from Utah and were my saving grace.  In 2 days, we were able to go through the whole house and find places or throw away "piles" AND plant all my flowerbeds and garden.  I don't know what I would of done without them!  They are probably just now recovered from how hard they worked there. They are great hard workers. It was nice to see our house and sleep in my own soft bed (I forgot how soft it is).  I wasn't as sad as I thought I would be leaving, I think because I know I need to be in California right now.  It also felt good leaving the house looking lived in, with my flowers and garden planted.  My favorite hobby during the summer is my yard and garden.  I have really missed that the last 2 summers.  Maybe next year.

On an exciting note, Sunday morning, the kids and I were getting ready for church.  The phone rang and I heard a lot of excitement and commotion downstairs.  We went outside to find our tractor on fire out in the middle of the field.  Jason's dad was driving it, so there was a moment of panic when we didn't know for sure if he made it out.  Luckily, he did and we have insurance.  Apparently, a sparrow had built a nest next to the engine.  The tractor stopped and Dale saw smoke coming out of the hood of the tractor and went to investigate.  When he opened the hood, he saw the nest on fire and it just went up from there.  We are so glad he was not at all injured.    

Jason and I spent an hour (at least it seemed like) on the phone this morning just trying to figure out each kids schedule and where they need to be.  With 5 kids in sports camps, youth camps, reunions and medical appointments there is a lot going on.  Adding all that in 2 idfferent states makes it a little crazier.  We had to take each kid individually and figure out when they needed to be in Oregon and when they needed to be in California.  LOTS of juggling, Throw a transplant in there somewhere and it will be exciting. School will be starting before we know it.  And no, we have no idea where our kids will start school.  One week, one day at a time.

We were able to attend Alex's graduation from hospital school.  So proud of him.  What a huge accomplishment for someone with alot he has overcome. 

My cute neice and nephew Kate and Porter.  Helping plant the garden. 

Finally a Sunday dinner at home, we really missed Dad and Gage to make it complete. 

Hunter playing with my nephews Moris and Cooper. 

Part of the crew helping with the garden.  My sisters Holly and Tiffany.  We missed you Kelly! 

Our view of the tractor burning from our front yard. With pictures of the tractor after. 

 

Gage reading cards sent to him from North Powder school.  Thank you everyone.  He enjoyed reading them.

Day 210, Little Chelsie, and Summer Plans

Need to catch up.  After school got out last Thursday, Stacy took off with the kids for Oregon. Gage and I have been hangin' out here in Calif.  I made it through my first dressing change and he is still alive. My goal is to keep him alive and well until Stacy gets back, and so far so good.

Meantime back at the ranch, Stacy and the kids arrived home around 4:00 am Friday morning and have had a great time.  Renee, Holly, Morris,Tiffany and her 2 kids came in from Oregon to be with Stacy and the kids. As far as I have heard, they have been working hard and playing even harder.

However, the big news from Oregon is our good friends the Thompson's.  Colby and Erin's little girl Chelsie was involved in a horrible lawnmower accident.  She has had her left leg amputated just above knee.  She is currently in Seattle going needed surgeries and therapy. I have thought a lot about them as they sit by her side trying to provide the comfort she needs. Our thoughts and sincere prayers go out to them.

Stacy comes back tomorrow (Monday) night and I fly out Tuesday. Kids will remain in Oregon one more week before summer school and camps begin.  Gage's attitude has been surprising upbeat and positive while his siblings are playing with cousins back in Oregon.  Stacy said at one point Saturday there were 20 kids under the age of 16.

For the next few months we will be house sitting for the VanElderen family in Los Altos Hills.  The house is about 15-20 minutes from the hospital.  It's a nice house, but we are missing our RMH friends.  We hope to have a few family reunions this summer so Gage can see all his cousins and family.

Medically there is nothing to report with Gage or the other kids.  He has been waiting for 210 days.  On June 10th it will be 7 months.  He is still listed as status 1A but I can't help but wonder if more critical kids in the hospital may get the call before Gage.  If that is the case, I'm ok with it,  I understand, as long as he gets his turn with the perfect match when the time is right.

(last weeks post)
May 30, 2016

I was telling Stacy about the constant pull I feel from two angles.  On the one hand I feel the pull from Oregon for all the work related issues.  Even though tax season is over there is still plenty of office and ranch work to be done to support my clients, family and life style.  On the other hand I feel the pull to be with my family in Calif to help raise kids, tend to their individual needs from school, sports, activities, and of course the medical needs.  No complaining here, and I mean that, it’s just a tug-of-war I have felt for many months and wanted to share.

Great birthday and Memorial Day weekend.  On Friday we went to a home that had a pool for the kids (and myself) to play in.  We felt bad for Gage watching him stand on the edge.  He had fun with a big squirt gun as he shot water and annoyed all of us in the pool.   As a seven year old, he was good sport!  It drove us crazy watching him walk around the edge, wading in, and bending over to fill his giant squirt gun with the Blackwood and driveline keeping him going.    

On Sunday we went to the Blacks and Golafashans for dinner and party. It was tons of fun. 

Today (Memorial Day) we did something we have been needing to do for a long time.  We gathered up the kids, bought some Chipotle food and drinks, and headed to the hospital to visit families.  There are several families right now that have it a lot worse off than us.  There is an 8 year old who had a heart transplant three years ago, now the child has coronary artery disease and is on a ventilator waiting to be relisted (sound familiar?)  Another 2 year old child who waited in good ole’ Room 3241 for 6 months on a Berlin, just received a transplant.  We also saw 2 other kids in the CVICU that have very complicated and life threatening heart issues. Stacy has gotten to know these families, so it was a good day to take food to them, and offer a bit of empathy for what they are going through.  Unfortunately we recognized each one of the rooms they were in and could understand the stressed look in their eye. It was good for all of us.

Megan and Sierra have heavy finals this week. They are both studying hard, but maybe have different intensity levels, and different grade goals.  I will leave it at that.

Looking forward, I fly back to Calif on Thursday. Stacy and the kids (minus Mr. Aurelius) will be driving home Thursday afternoon after finals.  Yes, this means I will be with Gage alone for 4 days.  I will have to do 2 dressing changes and cleanings by myself.   Stacy has retraining me but this time I might have listened a little closer than in earlier trainings.  Stacy would NOT be impressed if I showed up in Oregon with Gage to get help with the dressing change!

 

Stacy’s mother and sisters are coming from Utah for the weekend to help Stacy and the kids with the piles of stuff that I might not have gotten to, plant the garden, and restore the woman’s touch our home has been missing for the last 6½ months.  It is starting to look (and smell) like a guy’s apartment if you know what I mean.  Stacy will then fly back to Calif to find ALL well there.  I will fly back to Oregon, then a week later, drive back to Calif with most of the kids for various summer camps and activities.  We are also planning some family reunions in Calif in July and August so there you go. 

Ya know, in the middle of all this the Man-of-Steel is going to get his new heart and drop the Blackwood and the pacemaker.  But until then, we are going to keep on keepin’ on.

Saw the nurse with an awesome man bun.  Who knows if we get to that point. Right now it is just this curly mess.

 

Till next time

Jason