Day 167, Thoughts from Oregon & Calif

Jason here

Friday evening.   

Made it through a very busy tax season.  I have lost track of time but I believe it has only been 2 weeks since I have seen the family, but it seems like much longer.  During tax season the days seem to run together.  It was quite a letdown this year at the end of tax season.  Once all the returns were done and the extensions filed, I again went home to an empty house.  It was like training for and running a full marathon, but when you get to the finish line, no one was there.  You just finish the race, and go home.  That evening I didn’t know what to do.  It was a bit of an emotional evening for me. 

The day after tax season is a favorite day for my wife and I.  Under ‘normal circumstances’ it is a day we send the kids off to school and spend the day working in the yard and garden.  It is something we both enjoy and look forward to each year.  Well this year (and late year for that matter) has not been a ‘normal’ year.  I did work a bit in the yard with my wonder and dear mother and good ole' Axelrod (the dog), but it just wasn’t the same.  The main reason I didn’t go back to Calif the evening after tax season was the spring ranch work.  There is so much to do in the spring, and when tax season is in full bloom, the ranch can get quite neglected. So I have spent the last few days getting field work done, starting irrigation water, cleaning up around yard, and still working in the office.        

Right now I am pulling off a fast one.  My parents told Stacy that they would like to visit her and the kids this weekend.  They left today (Friday) and should be there late tonight.  Stacy arranged for them to stay at a friend’s house and then could be there for the weekend to go the kids games and activities.  I was going to stay home and get ranch and office work done.  But this is NOT the truth.  Actually, my parents are NOT going to Calif. I am flying down for a week and a half to see the family.  Dad and Jake will have the huge responsibility to keep the spring irrigation water going and keep up with other ranch duties.  I am long overdue to see the family.  I have arranged rides from the airport and have made up stories as I have talked to Stacy today.   Should be fun to just drop in on her and the kids around 11:00 pm tonight.  I am very excited to see them.  It feels like it has been gone for a lifetime.  Just to be clear, my parents are NOT going to Calif.  That was just a front to let Stacy know she will have extra drivers for all the activities going on Saturday. 

As Mom and Dad called Stacy you feel the excitement (or lack thereof) in Stacy’s voice.  In her mind she has to be thinking, ‘Why can’t Jason come here for a visit instead of his parents?’  She would never say that, but that is what she is thinking.  What am I saying, I have no idea what a woman thinks, but that is my best guess.   Anyway, I am on the plane now and should be there in about an hour. 

Yesterday, Saturday, was the big halibut feed / fund raiser for North Powder athletics.  It is an event the whole community comes out for to support.  To put it in perspective, North Powder has a population of about 400, they sale and feed about 1200 people.   My aunts and uncles from Utah come up to support Uncle Allen, (the head basketball coach and organizer of the fund raiser).  I considered staying for the event and leaving late Saturday, but that meant missing more of my kids activities and leaving Stacy with trying to be in two places at the same time. 

When I am home in Oregon I carry a lot of guilt. The only reason I am home is to work as hard as I can to support my family, then return to Calif to see the family.  If there is free time while in Oregon I start to feel guilty.  So when my work is caught up or at least organized, I leave for Calif as soon as I can.  That is one of the reasons I didn’t stick around for the halibut feed and see my awesome aunts and uncles.  I know I need to take time for myself, but I would rather be in Calif supporting Hunter with his baseball, while Stacy is in Santa Rosa supporting Megan in a Midnight basketball tournament.    Anyway, those are some deep feelings I wanted to share.

As for how the kids are doing.  Stacy says they are doing fine.  Sierra has had a few medicine adjustments to counter act the 1B rejection.  They also increased her Lasix, to help pull off more fluid to try and decrease the heart pressures.  It can be hard on the kidneys but that is the tradeoff they are working with.  They seem to watching her pretty close. 

Gage is doing great. He is 5½ months into his wait.  My gut feeling, and it is only a feeling, he is getting close to being at the top of the list for his size, blood type, and anti-bodies. But don’t read much into it, it’s just a gut feeling.

Stacy has lobbied for and has finally got a small policy change regarding the HeartWare.  She can now leave Gage at school without her having to sit there.  She can go to other places in the hospital without having to pull Gage out of school.  This is a big deal, because anytime the other kids have a clinic, or biopsy, or blood draw, Gage had to be pulled out.  He has missed a LOT of school over that.  Stacy made some good convincing arguments, well done dear.

About ready to land.  Check in later.

Sunday morning……

Well it all worked.  Michelle Hansen gave me a ride from the airport.  She ‘gently’ suggested I pick up some flowers.  I thought my mere presence was enough.  She smiled and AGAIN suggested flowers. Needless to say, the flowers were a big hit.  Stacy and the kids had NO idea. It was fun to surprise Stacy and the kids AND kick Gage out of MY bed!

Hunter had a great baseball game.  Stacy went to Megan AAU basketball game.

Now we are off to church.

Till next time.

Jason

 Random picture from our living room here in the RMH

Fair well dinner for Glenda, she worked 11 1/2 years and did a great job.  Ashley Goodman has now taken the wheel.

 See ya next week Axelrod.

Hunter had a great baseball game.  They won 15-8.  He had several good hits and scored once. 

 Megan received a science award.  The pictures stick, but we didn't want to forget this honor.

  

Last 2 Days of Tax Season

We are so excited that tax season is almost over.  Not that that means Jason will be returning here real soon.  He just won't have to work so many endless hours and the pressure and stress he is under will be lessened.  He works many LONG hours and even worked through a cold that hit him this past week.  Once tax season is over, he will stay in Oregon and start the irrigating of our mass of land.  Just because tax season is over, doesn't mean his work load is less, it just means it can have a different focus.  We miss him very much, but know he is keeping a home for us to come back to.

It is great to have the kids back and be back in the swing of things.  The busyness of the week helps the time fly by much faster.  Wednesday, Sierra had her repeat biopsy from a month ago when she received a 1B.  I received a call Thursday morning telling me the good news that Sierra got a zero and she wouldn't have to have another biopsy until June.  Then, I received another call later that afternoon and it was completely different news.  The doctor decided to take another look at Sierra's slides and switched it from a 0 to a 1B.  They increased her immunosuppression medications and will repeat the biopsy at the end of May, with clinic next week.  We are very glad that it wasn't any worse, but bummed that it wasn't the 0 they had originally told us. A 1B is not a rating that is doing any damage to her heart, it just means that there are white blood cells lurking around. It is a little frustrating sometimes, with the amount of clinic appointments and biopsies that Sierra has to go to.  Yes, she is still not even a year out from her transplant, but  every appointment she has to miss 1/2 of the school day.  Now, don't get me wrong, her health is first and foremost, of most importance.  I just feel for her, trying to continually make up the days she misses and the priceliness of missing the class lecture time.  Since January she has missed 5 days of school.  Not so bad here and there, but they start adding up and you can see it in her grades of the classes she is missing each one of those 5 days. She is a trooper, and takes it all so well in stride.  I am very proud of her.

Thursday Sierra had a band concert.  It was very enjoyable and she did a great job.  She enjoys playing the saxophone.  Other than that, she is enjoying being a teenager with a license and hanging out with friends and doing homework galore.

Hunter had opening ceremonies for baseball.  His season is half over, but the ceremonies reminded us a lot of the ceremonies at home.  All the teams are announced and march onto the baseball field.  It is always cute at the end when the youngest kids come out in their little baseball uniforms.  Hunter had some great games this week.  They won their game Thursday by quite a bit 15-4.  He had some great hits.  They lost by one on Saturday 9-10 by a really good team.  It was a fun game to watch.  He is enjoying baseball.  On Wednesday nights, he has been invited to practice with the boys 4-5th grade AAU basketball team.  He really enjoys that.  He is realizing he is not THE best, but is working on being humble enough to learn.  It is hard for him with his VERY competitive nature. I think it is a great experience for him.

Megan didn't have any softball games this week.  It was nice to not have to throw those into our schedule, as we were easing back into things after spring break. She will have a couple this week.  She will only have 4 more weeks of softball and Hunter only has 3 of baseball.  I can't believe the seasons have gone so fast.

Lindsey is attending AAU basketball practices on Tuesdays for middle school age girls.  Megan is helping the coaches on those nights.  Lindsey said she is having fun, but is really  excited to start a dance class this Thursday.   She will have her "in between biopsy" clinic and echo on Wednesday.  She hasn't had to be seen since January.  She is doing great.

Gage is doing really well.  His clinic appointments are now every 2 weeks.  He has physcial therapy every 2 weeks and psychology every 2 weeks.  So, it is nice that his appointments are getting less and less.  He still has blood draws every week, but is used to that and does very well.  The only problem, every appointment the kids have during the day, Gage has to miss school.  I have to be with him 24/7, so that if something went wrong with the VAD, I am trained in what to do.  So, when the girls have appointments Gage has to go as well,  This week he will have to miss 2 days of school because of appointments that are not his.  You are probably thinking I have lost my perspective, if I am worrying about a little school.  Which, may be true.  However, I do not want him falling behind academically.  He attends the hospital school where it is 4 hours a day.  A morning session and an afternoon session.  So, it is important that he is there as much as possible to keep up with where he should be.  When this is over, he wants to return to school with his classmates he left.  Luckily, he is a smart kid and keeps up with what he misses.

Thursday we were able to meet Wendy.  Her company held a fund raiser in behalf of our family.  She came to meet us and drop off the funds they raised.  It was very nice to meet her and we are in awe and humbled at the generosity of so many people.  We thank you all everywhere!! Friday we had a very special treat.  We were able to go to San Francisco and meet with our dear friend Molly Smith.  She was the teacher for 3 of our kids.  Lindsey was here the year she was supposed to have her.  It was funny because the kids didn't quite know how to address her.  "Do we call you Molly or  Mrs. Smith?"  It was so fun to visit with her and just hear about events happening back at home.  She is a dear friend and I am so glad we were able to see her. Onto the next week of practices, games and appointments.

Wendy and Gage 

Sierra at her band concert.  A "little" bigger than North Powders.

Molly/Mrs. Smith at the Olive Garden 

Hunter opening ceremonies. 

Day 153, Spring break

Jason here.   Coming at you from Alaska Airlines on my way home to Oregon.  I’m home for the final stretch of tax season.   It has been an exciting week.   I took the kids home for spring break.  They had a great time. We kept it a surprise, so if was fun for them to drop in at school and seminary.  Teachers, friends, cousins and especially grandparents loved seeing them.  They went to school, hung out at friends, played a little baseball, had overnighters at cousins, and a little house / yard work (there is a lot of that, that needs to be done).  Of course, Stacy and Gage Aurelius spent the week at the RMH. He is healthy enough to go to Oregon but there is no way they could tend to him if something were to go wrong.  His biggest risks continue to be internal bleeding / stock from too thin of blood, blood clots from too thick of blood, heart machine malfunction, or just good ole’ heart failure, all of which the Baker hospital would have a tough time addressing.  I know it was tough on Stacy to spend spring break alone with Gage, it was tough on all of us. 

My sister, Garrity and her boy John came up to Oregon to help run the kids around while I was working. Thanks Sis.  Her little 2 year old boy John was thee life of the party.  Our kids loved playing with him.  Friday, we drove to her and Seth’s house in Princeton Oregon.  Then left early Saturday for Calif. 

We had a great experience Saturday night.  The RMH staff asked us to share our story at the annual RMH fund raiser.  It was a high dollar dinner and auction with dancing afterwards.  The event was at the new RMH next door which will open its doors May 30.  Stacy and I shared our story with our kids standing next to us.  We took about 10 minutes and shared some of the challenges we have faced over the last 10 years.  Yes, it was 10 years ago this month when Sierra first got sick. 

After the dinner and program, we took the kids home to the RMH.   Once they were tucked into bed, with meds taken and Gage’s feeding tube running,  Stacy and I returned to the dance.  They had none other than Kool and the Gang there performing.  It reminded me of the good ole’ high school / stake dances in the 80’s when he was singing ‘Cherish the Night’ and ‘Celebration’.  It was quite a show.

Just to clarify, Gage really is doing well.  He is still a status 1a on the waiting list and has been on the list now since November 10^th.  I am still growing the hair out until transplant.  Hair is getting quite curly so Stacy tried to straighten it before the RMH event.  Yes with a straightener.  That did NOT last long.  First of all I don’t like that hot straightener thingy next to my head.  Second, it made me look even older and grayer than I already am.  She and kids a lot of fun with it.   

Now it’s back to work, school and life. Tough leaving the family after only being there for 1 day, but this is where I am needed. 

Till next time

Jason

 Girls after their makeovers.

    After MY makeover (hair straightening???  I think not)

 At the RMH dinner

 Kool and the Gang

 Hayhurst came by for visit while we were in Oregon.  Nice visit with Stacy and Gage.

Stacy took Gage and Wyatt on a long walk while Kade and Stephanie Thomas were with their daughter Tristin in the hospital.   

 Those 2 were pretty funny together, but did a great job on a very long walk.

Day 145 - April 3, 2016

There isn't a lot to report for during the week.  Hunter had a music concert, Megan had a softball game and Lindsey had basketball.  Gage had clinic and he is doing really well.  There was nothing they wanted to change.  He seems to be over whatever flared up the vomiting.  Now it is just a matter of getting his labs back to where they need to be.  Mostly his INR (blood thinning level).  This just means a few more pokes than normal, but he is a trooper and is a pro at blood draws now.

Most excitingly is SPRING BREAK!! We are so excited for our spring break, mostly because we are ready for a little down time.  My brother Bradey and his family came to visit us here in California.  They flew in Thursday and are staying until tomorrow.  It has been so fun having them here with lots of activities to do.  Friday we went to the Tide pools, Saturday rock climbing and San Francisco and took a little rest for today walking the dish.  We have really been having fun, especially the cousins playing together.  Friday morning Hunter and his cousin Mason (who are the same age), were able to get a tour of the police department in Menlo park by our good friend Sgt. Kevin Paugh.  It was very nice of him to take the time to show them around. We took Gage and Korbyn (5) with us and the boys all had a great time especially in the weapons room.  Wish they could stay the whole spring break. We would LOVE to be going home for spring break, but the doctors said Gage could not go.  He has to stay close by especially with his VAD.  We thought about letting the kids go, but there is just too much going on to be able to go home.  Even though, I am sure Jason would love the company at home, as he is headed back to Oregon for another week of tax season,  So, the kids and I have made plans to go to the Monterrey Aquarium and the planetarium in San Francisco.  We are excited to even enjoy some days with just some R & R.

At Megan's softball.  She played 1st base and did well. 

The boys at the police department 

Kevin with the boys. 

At the tide pools.

Yes, Jason's hair is still growing, 

Our rock climbing adventure.  Gage wanted to go very first.  He did a great job and got way up there.  Megan went next and made it to the big nob jutting out.  Sierra after her followed by Lindsey, then Hunter who all made it to the top.  Sierra was pretty proud of herself for going further than Megan. I went as far as Megan (just to maker her feel better) and of course Jason made it all the way to the top. 

Our day in San Francisco. 

Ghiradelli square 

Lombard Street 

Walking the dish.  The boys would run up ahead and wait for everybody else.  "Resting" on the side while we caught up.  

And our wonderful Thomas's are here for biopsy.  So good to see the and cute little Tristen,