June 2, 2017

Jason here.  

I am long overdue for an update.  Let’s jump right to the good news. Gage had a biopsy on Wednesday, and he got a big FAT ZERO, with excellent heart pressures (less than 5).  All good stuff!!  They also turned down his lasix (which helps him pee) because his kidneys are improving.  So we are happy about that.  It has now been 2 months, minus 2 days, since his transplant.  The big question we all want to know is when will he get to go home.  Stacy and I are always cookin' up scemes and proposals for the doctors to consider.  Bottom line is they want him close because of his past history of heart rejection, kidney failure and seizures (good grief, how silly).  We think we can manage his care from Oregon and continue to make weekly trips to Calif as needed. We proved we can get him back in 4 hours sooooo.…we want to go home.  The zero biopsy sure helps our case, just have to see.  Of course, Gage’s health is first priority!!

One of the many reasons we are pushing to go home is Stacy’s niece, Brindee, is getting married in Logan Utah, next weekend with a Merrill family reunion afterwards.  It would be really nice if Stacy could make it there to see her siblings and family.  Again, we will just have to see.   

School finished up this week in Calif.  Sierra takes the SAT this Saturday.  She has worked hard studying for it and has even received some tutoring.  Hope it goes well for her.   Megan finishes on Tuesday in North Powder.  So the summer is here!!  Did I say it would be really nice if we could ALL be home for summer?  Just saying J.

Today after my flight to Calif, I have an echo on myself.  Stacy had her echo a few days ago.  Because 3 of the 5 have the disease, they are still monitoring Stacy and I and looking for any flaggers or irregularities.  We have had these tests before and I am guessing we be just fine.  Have to see. 

Later today, or maybe tomorrow, Gage has an appointment to see his old heart.  We are hoping the HeartWare is still attached, or at least parts of it. Stand by for some interesting pictures.

  

We are especially excited with the thought of all being together in our home and NOT sleeping in the same room.  I don’t care if the kids want to sleep on the floor, it will NOT be in my room!!  After 2+ years away, our home could use a woman’s touch.  I’m trying, but it kinda has that guy’s apartment feel to it. I know Megan would like a home cooked meal from her mother, not that there is anything wrong with cold cereal, eggs and toast (with vegemite..yum), baked potatoes, or mac & cheese mixed with elk burger. 

That will do for now….  Hope to check in soon from Oregon.

Jason

 Gage's first time in the water!!

If you have ever pressure washed a baler, you will understand....

 Hospital prom.

 Megan's district track,

Now it's Stacy's turn.....

Stacy here.
I apologize for the late update, but our last week of school was pretty crazy.  We had a wonderful Memorial Day weekend.  We started off Saturday morning by decorating graves at the Golden Gate Memorial Cemetery along with hundreds of other scouts and their families.  There are over 144,000 of our Nations veterans laid to rest.  We had the privilege of placing American flags at the head stones.  The experience enhanced our appreciation of each fallen soldier, as we read each name while planting the flag in the ground.  Trying to imagine what they must have been like and where they served. This really set the tone for the weekend.  I wish we could start every Memorial Day off like this.  Such a great experience for the kids.  After that, we were able to go spend some time with our dear friends, the Thornton's.  So fun to watch Ben play wheelchair basketball.  He is such an awesome athlete.  It was so fun to watch him.  Lindsey, Hunter and Gage joined in the game as well.  Hunter started realizing how hard it is to shoot a basketball from a wheel chair.  Gage thought it was the funnest game of bumper cars he had ever played.  We ended the day with a fun treat at Fenton's Creamery.  Very delicious!  A perfectly enjoyable day.

Sunday we had dinner at our friends the McQuinn's.  They are very wonderful people.  The boys watched Rogue 1 and the girls watch the wonderful Audrey Hepburn in Funny Face.  I forgot how much I enjoy Audrey Hepburn movies.  Very fun and relaxing evening.  Monday we took Gage's friend Yonathan, my kids and Sierra's friends, Nori, Theo, and Erikson to the new Pirates of the Caribbean movie Dead Men Tell No Tales.  Gage and his buddy Yonathan had been talking about this movie for weeks.  So, we decided to take everyone and make a day of it.  It was a really great movie.  The only thing that could have made the weekend perfect, was if Jason and Megan could have been with us.  We are really missing being together as a whole family.

Wednesday, Gage had his 6th biopsy.  So far, he has had 0,0, 3A (yuck), 1A, 1A.  This week, he received a..............ZERO! We are very excited about these results.  He has been doing so well.  His diuretics (make you pee pill) has turned down from 40 twice a day to now only 20mg once a day.  His kidneys are improving and they are starting to pull back some of the extra support of meds they gave him from his rejection episode.  He is definitely heading in the right direction and we couldn't be happier. June 14th is his next biopsy and he will be doing it without anesthesia.  Not sure if he is ready for it, but he will have to be.  Sierra will have one the same day and I physically can't be 2 places at the same time.  Ready or not, here he goes. The first few times will be scary, but then he will know what is happening and it will get better.

Today we are in clinic with Sierra.  She has been having these 1B rejection episodes.  No that 1B is horrible, it just means the white blood cells are looking more "plump" like they are ready to attack the heart.  She will repeat her biopsy Wednesday the 14th of June.  Like I have said in the past,  Sierra is our "wild card" you never know what she is going to throw in the mix of things.  This check up was going to be an echo and then visit with the doctors.  However,  the last couple of days, she has been complaining of chest pain.  Pain that feels like a side ache only over the left side of her chest.  So, today they will add on extra testing, such as, an EKG and probably a heart monitor that she will wear around.  Who knows if it is anything to worry about, but leave it to her to keep it interesting.

Sierra, Lindsey, Hunter and Gage had their last day of school yesterday.  Hunter had his promotion ceremony.  So proud of him and how he tries to stay positive with a chaotic life.  No, he isn't the sick one, but sometimes that makes it the hardest for him.  He feels left out a LOT.  Not to mention trying to find where he fits in in life.  It was great to attend his ceremony and celebrate 1/2 of his elementary years completed at Nixon.  What a great school.

Megan's last day is Tuesday the 6th.  We are still trying to figure out who will go where and when.  Stay tuned for final plans as the suburban pulls out Sunday morning.  Which gives us 2 days to get plans finalized and figure out what is going on with Sierra.

 We went for a walk to the cactus gardens at Stanford and found a heart shaped prickly pear.

The new thing is playing a movie on the projector as the bed is going down the hall.  What will they think of  next? 

 Hunter has some really great friends he made at Nixon.

 Gage's buddies on the last day of school.

 Nothing like finishing school with ice cream and your buddies.

Rejected

Today was a really fun day at Gage and Hunter's school.  They had "field day."  The whole school participates.  They are divided into 3 different colors and  by grades.  There are 11 different stations that have all kinds of activities.  Everything from dancing station to obstacle course to snack station.   It was the best physical therapy Gage has had.  His legs were pretty tired by the last station.  Mrs. B (Gage's teacher) and I even participated and became a little competitive.  She is a pretty fast lady! After school, Gage had the last baseball game of his season.  I'm so glad he was able to attend it.  As the school year is winding down, our sports and extracurricular activities are winding down as well.

Which brings me to my "rejected" topic.  Today I received a call from our nurse practitioner.  She told me that they were going to really slowly wean Gage off of his prednisone (steroids).  Usually they do this rather quickly, where they are on very low doses at 6 months.  With Gage it will take until 9 months, possibly even longer (yeah for the eating, bummer for the side effects).  She also told me that the doctors had met and none of them felt good about Gage leaving at his 2 month mark.  With his severe rejection and kidney failure, they want him a lot more stable before going home.  So, we will start our 3rd summer in a row here in California.  Hoping it may only be a couple weeks longer than when we had hoped to leave.

I tried really hard not to get my hopes up at the thought of going home early, knowing that the idea could easily be turned down.  BUT, I couldn't help it.  Just being home all of us together under our own roof was too much of a good dream.  So, I ended up being really disappointed when we were told what the doctors had decided.  Jason is really busy at the office and ranch.  Thank you so much Jeff and Josh for coming and helping him out.  Deeply appreciated. Not to mention, our 20th anniversary that will be spent, yet again, in different states.  As well as the question of what to do with the kids.  So much work to be done at home on the ranch, yet, Jason can't be there to "encourage" them all day.  Do they stay here in California with me until we can go home, do we bring Megan back to be with us in California, do we send them home?  Decisions we were really hoping we wouldn't have to make, but as always, we will work through them.

Hunter at the dance station 

Swimming at Last

We had a very enjoyable and busy weekend.  Friday night started with the annual hospital prom.  This is our 3rd prom in a row that we have been able to attend.  Each one we look forward to.  This years theme was "Western." Which just happens to be right up our alley.  Jason brought back from Oregon some of our western clothes, such as; boots, chaps, spurs, bandanas, hats and vests.  The kids were really excited.  For those who have never experienced the hospital prom, it is quite a special night.  The  hospital school staff start planning this at the very beginning of the school year.  They put A LOT of time and effort into making this a great night for kids in the hospital.

This year was another success! They had booths for games, prizes, face painting, "Larry the Lasso" cowboy, 5-6 players from the 49ers, a DJ for dancing, food and Black Jack tables.  There was something for everyone.  Gage spent most of his time at the food table or the drinks.  There were some of his nurse practitioners there and I gently explained that there was no way I was going to keep track of his sodium and fluid restriction that night.  He was constantly eating or drinking.  Hunter enjoyed the dancing aspect after a few games.  Lindsey enjoyed socializing a little with her good friend Kirtana, then worked up the dance floor as well.  Sierra was Gage's date, so she followed him around to the games he played, then went to the dance floor to bust some moves as well.  Jason and I walked around and talked with a lot of the families we have met over the years at hospital school or through our stays at the hospital.  It is always so great to see them and catch up on how their children are doing.  It was such a nice evening.  I even found a moment to take in, 4 of my 5 children, laughing and having a good time on the dance floor together.  Oh how we missed Megan!

Saturday, Gage was able to swim for the first time in almost 2 years.  He was really nervous at first. He felt like he had forgotten how to swim.  Once he was in the pool he relaxed and had a great time.  His baseball team had their end of season party, so he was able to swim there.  Then we were able to go to our dear friends, the Van Elderen's, where we stayed last summer.  Gage finally got to swim in their pool.  While on the VAD, he could never go in further than his knees.  It was so nice to see Dan and Judi and catch up.  Such wonderfully amazing people!

Jason flew back to Oregon Saturday night.  The stress of ALL his work is mounting higher.  With the warm weather at home, it is time to get the water going on our grassy fields.  Office work that is left over from a tax season interrupted by a transplant and many other tasks that have been neglected. Oregon is where he needs to be right now.

School is winding down here in California.  The kids have 7 more days of school (not that their counting, but Lindsey could tell you to the hour).  Which brings us to our biggest question, "Now what?"  Do we send everyone home to Oregon when school gets out and just Gage and I stay? Do we bring Megan here and stay for the last month together in California? Or my favorite, do we ask to go home early and spend the whole summer together as a family? Wednesday, Gage has clinic, and we are now ready to present them with the question of going home early.  Gage will have a biopsy on the 31st of May, if that is a 1A or a Zero, I will have to have a pretty good reason why we can't go home.  I feel we have put our time in and we aren't new at this.  We will be returning 2 weeks later for another biopsy, but at least we could be in our home and together as a family.  Wish us luck, as we have a busy summer planned, in pencil, on the calendar.