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.