Thursday, May 25, 2017

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 




5 comments:

The Reading Nook said...

I'm glad Gage had such a good day! I'm sorry that the doctors won't allow him to go back to Oregon sooner.*hugs*

Anonymous said...

He's come so far. We've been impressed with your family! Go Gage!

Nita said...

I was so heartbroken for you to hear of the struggles your family has endured with dilated cardiomyopathy. But so happy for you that your children are living and making it through this devastating illness.

We have two daughters, one who just died of dilated cardiomyopathy at 4 months old. The etiology of her DC appears to have been viral myocarditis but I read that your children all have the biomarkers for DC. While a genetic cardiomyopathy panel came back negative on our dear Callista, I wonder if you would be willing to share what biomarkers your children have, so that we might test our living daughter for the same?

Karen W said...

I'm so sorry you cannot go home. But really glad Gage is doing much better. It will hopefully go by really quick, you've spent such a long time here in California this should be fast. Prayers and hugs as always

Bina said...

Bummer! So sorry your wish didn't come true, whah!
LOVE the pic of you and Gage, so pretty both of you. ;-)