Far From Normal

Life right now is so far from normal.

We are still waiting on the critical liver biopsy results. After my rant on Monday, we are at least parallel pathing other bone marrow pre-tests to keep things moving.

Doug and I are rotating shifts at the hospital - Doug takes the nights, and I take the days. We are on extreme germ alert as Jenson needs to be virus free prior to a bone marrow transplant.

My retired parents are full-time parents again. Sydney is living with them and has been for the past 2 weeks recovering from RSV and now a stomach bug. They also got RSV over the holidays...not the ideal Christmas gift. In addition, Doug and I have to keep our distance so we don't get sick and pass any virus to Jenson. Watching Sydney open Christmas gifts from the front porch was not my vision of the perfect Christmas.

Sydney has to be virus free when she gives her bone marrow, so that means no school until after the procedure. My parents are also on germ lockdown to make sure no one in their house catches anything else.

Hopefully they will all be well in a few more days so we can spend time with them. I just want to hug my little girl and have my mommy and daddy hug me.

Jenson is now on pain medicine 5x the strength of morphine and quantities strong enough to knock out most adults. He continues to have intense pain spikes every 8-12 hours that take 3-4 hours to get until control. Poor little guy!

Jenson is also missing his sister really bad. He melted down bawling a couple days ago when he heard her voice on the phone. "I miss Sydney, I really miss her. I love you Sydney" he kept saying. Once we got off the phone Jenson kept repeating, "Sydney sick and I hurting. Sydney sick and I hurting." That pretty much sums it up.

I never imagined this would be our life.

BREAKING NEWS: Finally, one piece of good news. We have the final insurance approval for the transplant! Now we need a negative liver biopsy result for fibrosis, and hopefully the journey to healing and normal can begin.

Kristin