Monday, November 11, 2013

Going Off Grid

Julia starts steroid treatment on Sunday for her uncontrolled sleep seizures.

The steroids lower her immune system, thus we will be going "off grid."  Not that our grid was that big to begin with, we don't do a ton, but still - what we do do (other than posting things online) is being put on pause. This realization hit me last night during my second bowl of "I"m feeling depressed so I can justify this" ice cream (delicious!).

We did this 5 years ago when we used steroids (ACTH) for the seizures Jules was having back then (Infantile Spasms) - we quarantined ourselves for two weeks. It was cozy, we had a thanksgiving dinner with just our tiny family of three, we kept her safe, the steroids worked, she got better.

This time it is for six months.

Six months of no Sunday school, no music class, no therapy, no outings, no visiting friends. Six months of semi-quarantine in the hopes that this time a different steroid (Predinsolone)will work for a different kind of seizure (ESES) and our girl will get better.

In the course of six months a lot will happen.  Holiday visitors will come and go, babies will be born, shows will be starred in, vacations taken...

And we will be here, in as safe and cozy of a bubble as we can possibly create, praying that 93% drops to 90%, then 85%, down to 80%, maybe even 70%, do we dare hope for 65%?  Yes, we do dare hope, we always hope.