On Friday, Donald and I dropped Alexandra off at school and set out on a two hour drive to Spokane with Elisabeth and Lorelai for some medical appointments.
First we went to the ophthalmologist.
Her vision: no better, no worse.
He also concluded that it's getting increasingly more difficult to test her vision because she is gaining a personality.
After her ophthalmology visit we drove to the hospital to meet with her neurologist. We discussed her seizures and spasms and how she has done since starting Sabril 3 months ago. Sadly, we reported that she has taken a turn for the worse.
Together with the neurologist we decided to wean her off the Sabril.
Our last big hope has failed.
So now what?
We wait. Elisabeth should outgrow the spasms no later than the age of 5. That means she could be facing another 2-3 years of this. It seems like a hard trial for our sweet daughter to face, but unfortunately it seems that there is nothing more to be done.
I remember once writing that I have always found a careful balance between acceptance and hope. This is one of those times where we face reality; where we accept that for some reason, Elisabeth's body won't respond to any medication or diet or treatment available. And I won't sit around with a false hope that some miracle medicine is bound to show up. Sometimes, things are just the way they are.....and this is one of those times.
So, she'll keep enduring cluster after cluster. She'll keep showing us how brave she is; how tolerant she is. And like always, we'll be by her side, loving her and comforting her and letting her know that no matter what, it will all be okay.
And it will.
Our view of Spokane as we ate lunch at the hospital cafeteria.
