...is the trouble thereof! We were hoping to go home this afternoon, but Ava had another seizure, so she's getting bumped up on her new med, and now they've set the bar at 48hrs without seizures before we can go home. We're disappointed of course, and now direct our energy to trying to get things set for the week ahead.
The good news is, Ava's seizures don't seem to hurt her at all. They are more an indication of brain injury than they are causing any brain injury. They aren't the one's you've seen on TV that scare the daylights out of you. They're more like a twitch and occur like a hiccup...with regularity for as long as 7 or 8 minutes. The goal is to get her up to a dose of medication that will allow her to be seizure free at home. That might take a few days. So we wait, and pray for her little brain and body and spirit to have peace.
How are we doing?
Our girls have been singing (sometimes screaming at the top of their lungs) a new song all week from Matthew 6:34: "Do not worry about tomorrow for tomorrow will worry about itself. Each day has enough trouble of its own!"
Seriously? Out of the mouth of babes.
As long as we don't look too far ahead
As long as we don't try to make projections about what this means for Ava and the rest of our family
As long as we remember that God has never failed to provide for us
As long as we accept the day and whatever comes as from his hand, for our good and as an opportunity to see him provide, for his glory
As long as we remember that our lives, are his, to be spent on His priorities
Honestly, unbelievably, amazingly...we're doing fine.
So we take things one day, one moment, at a time.
The girls are happy at home for the afternoon with Ms. Marcia, Matt will hopefully have his latest paper submitted by the end of the day (taking a big load off his shoulders) and I've got some great leads on a consistent helper for our family. While Ava's been here, both Matt and I have had the chance to spend some sweet time with the big girls. I enjoyed a library and park trip yesterday, and he walked the girls down the block to watch the runners in the St. Louis Marathon this morning. Tonight we'll all pile into Ava's room and have a family meal so the girls can see their sister. Probably, Matt will feed them all Dairy Queen blizzards before sending them home for ME to put to bed. Our life is crazy, but it's ours, so we might as well enjoy it!
We are thankful...
*For Elizabeth's school...a source of great stability for her right now
*that Ava is bottle fed...that I've already wrapped up pumping and am not struggling to deal with that in the middle of all this. God knew. More on that in the next post, but let's just say, His timing is perfect.
*for our home, close to this wonderful hospital
*that Matt recognized Ava's first seizure for what it was (go neurologist Daddy!)
*that Matt has enough friends and collegues working on Ava's case to field a chess team! As a result we are getting great care...including breakfast, hand-delivered two mornings in a row!
*once again for friends who the girls adore to step in to care for them
*for His grace, which inexplicably makes it possible for us to live and breathe and have joy moment by moment.