We're here...and an Elsie update

What a crazy two weeks this has been.  The dust is finally settling in our apartment in Ohio.  We’ve had several long and tiring days of unpacking, cleaning and lots of shopping to create a functional home here.  We’re getting there.  Some clothes are out of suitcases, but Emma is still sleeping on a blow-up mattress. 

Our two days of driving to get to Ohio were not so fun.  The second day, July 2^nd, was 12+ hours and I decided I’d rather sit between the two car seats than be turned around the whole time, so Mark drove it all.  What a champ!  July 1^st we left my parents house and stopped in Orlando for a rather long and important doctor’s appointment.  Elsie’s specialist gave us the summary report of all they’ve found with all the testing they’ve done, and his recommendation.  They know there is abnormal tissue on the left side of her brain.  It is causing the seizures and influencing her development.  He said that without surgery it is unlikely she will be a fully functioning adult.  The good news is that the new medication Elsie began when we left the hospital is working right now.  (Thank God she hasn’t had one seizure since we left the hospital.)  However because the other three medicines have failed, there is a less than 1% chance that this medicine will be a long-term solution.  So, surgery is necessary. 

That day we also got more details about what surgery will look like.  It’s actually two surgeries.  Right now they have a clearer picture of where the abnormal tissue is.  However because they don’t want to take out too much tissue and they don’t want to take out too little, they have to be precise.  So the first surgery is to place electrodes directly on her brain.  Then they close her skull, with wires coming out, and wait for a seizure.  If one seizure confirms what they already know and gives them the information they need, they do the next surgery to remove the tissue.  If it’s conflicting or inconclusive, they wait for another seizure.  After the second surgery she will be on the road to recovery, but wow, what it will take to get there. 

In between this news and the madness of settling into our apartment we stopped for a few days at Nana and Papa’s in central Ohio.  Large shade trees, little humidity and beautiful days meant lots of backyard playtime.  Transition is hard on all of us, but our days there were fun and relaxing.  

Thanks for keeping our family in your prayers!