Decisions, decisions

In the July 13^th post we told you that Elsie’s doctor recommended surgery and explained a little about what that would look like.  Well, we’ve been seeing doctors up here trying to get that recommendation confirmed.  It hasn’t been quite that easy.  A doctor in Cleveland told us that he would wait.  He would try more medicines and then see if surgery might be necessary.  We tried to see a doctor in Michigan and couldn’t get in until early next year.  Not helpful.  And today, we finally saw another doctor here in Toledo. 

We had been moving forward with plans to do the surgery in Orlando on October 1^st.  But we haven’t felt confirmed in that decision until today.  This neurologist spent about two hours with us.  After seeking to understand Elsie’s case, he explained the issues surrounding her epilepsy and the differing ideologies the other doctors are coming from.  It was extremely helpful.  He basically explained that on one hand are doctors who are seeking to control and manage the seizures, and doing surgery when it’s really clear and absolutely necessary.  These doctors focus on the epilepsy.  On the other hand are doctors who, yes want to control seizures, but also highly value development.  They see cases where significant developmental strides occur after surgery and therefore are more aggressive in recommending surgery. 

Because Elsie has been seizure free since June 13^th and the current medication is working, both of these ideologies fit her case.  It’s not clear that surgery right now is absolutely necessary.  But it’s also highly probable that it will eventually become necessary.  Because of the brain’s plasticity, surgery on the brain is better at younger ages.  And we want Elsie to have the best chance she can to grow and develop.  Therefore we feel comfortable being more aggressive in moving forward with surgery now.

So the girls and I fly to Orlando on September 22, we meet with the surgeon the next day and then surgery is scheduled for October 1st.  Almost exactly a year after Emma had her surgery in the same hospital.  Here we go again...