Sophie Update 8/13/10

Yesterday we had a meeting with Sophie's neurologist and neonatologist to discuss the plan of action regarding her seizures. We outlined Plan A, B & C which relieved a lot of anxiety for Mike and I. Plan A was to max out the dosage of two of her current medications and leave the third the same and see how the next 24 hours went. She reached 48 hours being seizure free early this morning, but had a very long one at about noon today while I was there which takes us to Plan B. Plan B is to back off slowly on two of the medications and add in the 6-day dose of a new medication, Topamax. They are doing that this afternoon and should be able to tell if it is working by early next week. If it works then she'll be there through the week to finish the 6 day dose and I guess would be discharged next weekend. If it doesn't work we go to Plan C which is to transfer her to Children's Hospital in DC to start evaluating her as a candidate for surgery. It would be a 1-2 week evaluation process where they would monitor her and back off on some medications to induce controlled seizures to see if they can isolate the source of the seizures. If they can trace them to one or two tumors then she would be a candidate for surgery to remove them. If they find that the seizures are coming from more than two tumors they most likely won't operate...and we haven't asked what Plan D would be. We'll deal with that if we get to that point.

So now we have a course of action where as before we didn't know how long she could be at Fairfax. Now we know that if the Topamax works, she could come home possibly next weekend and if not then she'll be taken to Children's. While surgery is not our first choice (or the doctors') to deal with the seizures we are seeing after two weeks that the medications are not working so far and are hopeful that if she becomes a candidate for surgery that removing some of the tumors could be life-changing for her and us in a positive way.

Please continue praying for Sophie, our family, and the doctors that they be guided in the right direction regarding her care. This is all in God's hands and I believe that He is leading us down the path we are supposed to be on. Whether it be medication or surgery or whatever comes after, all we can do is be the best parents and advocates for Sophie that we can.