Surgery?

I wanted to get y'all in the loop. Lots has been going on with us in the last few days- mainly our decision about the VNS has shifted a bit. The more we've thought about brain surgery, the more we are interested in it. 30-50% of kids with successful surgery are seizure FREE for a lifetime. That is amazing and much better than the VNS stats (50-75% seizure reduction, but not freedom). It seems to us that if Oliver isn't a candidate for brain surgery then we would do the VNS. So...I've been spending hours figuring out all the beginning details of what this might mean for us.

Who is the best neurosurgeon in the country? Who does the most TSC brain resection surgeries each year? Do they have cutting-edge imaging techniques like the PET scan and the MEG? Do they take our insurance (that is a BIG) one!? How many trips will we have to make 1,2,3? How soon could they see us?

Right now I am waiting to hear from Boston as to their recommendations for neurosurgeons. The "rockstar" of TSC resection surgery is Dr.Weiner at NYU. Click here to see the kind of surgery Oliver might have (IF he is a surgery candidate).

Dr. Weiner's first consult appointment is in early June and Dr. Chugani (Detroit) is June 15th. That isn't as bad as I thought but, it is easy to see how it could take 6 months or longer to actually do the surgery.

Sadly, Oliver just isn't talking- maybe one or two words a day. Big sigh. It stinks! You would think with the decrease in meds, the language skills would be returning but, they aren't. His seizures are averaging 6-10 per day so we are VERY motivated to get some type of surgery intervention ASAP. Time is ticking away.

While we wait for surgery or the VNS we are going to try the 10th AED (Anti-Epileptic Drug), Depakote, within the next few days. Sigh. That will make 8 drugs Oliver will be on each day. Yikes!

I want to end on a positive note- I always do! It just isn't coming out right....uuggghh. Basically I just want to say that although this is hard, we really aren't despairing. We know that even if this doesn't turn out how we want, there is still hope! We know that even though we are hard pressed we are not destroyed. We can bear the weight of this but, only with God's help. So pray for us, that we would continue to hope and be encouraged. That we would find new strength for the marathon ahead of us! Love to you all!