Riding the Wave

The seizure freedom continues...

Now for what we've all been waiting for--- drum roll please---we finally got to talk about brain surgery with Dr. Thiele! It looks like, preliminarily, he is a candidate (assuming the seizures return or his development regresses). The next step will be for them to "present" Oliver in 2 weeks to their "surgery conference." The surgery conference is when all the specialists get together and discuss the case and make a final decision. After the conference, Dr.Thiele will call us and discuss their final decision. She said she if they say "yes" and we do too, surgery could probably happen sometime in June. Wow. She also said we would need to be in the area for about 1-2 weeks. She did want us to check that with the neurosurgeon.

Since we don't know if the seizures will return, we're still moving forward with surgery planning. Based on Oliver's track record the seizures will eventually return. So it makes us feel really great to have a plan for if/when that happens! As Dr. Thiele said "you just have to ride the wave for right now." Whew, I have to admit I am tired of riding the wave, but that is the nature of Tuberous Sclerosis. It is often referred to as the Maybe Disease.

Overall Dr.T was really encouraged by the way Oliver's EEG looked. She does not want to lower his medications too much because he is doing so well right now. What we don't want to do is trigger seizures, then trigger developmental regression.  She said "data (i.e.EEG and MRI) from Duke was good enough to present at our epilepsy surgery conference, so let's not worry so much if we don't get any seizure activity while you are here." That is a load off and seems prudent to us. No need to send him into a seizure spiral if it isn't 100% necessary.

We're looking forward to meeting the neurosurgeon later today. I keep thinking she has walked by. I feel a bit like a stalker but, that is the lady who might cut open my baby's skull. I'm anxious to see her and get a feel for her. I hope I like her as much as Dr. Thiele but, that is doubtful!

I hope all this makes some sense? I've tried to edit and re-write this a few times to make it concise. I don't want to leave out any big pieces of info yet, I don't want to bore you to death with medical jargon :)

Lastly, we have been well cared for today by some wonderful Bostonians. Oliver loved dancing with Mrs. Carolyn and her daughter Evalina (2 1/2 years old) while we talked with the doctor. They were seriously having an all out dance party in there. I can't tell you how helpful it is to be able to step outside of the room and fully listen to the doctor. There is so much to process in those few minutes. A great deal of life altering information is shared in those moments. I was worried about this particular detail- having someone to watch Oliver in the room while we stepped out with the doctor. I mean how cool is that? Even that little detail has been taken care of every time we needed it. God knew and He provided!

This afternoon the Kaplans came by to help. They are the parents of one my grad school friends, Karen (shout out to UNCW, Social Work Department). All through graduate school I heard stories about what cool parents they were. They taught their children how to really love others and they proved it with their lives. I never thought I'd get to know them in person but, here they are! They are so wonderful and Oliver has already taken a liking to both of them. While they've been here we've been able to get out for lunch and a browsing trip at Whole Foods.  It was nice to get out and feel the cold air on our faces (and yes it is cold here). Oliver is loving the visits and we are too. What a blessing to have these special people in our lives!