We're Back!

So we’re back. It was pretty tough for a while. He went from being off meds for seven days to being put on a higher dosage of meds after a week of sleep deprivation (Ritalin and coffee), Benadryl for the itch, and a seizure. When we got him home he was a MESS. He was angry, aggressive, weepy and exhausted. He was tough to watch. We all tried to steer clear of him and just treat him gently for a few days. He did great his first day back at school, and had a really hard time getting up today, his second day. He’s back to normal now, he smiles, laughs, and hugs…he’s a joy.

I talked with Howard Weiner, Lincoln’s surgeon, today. While he’s not pressuring us to do anything, he did suggest that the next course of action should be a Wada test, then grids and strips, then possibly a partial resection with more grids and strips (…or is this the only time we use grids and strips? – as you can see, we have to talk A LOT more), then, finally, the last part of the surgery. My details are sketchy because to be honest, I zoned out after a few minutes into this conversation. It was all too much to process. Thankfully Howard is very accessable, as are our other two doctors. I have to call Dr. Devinsky, our neurologist. In short, we have many more stays at NYU ahead of us.

He did say that, yes, Lincoln could get the use of his left hand back with lots of therapy. This is very encouraging. The OT at the hospital told L that the more work he does now with his left hand, the easier it will be after surgery. This must have made quite an impression on him because after she left he very painstakingly and silently worked on buttoning his shirt (one button). It took him quite a long time but he did it – and it was a very small button too!

Eva, Lincoln’s supportive and loving sister, is now working with a new friend to create a blog about being the siblings of children with epilepsy, who’ve also gone through the epilepsy surgery. Griffin (her new friend) has a twin who had surgery a few years ago with Howard Weiner. Griffin has been a great support for Eva.

Speaking of support, I can’t thank all of the faculty at GCS enough for their support. Coming back on Monday was like walking into a great big hug. I can keep myself together until I see you gals (and some guys). Thanks for always taking such good care of the four of us. And the students…so innocent and honest and caring… I could cry all over again!