Friday, November 25, 2011


Harper during a video EEG in September

We made the decision that Harper would have brain surgery in September. After months of tests, doctors appointments, medications and many many seizures, she's scheduled to have a right hemispherotomy on December 7.

I'm an impatient person. I prefer immediate results. The waiting, the testing, and the discussion leading up to this surgery has been excruciating.

We had our first video EEG in May to confirm that Harper was having seizures.  In the following months, we have been on a long list of medications including Trileptal, Keppra, Zonegran, Topamax and now Vimpat.  None have really made a dent in any of Harper's seizures.  She still has 25-30 a day. Her developmental progress has come to a virtual standstill.  All the therapies we participate in feel like running in quicksand.

In September, our neurologist suggested that because almost all of Harper's seizure activity seems to be coming from her right brain, that she could be a good candidate for brain surgery to reduce or eliminate the seizures.  The concept of surgery is that once the doctors can isolate exactly where in the brain her seizures are originating, they remove the offending tissue and hope that this stops the seizures in their tracks.  There are many different types of epilepsy surgery depending on what kind of seizures and where they are coming from.

We talked about it and Dave and I agreed that we could spend many more months cycling through tons of medications, hoping one would work, losing time during which she could be developing, or take the surgical approach, hopefully giving her some seizure relief and affording her the opportunity to reach her full potential.  It was a shitty decision to have to make - send your one year old child into brain surgery or watch her seize all day - but the choice seemed clear.

Mommy and Harper at the Birmingham airport

Of course, before we could schedule surgery, we had to perform more tests.  Another video EEG and another MRI in September showed seizure activity on the right but it wasn't as cut and dry as the doctors had originally thought.  Of course, we were sent for more tests, this time to Birmingham, AL for a magnetoencephalography. We had to wait a couple weeks for the insurance to approve the test and another several weeks after that to schedule it.  We ended up in Alabama on Halloween with Harper in the huge MEG machine, having her seizures recorded.

Harper and the MEG

We've been to Dallas to get a second opinion.  We've been to a Developmental Psychologist to have Harper's developmental progress assessed. We are going to see a Rehab Physician to determine what therapy Harper should have after surgery.  All the while, we've been keeping up with physical therapy, occupational therapy, speech therapy, orientation and mobility and vision instruction.

Finally, last week, a panel of neurosurgeons, neurologists, EEG technicians, neuropsychologists and other professionals met to discuss Harper's case, ultimately determining that a hemispherotomy was the best course of action given her situation. Basically, the right side of her brain is so malformed after her prenatal stroke, that it wouldn't be prudent to spend time picking and choosing what abnormal tissue to remove.  It makes more sense to disconnect the whole hemisphere and let the left side take over.

We know there is a long road ahead.  She will come out of surgery with hemiparesis (weakness) on her left side.  It will take her a couple of months to even get back to functioning at the level she is now.  She will never have fine motor control in her left hand.  She will lose all peripheral vision in her left eye. She will probably walk with a bit of a limp. Therapy will continue at an even more aggressive rate than we are currently maintaining.  There is a 50% chance that she will start to have seizures originating in her left brain.

But she could walk!
She could talk!
She has a 50% chance of being seizure free!

This is considered a pretty radical surgery.  To us, it isn't radical at all to hope that our little girl could come out of it with half of a brain but a whole seizure free life ahead of her.

Harper Jo, November 2011

I'll be posting more as the surgery nears and plan to update the blog with progress reports once we get into the hospital.  We will likely be there for a week.  Positive thoughts, prayers, and visitors are welcome!