We met with Meara's neurologist on Wednesday to discuss the results of the spect scans that were completed while Meara was in the hospital last week. She said that the spect scan was a good one and provided the information they needed. The area of the brain that is still affected by the seizures is where her motor strip is. The team of epileptologists determined that if that part of the brain was removed by resection (a second surgery) that she would lose her entire motor function on the left side. Meaning shoulder, arm, face, leg, and hand. The hand would be permanently paralyzed. The other areas could see improved function from years of physical therapy but she would always walk/run with a gait no matter what. She would also permanently lose her peripheral vision.
The success rate for this surgery is the same as last time: 60-70% chance of seizure control.
If we do the surgery we instantly paralyze her on one side. If we don't do the surgery over time the seizures could cause damage to that part of the brain and cause weakness on that side of the body and motor function anyway.
The "formal" conference of her case (involving epileptologists, neurosurgery, etc.) takes place next week but they are likely to come to the same conclusion as the team of epileptologists.
Megan and I have decided that we aren't going to put Meara through a second surgery. At this point her present quality of life versus the deficits that she would incur don't add up to having this surgery.
The "concrete" doesn't get poured on her brain until about ten years old. That means if we can somehow find a way to control her seizures before she turns ten then we can have some confidence that her quality of life will continue as it is. Maybe from a new med, maybe from a new treatment that hasn't yet been found.
I asked Meara's neurologist if she would have the surgery done if it were her own kids and she said no. She said that watching Meara be so active signals that it isn't the time to be making that decision based on the type of seizures and her current quality of life. She said that we should keep exploring other options and think of a second surgery as a last resort if her quality of life diminishes at some point and the surgery proves to improve quality of life versus taking away from it.
We believe that one day Meara will be seizure free. We believe that she is perfect and that everything happens for a reason. We also believe that through supporting one another and building community we can provide a better quality of life not only to each individual child who is diagnosed with epilepsy but also for the parents and family members who care and love their child and just want what any parent wants: a happy child who will live a long and fulfilled life. What we've learned is that every child is different and every parent has to make decisions based on their child's specific needs when it comes to controlling the seizures and improving quality of life. We have such a deep respect and love for these families and we are humbled by their courage to make the right decisions for their child.
Thank you for supporting us through all of this. Megan and I are so grateful for the prayers, positive thoughts, messages, and affirmation that you have sent our way.
Love,
Aaron & Megan
