Allie is having seizures just about every two days. She had one today. She had one yesterday. She had two on Sunday.
About three years ago, Allie was having seizures about once a month and that terrified us. Our doctors took it very seriously, too, and started her on medicines to eliminate the seizures. Three years later, her seizures have increased exponentially and we’ve tried everything we can think of to manage them.
We’ve been in the hospital on several occasions to study the brain and monitor the seizures with a video electroencephalogram (EEG). Each visit we have to stay longer. Next week, we’ll be at Miami Children’s hospital from Monday through Friday. Allie will go through a battery of tests, have her seizures monitored and recorded, and also have an MRI. The intent is to get a good work up of what kind of neurological behavior is associated with the seizures she’s having.
We covet your prayers. Since Allie’s seizures have been so difficult to manage with meds, her neurologist is considering inserting a shunt into her neck that gives off an electric pulse to negate her seizures before they hit. We really don’t want Allie to have to have and electronic device surgically implanted. Allie has had a number of other surgeries and has been very susceptible to infections. One time a three day hospital visit turned into a nine day stay due to infection.
There will be a number of doctors involved in this testing so having more than one opinion available makes us happy. But we are not looking forward to our stay. We’ve been in the hospital for overnight stints three times in the last year and they are incredibly disruptive and intrusive to our family routine. Quite frankly, we often leave the hospital frustrated and defeated because we don’t ever learn as much as we hope. We’re praying this time will be different. Again, please pray with us.
I’ll post what I can here, on Facebook, Twitter and Instagram while we are there. We look forward to your online involvement and interaction with us during our stay at Miami Children’s Hospital.