Emani Journey left hemisphectomy

06/26/2018

Emani is seizure free and no meds, we are in memory therapy for the brain, she is wearing a hand brace on her right side for the right sided weakness. We are told that she will always need therapy, and the goal is to continue her education at a community college.
Two years, and 5 months since the surgery, she lost her pherphetial vision in the right eye, and has a prism for her eye classes only on the right side.
The surgery gives you gains, and losses, her sensory of feel is gone on the right side, and her hearing is very sensitive now. The weather sometimes effects her mood.
We are now seeing a adult neurologist that deals with memory loss. The last EEG shows activity in the brain, and I'm told that will always be because of all the seizures.
One day at a time.

06/07/2018

Hi, 2 years and counting off meds sensory is gone, right side peripheral vision gone short term memory contionus therapy, now we are in therapy for memory lost, therapist said that Emani will need therapy for awhile. Two handed task is still hard the right sided weakness is forever. Surgery was the best decision that we made since the epilepsy started. June 7th, is another new journey that we are looking forward to, another step to walk.

10/24/2017

After surgery 1 year 9 months we are doing vision therapy right side vision gone, memory lost is everyday, the struggle is real. We are weening off the Keppra, over 5 years now, our neurosurgeon says yes its time to get rid of the medicine, her eptiologist neuroscience doctor says no!!! What do we do? Well we are now doing away with the medicine on our own, 1am dose 1,000 mg, 10pm dose, 14 days now, so far so good, ant thoughts on taking away the medicine slowly, we had a 24 hour video monitoring done, and no seizure activity from the right side that is already weak.
Therapy is ongoing.

08/24/2017

Here for our Neuro Optometrist check-up recommendating vision therapy and management to deal with right field vision loss, she is wearing a prism Len for the right eye.
So sad to think of everything that involves epilepsy patients, life long disabilities.
Therapy should be offered and paid for no matter what. Can half of the patients work? Drive? Complete their college education without knowing how to cope??? How can their dreams be fulfilled without help???

04/02/2017

I Year 2 months ago, left hemi surgery, we just started to ween off of one medicine, no seizures! Noticing little things but thank God no seizures, therapy is over, lost feelings on the right side, she has right sided weakness since birth, she lost her right pherphial vision!
Gains and losses.

08/20/2016

07/28/2016

05/05/2016

VMR 24 hour WBH Children's NeuroScience Center! CHM don't have a NeuroScience Department!
Great news no seizure activity from the right side nothing left on the left side.
Left hemi on 2/19/16
So happy getting use to no seizures, no triggers, she is still on Meds for one more year, I am still looking, taking her rescue Meds everywhere we go...
Happy Thursday everyone!!!