Rose is Up and Out
Rose has finally reached her target dose of the new medication. This transition has taken 19 months due to complications.
She is slowly emerging from the fog. We are so happy to see glimpses of our old Rose.
We went for a hike to Daffodil Hill last week. It felt good to be out and about with my young explorer.
We are grateful and hopeful.
Mama Flower
Depending on a New Dose
We are going up on the latest drug twice in the coming weeks. We hope the higher doses stop this cluster and resets the seizure clock.
I am sure you have been in this same situation.
Holding our breath. Keeping our fingers crossed. Waiting…hoping…
The fear is here.
Waiting for the sounds of falls is an old habit I have not missed.
We need Rose to be safe. We need to relax.
That’s where we are.
MAMA/ FLOWER
Do Not Postpone Your Life
Will this ever be over?
I have asked for thirty years.
It is best not to count on a cure.
I hope better treatments and a cure comes,
but we cannot wait for that.
We are living now. Trying new drugs.
Transitioning and seizing.
No longer driving.
Time is passing.
Our lives are going forward with epilepsy.
Waiting for a cure is waisting valuable time.
Do not postpone your life.
Seizure Mama/ Flower
Other Epilepsy Blogs
Hard Truths
Approaching the Holidays
It is time to prepare for extra excitement, less sleep and unfamiliar foods.
Be mindful of how activities affect well- being.
Our rules are NO RED FOOD and no late nights.
Not many activities are worth increasing a risk of a seizure.
Rose did have her first seizure since the stroke in September 2022. This means that the PFO was not to blame. We are disappointed but taking it in stride.
I will be Rose’s uber/taxi again. We hope she will start her career in a city near a college so that transportation will not be an issue anymore.
I will include a few links of advice for surviving the holidays that I have shared in the past.
HAPPY HOLIDAYS from Seizure Mama and Rose
Rose Makes it through Covid
We are late into the medication transitions of lowering dosages of Keppra and Onfi and going up on XCOPRI.
No seizures.
Rose has been doing Physical Therapy to regain strength after the stroke she experienced last September.
No seizures.
Rose has had Covid this week and is recovering nicely.
No seizures.
HOORAY!
Seizure Mama and Rose 