The preparation for the annual update always begins with reflection. I not only begin thinking of the events of the past year, but include the invaluable exercise of reviewing our entire TBI journey as well. The combination reaffirms my daily ritual of trying to maintain perspective. The analysis; every day, of the last 4,749 days, has brought surprises, setbacks, delays, frustrations and triumphs. This past year has included all of those descriptive words!

After my last entry, Corey’s seizure disorder escalated. She had 23 seizures that not only multiplied in frequency, but also in severity. There were two specific severe seizures I truly thought we were going to lose her.

In addition, as if that were not enough, she also had a significant fall in January. Her fall brought us back to Bryn Mawr for re-evaluation for PT, OT, and Cognitive/Speech therapy the end of February. When Corey was initially evaluated, she could not walk more than 90 feet. She was off balance. She could not open her left hand. She could not move her left fingers. She could not remember descriptive words in conversation. She was quiet, easily confused, didn’t initiate conversation, she lost her spontaneous laugh and desire to cook.

These two clinical setbacks were difficult to navigate for multiple reasons.

The seizures added multiple medications trying to stop the convulsions, but directly affected her physical and cognitive functioning throughout her rehab therapy. The ‘delay’ in function, directly affected our advocacy for insurance approvals to keep her in out-patient therapy. This was our battle ground October-May.

In May, the clinical team of neurologists, physiatrists and ‘Dr. Mom’, decided to admit Corey inpatient at the seizure lab at University of Pennsylvania for a week. I was allowed to stay with her in her room. The technicians wired electrodes to her head, studied her 24/7 for seizures, as the doctors weaned her from the four medications that were clearly not regulating the seizures. This was a trying process that required her to be bedridden and/or stationary in a chair; movement caused the data to be skewed. Coincidentally…the iPad also affected the signal to the electrodes! Can you imagine the boredom/entertainment challenges we faced for a full week?! Fortunately, we found the sweet-spot for the iPad across the room so the frequency wouldn’t be interrupted and Corey could enjoy 1-2 movies a day (and I could get a song and dance break!)  

The data collected revealed that as the medication was decreased, the seizure ‘charges’ increased. It identified where in the brain the charges were firing and how frequently. The study results; the ‘charges’ fire 24 hours a day with varied strength, mostly within the right side of the brain (the side with the greatest injury), but the charges were randomly seen throughout.

The data confirmed Corey needed to remain on medication but now the challenge was WHICH medication and how much. This balance is the trick! The correct levels don’t stop the charges, but keep them from escalating to a convulsion. The wrong levels over medicate her and affects her physical and cognitive function.  

Now for the triumph…which requires everyone that is reading this to KNOCK WOOD so we don’t jinx this next part….

The Doctors prescribed two medications. Corey has not had a convulsive seizure since the change in medications.

When she went back to Bryn Mawr after the seizure lab and medication changes, the therapists instantly noticed the improvements and were amazed. Corey quickly increased her physical function, alertness, processing, and overall awareness. She has also shown improvement in short term memory recall.

Corey just completed six months of out-patient therapy at Bryn Mawr. On her final testing day, she walked 444 feet in 6 mins. She continues working on her strength and stamina. She can open her left hand and is trying to rotate the movement to ‘palm up’. Once again, she is playing board games, initiating conversation, asking about the daily and weekly schedule, asking to ‘help’ with the cooking, asking for more social activities and most importantly, she’s laughing and showing her sense of humor with witty comebacks, as she frequently teases me in any given conversation!

So, here we are beginning year 13 of this TBI journey. The phrase LUCKY 13 keeps popping into my thoughts. Did you know in some cultures, the number 13 means “assured growth” or “definitely vibrant”. That’s why it’s actually considered ‘lucky’.

Looking back to the events of the last year; the fall, the seizures, the rehab progress since May, I’m choosing the perspective that this coming year will be LUCKY 13.” Assured Growth”, and given the medication changes, Corey is “Definitely Vibrant”.

PS: our 13th year includes Corey’s birthday on October 13th, she will be 31…no matter how you look at the number it’s definitely LUCKY! xoxo