Hi Everyone,

I began the day with a Monday morning update call to the DC doctors. They are deferring to the Seizure specialist for the new administration dosages and timeline but everyone is in agreement with the medication choices. We did witness a ‘quiet’ episode during OT today. There may be some contributing circumstances that led to the episode.

Corey was awake from 12:30-2am and then again at 3:30-8:00am. She finally slept from 8-11:30. After the usual morning routine of dressing, she ate breakfast (cereal and an apple) at noon…technically it was brunch. We left for Bryn Mawr at 1pm. She exercised hard using assorted walkers during PT at 2pm and worked up a sweat. Corey then moved to OT and opened the session with 31 push ups kneeling on the matte (the extra push up was “one for good luck”) She was so warm she was fogging her glasses. Anne gave Corey a good break and we checked her blood pressure (a common practice during PT and OT when she is working hard). Her pressure was good; 122/76. After a break, Corey sat up and was working on some extended arm stretches. She stopped between sets reaching for the back right side of her head. She said it felt like someone put a needle in her head. She continued with the next repetition but I noticed her gaze was off. Her eyes looked as if she was suddenly tired. (Understandable with the level of her workout so I watched her color and expressions carefully). Anne was asking Corey questions about what she physically felt in her shoulder during her stretch but there was significant delay in her response. She looked dazed. I interrupted to ask her how she was feeling; she turned her head to stare at me moving in slow motion, her eyes were heavy and she answered with slurred speech. I asked her what her head felt like, was there pain? She said no but it felt like pins and needles. We checked her blood pressure again, 114/76. After about 4 minutes she seemed to perk up and speak normally again (her normal speech is not clear but can be understood).

Fatigue, possible dehydration and not eating enough before and/or snacking between sessions may have contributed to today’s episode. Corey never lost consciousness or the ability to respond. She did not develop any facial paralysis nor had limited mobility at any point during this episode, so we can not call this a seizure. However, we are watching her like a hawk to make sure we don’t miss any sign that may compromise her medication stability. Project hydration and protein will be strict protocol for future sessions!

Botox update;
We are holding our breath for the botox to arrive at the hospital tomorrow. It’s amazing how 16 phone calls through 3 departments and 2 supervisors can help track the timeline from referral – to approval – to getting the drug out the door to ship to the pharmacy.

Advocacy word of advice to everyone out there…
1. ALWAYS note the date and time of your call and MOST IMPORTANTLY, get the name of the person you’re speaking with when you call any company for any product. If you have these 3 components you can follow any trail.
2. Don’t be afraid to ask the person “looking at their notes” to read the notes aloud to you…it is amazing what you can learn about what was heard on their end, the time the information was received and how that information was translated and expedited to either action or misdirection.

Corey is very tired tonight and rightfully so. I hope we both get a better nights sleep tonight and we get a call tomorrow that the botox arrives…fingers crossed, xoxo