Friday, Saturday and Sunday, August 25th through 27th

Hello,

It was a very busy weekend for us all and Tori put in many travel miles in the van going various places. Tori slept very well all weekend and didn't wake up once during two of the nights.

Friday was Tori's golf tournament fundraiser which I recapped earlier. It certainly was a fun event and successful as well. Thanks again to everyone who participated!! Tori was calm and attentive throughout the event and spent probably 7 hours in her wheelchair during the day.

Tori unfortunately has had several more seizures during the weekend... She initiated two of them completely on her own without anyone even touching her. In extreme myoclonus episodes when her arms and legs are having tremors she eventually becomes completely stiffened with glazed eyes and then the seizure lasts for about 30 seconds. After she snaps out of it she is very scared and cries often with tears. It is heart breaking to witness... Then she is completely calm and very, very loose in all of her limbs. Her arms are almost spaghetti like and can be moved anywhere without much any resistance. The seizures take alot out of Tori we are afraid...

I spoke with the neurologist at the PCMC Friday and we are now maxed out on keppra at 1500mg doses twice per day. We are now trying to use inderal to control the seizures and myoclonus but thus far it hasn't seemed to have any affect on her. Tuesday we will be at the PCMC for an appointment and will discuss our next options. We will not tolerate having the myoclonus and seizures anymore even if depakote is the answer. It seems like we have gone backward over the last month or so...

Tori spent most of Saturday watching numerous movies and she waqs out on the deck for quite a while as well. Sunday was Costco day and Tori enjoyed all of the food samples like never before!! With Brendan as our guide, we made our way through all of the samples that included grilled chicken, cheesecake, fruit juice, tortillas, chip dip, ravioli and finally a Costco slushie. Tori just kept eating anything she was given!! At home when she is eating, we have been trying to make her consistently ask for more by vocalizing a 'Yaaaa' or making a sound. She will do it much of the time but not 100% yet so we'll just keep working at it.

On Monday, Tori is scheduled to get her ingrown toe nails finally addressed... We are visiting a local podiatrist and hopefully the procedure will go smoothly and Tori's foot pain can be eased.

And that is the weekend update!!

Thank you all,

-Tim