Update Thursday August 11, 2016

We have happier news to report today.  The new setting on the Neuropace seems to be doing the trick.  Bob has now had two seizure free days!  We are hoping that we are on a roll and can keep up this good progress.  Thank you for all of your prayers.  We are feeling very held in your love and concern.   Bob got a haircut today and even with a close crop, the scars of his incisions are looking good and not too noticeable. Lots of love, Megan

Update Monday, August 8

We saw our neurologist at the University of Virginia today and we are feeling a little more optimistic.  Apparently when they turned the Neuropace device on last Tuesday, they had a choice to start the settings at either 0.5 or 1.0.   Tiara, the Neuropace engineer who will now fly to Charlottesville from Charlotte NC to be at all of our regularly scheduled doctor visits, and Dr. Fountain discussed it and decided to begin at 1.0.  Unfortunately, that seemed to have irritated Bob's brain and resulted in more and more intense seizures this past week. So Dr. Fountain moved the setting back to 0.5.  We are hoping that Bob does better at this level.  Bob did not have any seizures yesterday and so far has not had any today.  We're feeling hopeful that this will do the trick. If not, they will turn it off completely for a period of time to let Bob's brain rest and recover and then try again, starting at 0.5.

It is reassuring to know how many people are pulling for us and lifting up healing prayers for Bob. Thank you for your caring and prayers.

lots of love,

Megan

Updte August 6, 2016

We are standing in the need of prayer. Bob has gotten off to a rough start with the Neuropace.  He has had either one or two seizures strong enough to take him to the floor each of the five days since the Neuropace device was turned on. This is a significant increase in both the number and severity of his seizures.  We read in the literature on the Neuropace that for some people, the device actually makes their seizures worse.  We are hoping and praying that this is only temporary, that it is just a matter of needed adjustments to the settings and that things will settle down again soon.  We are heading back to see our neurologist on Monday and hope that the changes he makes get us back on the path to improvement in Bob's seizure activity. Please keep Bob in your prayers.

Megan

Update Aug. 2, 2016

Today was a big day! Bob had the staples and sutures from his surgery removed, and the doctors turned on his Neuropace device so that it can begin to disrupt seizures as they begin.  It has been a journey of more than a year and a half since Laurel's friend MaryLou Teare noticed a story in the Cleveland Plain Dealer about a woman with epilepsy who had the Neuropace device implanted as part of the clinical trials.  MaryLou wondered if it might be something that would benefit Bob, and passed the article along to us.  We are so excited to finally have it in and working!  There will still be some fine tuning over the coming months, but we are hopeful Bob will respond well.  Just this evening, Bob had the feeling that a seizure was starting but it did not develop into a full seizure. So the device may have vanquished its first seizure already!

We are so grateful for all of the love and support we have received over the course of his illness.  Thank you, each and every one of you.

Update July 20

There's no place like home! Just two days after brain surgery, we are home again, and Bob no longer even has any bandages on his head! This afternoon, Bob has not even wanted any pain medication other than Tylenol. The quickness of all of this just seems surreal!  We've already fired up his new dedicated NeuroPace laptop, downloaded the data from the device to the computer, and uploaded those data to the cloud. Paul Simon was right. These truly are the days of miracle and wonder! We are grateful for the ways that your thoughts and prayers have supported this miracle! Now we will pray that Bob is among those the NeuroPace researchers call "responders", meaning that over time he has a substantial reduction in his seizure activity.

Update Tues. July 19

Bob continues to recover well. He was moved from ICU to the regular floor this morning. He is resting and regaining his strength. We are on track to head home tomorrow! Thank you for your love and prayers.

Update Tues. July 19

Bob continues to recover well. He was moved from ICU to the regular floor this morning. He is resting and regaining his strength. We are on track to head home tomorrow! Thank you for your love and prayers.