Here we go...

What a difference a day makes...cliche, I know, but a fairly good phrase for our week! On Monday of this week (March 19), we headed back to Fort Worth for an appointment with Dr. Marks, the movement disorder specialist. He is the one we first met a year ago to talk about the possibility of deep brain stimulation (DBS) surgery to treat Adam's dystonia. Since epilepsy surgery must precede DBS, we spent the next several months going through testing and eventual surgery for epilepsy. Now, we were back with Dr. Marks, and we learned that he still strongly recommended DBS for Adam.

This was positive news! When we started talking about possible surgery dates, he first mentioned summer dates (July), but then he quickly switched gears to tell us about a cancellation that had occurred, opening up a date on March 28. I verified that I had understood correctly by asking if he meant next week, to which he initially appeared surprised, but then confirmed that was indeed what he meant. We all agreed to move forward with that date, assuming that all of the logistics could be worked out that quickly. I started doing the mental gymnastics of figuring out what we would need to tend to on the home front...I then felt a little queasy and overwhelmed...but eventually felt assured that we could make the necessary adjustments to our schedule, get a kennel date for Holly, etc.

So, the plan is that we will drive down to Fort Worth on Sunday, various pre-op appointments and tests will take place on Monday and Tuesday, and then surgery will take place on Wednesday. If all goes well, Adam will be released on Friday, we'll head home, and then return the following week for the initial programming session for the implanted device. If you want to learn a little more about DBS, you can check out the video that is linked from the hospital's webpage: https://www.cookchildrens.org/SpecialtyServices/Neurosciences/Services/Pages/Neurology.aspx Click on the video link for "Deep Brain Stimulation" and you can see some of the doctors that Adam is working with, as well as learn a little more about the procedure.

If you've been following us for awhile, you may be curious how things are going since the fall surgery. As of Monday, Adam had not had any seizures since leaving the hospital in November. Perhaps due to the long day in Fort Worth combined with all of the excitement of the upcoming surgery, Adam did have a seizure on Monday evening as we were en route home. This was a disappointing addition to our day, but we are still hopeful that it was an anomaly rather than a return to a regular pattern. We'll be following this to see what happens from here forward.

We'll keep you posted!