Commencing initial programming...

After the October surgery and the very hopeful signs during the operation, it was difficult to wait until the day when we would return to Fort Worth for the DBS to be turned on. That day finally arrived this week, and we made our way south on Tuesday, Nov. 13. During our multi-hour visit, various settings were tried on each of the four contact points in the new location (STN). The most promising setting was identified, and we saw Adam being able to stand, take steps, and move his arm and hand with more control. Before we left we discussed a return to PT and OT, possible use of braces for his elbow and ankle/leg, and a follow-up appointment in January. We also were instructed in one setting change that we would be able to make at home.

When we left Fort Worth we were cautiously optimistic about the success of this new placement.

The first day after returning home, Adam felt that the benefits from the DBS were holding for the most part, with perhaps less effectiveness noticed by the evening. The second day, he felt that all of the affected muscles had tightened back up, and felt similar to how they had prior to having the device turned on.

While this was disappointing (especially in its similarity to the pattern we saw of initial benefit followed by a return to the baseline during the previous round of DBS), we are all trying to keep a very optimistic outlook and to remember that it is very early in the programming for the new location. We have been told before that the full benefit of the DBS won't likely become evident for a few weeks, and may take several months to a year to fully develop.

For now, we are working on re-starting PT and OT, doing stretches at home, and Adam is very much looking forward to the successful end of his first semester at college!