A Second Chance at a Second Chance

It’s hard to believe that Lexi’s DBS adventure began  7 years ago. That first surgery was completed in  2009 and has been extremely beneficial for Lexi. She still, however, struggles with the functional control that she so deserves.  Last summer, we spent a week at Children’s Mercy hospital in Kansas City for intensive DBS programming with Dr Steve Shapiro (her original DBS doc from 2009) and Dr Brian Aalbers, an amazingly gifted DBS programmer for kids with dystonia. At the end of this week Dr Aalbers felt like Lexi could benefit from a second DBS lead into a different motor center of the brain. Most importantly, Lexi, now 14, was eager to consider a second chance at a second chance, so Ken and I felt like we needed to give some serious thought to the idea of a new lead.

For the last year we have been all over the US to gatherinformation from top DBS practitioners to see if they agreed with Dr Aalbers and if so, where they felt the new lead should be placed. The consensus was that the ventrolateral nucleus of the thalamus (VL thalamus) would give Lexi the best chance at improved function. Just like with the original surgery, this has not yet been tried in a patient with kernicterus, so we have absolutely no idea if what looks good on paper will work out as well in real life. We are wading into uncharted yet oddly familiar territory.

The three of us, along with Lexi’s service dog GUS, leave in a week and a half for Kansas City, where the surgery will be performed. If all goes well the procedure will be pretty quick and Lexi will be out of the hospital within a day. The real work, however, begins after surgery as we restart the tedious process of programming the new device.

Thank you all for your constant support of Lexi and our family. We truly appreciate the well-wishes, good thoughts and prayers for he ras she begins this next chapter. We will keep you posted on her progress!