We waited a little while to update the blog as we’ve been kind of holding our breath, but we can’t deny it any longer. He is walking, running and playing ball! Colin has been receiving stimulation from the DBS for 4 weeks now and is doing great. We have been upping his voltage and now he is at 2.7 volts. The UCSF team wants us to get him to 3 volts prior to our follow-up visit on June 13th. We are so thrilled with the results and Colin is too, but there is still some uncontrolled movements in his arm (he is still unable to write), feet, hip, and his walk is still slow.
We are hoping to get better control of this with some fine tuning during his programming in June. You probably wouldn’t be able to tell Colin had dystonia if you did not know him and we couldn’t be happier! Dr. Starr is a Star and we are so grateful for his phenomenal ability to perform this surgery. Thank you all for following Colin’s progress as we continue to update the blog as we go! We couldn’t have made it this far without Dr. Starr, his team, and all of your positive thoughts and prayers. We can’t thank you enough!