Happy Summer!


Hope all of you are enjoying your summer so far. The above photos are Colin enjoying the Fair. We were just so excited that he was able to walk the entire fair grounds all day with no problems at all! This was his first time out walking around for this length of time in over a year…He was so happy. Colin is also enjoying swim lessons and is trying really hard to get the swim strokes down, he is having a blast this summer. Next up will be soccer sign ups. Colin had a follow-up appointment with Dr. Starr on June 13 to adjust the stimulation settings on his DBS. We had noticed prior to the visit that he seemed to be having some reaction to the stimulation causing some mouth movements that were not there prior to turning up the settings.

We reduced the voltage to 2.6 and then Dr. Starr’s team split the voltage that was going to 2 contacts to now 4 contacts. They also reduced one side back down to 2.0 as they agreed that he was probably being a little over stimulated. They are having us up the voltage very slowly to try and help the additional areas of his arms and left leg that still have some movements going on. We have also started to reduce his medication and he is almost completely off the medication Baclofen. We will continue to update on any changes. Hoping he will be able to write better by the time second grade starts. His next appt. is set for September 5th.

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