Final Step!


Today was the final day at the Dr’s office. He got his third head turbin replaced and bandages removed from his chest, and first programming done.


Left: Colin with implanted boxes in his chest.

Center: The boxes that were implanted in each side of his chest. The inner wire as shown is the lead that was implanted into the brain. The outer larger lead is the one that goes from the connector at the top of his head down to each box in his chest.

Right: Shows the scale of the box. The boxes aren’t huge, but because Colin’s chest is so skinny it makes them look huge.


PROGRAMMING: This was the final leg of today’s visit and probably the most important. It actually went very well! We learned today that Colin has a very high threshold for the voltage into his head. This is a very good thing because it means he has a lot of distance before side effect, plenty more in fact then he will need in order to get to full benefit. He was able to tolerate over 6V, while 2-4 volt is all that is ever required. Many do not get to full benefit because they are limited by their own body’s natural ability to tolerate the voltage. If they cannot tolerate the peak voltage required to curb the symptoms, a balance must be set thereby compromising the benefit.

Colin is now set for 1V in each lead. Starting Friday night, we will begin to increment the voltage up?by 100mv (or .1V) every night until either satisfactory benefit is reached or the 3V limit, whichever is first. Our first appt is set for 1 month out where we will come back to SF and get final signoff, acheive a finer dial-in to programming, and if needed get a higher voltage threshold setting above the 3V limit that is currently set.

We will continue to post on Colin’s progress as we move into a new chapter of his life where he can once again be?all that he yearns to be at 7 and beyond….. Thank-you all for your love, support, and prayers that you have sent our way as you can never know how much it has meant to him and to us. 🙂



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  1. Yahoo! Such great news about the first programming and Colin’s capacity for higher voltage as needed! He is off to a wonderful start and I’m sure that it will be awesome to return home and be with the rest of his family, his pets and his classmates and to resume his life. Congratulations on everything going so well. I look forward to reading about updates on his continuing progress! Take care, Martha

    • The Setterberg Family on April 30, 2012 at 3:06 am
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    Such a trooper!!! So glad that everything went well and you will be home soon. Take care and stay strong lil man. Give us a call when you are ready for playmates. Conner can’t wait to see you.

    • Ms JoJo on April 30, 2012 at 10:08 pm
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    OMG!!! You are such an amazing person-I never had any doubt in your strength and courage! I am SO proud of you and I CANNOT WAIT TO SEE YOU!!!!
    Knuckles (shark),
    Ms. JoJo

    • Denise Moe (Aaron's mom) on May 1, 2012 at 2:51 am
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    YA-HOO!! So glad to hear that he not only was able to tolerate the voltage, but exceeded what is normally required. I know this was probably a very nervous step (wondering if it would all be worth it) – and YES – it paid off. We can’t wait to see how this helps him progress over the next several months. Praise to the doctors and nursing staff you had and most of all -Praise to Mom and Dad for all your hard work, sleepless nights, tears and prayers. Your little boy is so tough and must have a strong spirit.
    Come home soon (we miss you)
    Moe Family

    • Ben Cass on May 1, 2012 at 7:05 am
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    I am so happy for you Colin and your entire family! Tyler asks about a lot and cant wait to see you again. He has made me promise to invite you to he and Trevors summer party in a few months.

    • Carol Flynn on May 1, 2012 at 3:23 pm
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    So happy to get the updates on your progress Colin. Sounds like you are doing great! Again, compliments on the wonderful blog and your personal courage. Love your smile. Hugs, Carol Flynn in Fairfield.

    • Steve Goldstein on May 1, 2012 at 10:40 pm
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    Colin, my daughter Emily had the EXACT same procedure about three years ago with Dr. Starr. She was eleven at the time.She also has Dystonia and the DYT1 gene. I am thrilled to say that she just RAN in her first 5k race last week. DBS surgery is AMAZING and I am sure that the results will be the same for you Colin. Dr Starr is a genius and he has changed the life of Emily. I am so happy for you Colin. You will be playing again real soon!!

    • Garett Semeit on May 2, 2012 at 1:56 am
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    We are so happy for your entire family. What a great success already. Garett is so excited to have Colin back in class! We will continue happy thoughts and prayers!!
    Garett Semeit and family

    • Carrie on May 2, 2012 at 4:37 pm
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    So happy to hear!! We hope to see you at our RBI Tournament 🙂

    • Teresa on May 4, 2012 at 4:50 am
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    We are so happy for your whole family. Madison is excited that you are back at school. What a strong and determined young man you are. An inspiration, really, an inspiration.
    Lots of love,
    The Marriott family

    • Irma Ramirez on May 8, 2012 at 5:20 pm
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    We are so happy to hear Colin is doing great. Hopefully we can get together soon. We have you in our prayers.

    Love, Ramirez Family

    • Larissa on May 11, 2012 at 6:37 pm
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    I am so glad to hear your son is doing good! I came across your blog and it is very similar to my son’s story. He also in the last year (at the age of 8 ) was diagnosed with dystonia with the DYT1 gene. He had the limp to start and has recently taken a turn for the worse. We are scheduling DBS for him. I would love to get in contact with you. My e-mail address is

    1. I would love to share our experience with you. I sent you a private email with my contact information or you can email me at


    • Max Yeates on May 22, 2012 at 10:55 pm
    • Reply


  2. I am so happy for u sweetheart. I knew I would see you play ball again. We love you baby. Thank you god. You have answered are prayers. Please continue to watch over are little angles. Colly can I tell you something. ME & YOUR BROTHER LOVE YOU SO MUCH.

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