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May 22

4 weeks turned on and Playing Ball!

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!

 

12 comments

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  1. Lori

    That is so great to hear! What incredible news!

  2. Teresa

    Such fabulous news. Brings tears to my eyes. So happy for all of you and especially little Colin. Such a brave happy soul. Lots of love, the Marriott family xxx

  3. Khila Mix

    He looks so great! What fun to play ball! I love the smile on his face.

    We send our greatest wishes for continued success! Truly amazing.

    Thoughts are with you always,

    Khila and Family

  4. Michelle

    Amazing news!!! So happy for
    Colin!! Let’s get the three Cs together soon!
    Colin, Carson and Conner. 😉

  5. Martha Murphy

    This latest news is simply amazing!! How absolutely wonderful to see the photos of little Colin playing ball again, and to read the encouraging post. I hope and pray that he continues to improve and do well with some programming adjustments.

    Take good care,
    Martha

  6. Aunty Veronica

    Yea!! I’m so extremely happy for you all!! He looks fantastic!! The smile on his face says it all!!!
    Colin has a wonderfully Mommy and Daddy I love you all so much! Thank you for the great news!!!!

  7. Denise Moe (Aaron's mom)

    We are so excited to see his progress. Aaron has been telling me everyday how well Colin is doing in school.

    It is so nice to see pictures. I couldn’t believe it!!!!

    If you are around this weekend, we will be at the RBI tournament. Come by and Aaron would love to throw the ball with Colin.

    You are still in our prayers!! Here’s to more improvement EVERY DAY.

  8. Carrie

    So happy to hear!!! Looking forward to Colin throwing out the 1st pitch on the Pony field to kick off RBI this weekend 🙂

  9. Marci Goldstein

    This brought tears to my eyes! Love, love, love Dr. Starr!

  10. Garett Semeit

    Awesome news! We are so happy to hear all the progress. Garett says Colin is doing great in class. Loved the pictures. Thanks for updating us! Much love Garett Semeit and family

  11. Carol Flynn

    Wonderful progress!! I couldn’t be happier for all of you and hope that symptoms will continue to disappear with a little more fine tuning. All the best, Carol Flynn, Fairfield, CA Dystonia Group

  12. Dayna (David's mom)

    You have a very sweet blog! It’s wonderful to see how the DBS is helping Colin!
    Blessings! Dayna(from DBS for Dystonia group)

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