Surgery date set for January 23
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Thread: Surgery date set for January 23

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    Default Surgery date set for January 23

    Isaiah is scheduled to get his Deep Brain Stimulator on January 23. He will have the surgery at another hospital and then transfer to Children's to recover. (They will transfer him asleep and recover him in the PICU due to previous complications from surgery.) I'm very nervous about this as it less than 3 weeks away. But he is struggling so much now, it's beyond time.

    Deb ................. DH Norm
    DS Caleb, 13 ...... DS Patrick, 12
    DS Isaiah, 8 ......... DS Thomas, 7

    DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
    William, 14 weeks, 4/11/12

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    It is never easy to send your kiddo into the OR! Hopefully this gives him what he needs though. (((hugs)))
    Natalie & Dan - June 2, 2001
    Samma - Nov. 5, 2004
    Tommy - Oct. 19, 2007




  3. #3
    Community Host sarahsunshine's Avatar
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    That's coming up quick. We're thinking about him and hoping for the best.
    Skyler Dylan 22 April 1999
    Reed Aslan 17 June 2007 ~ 8 September 2008
    Ivy Rayne 3 May 2009
    Leo Spencer 2 Sept 2010
    Forrest Reed 15 Aug 2012


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    I can't even imagine how nervous you must be! I lose sleep over doctor's visits! lol
    Definitely praying for your family right now!

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    Thanks, you all. I have him home right now. His symptoms are so bad right now and so unstable that I can't send him to school. His neuro wants me to keep him home until after the surgery. Fortunately, we have an aide during the day and a nurse at night, 5 days/nights a week, so that helps.

    Deb ................. DH Norm
    DS Caleb, 13 ...... DS Patrick, 12
    DS Isaiah, 8 ......... DS Thomas, 7

    DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
    William, 14 weeks, 4/11/12

  6. #6
    Community Host sarahsunshine's Avatar
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    Wow - That must be tough on everyone. How are the other kiddoes dealing with this?
    Skyler Dylan 22 April 1999
    Reed Aslan 17 June 2007 ~ 8 September 2008
    Ivy Rayne 3 May 2009
    Leo Spencer 2 Sept 2010
    Forrest Reed 15 Aug 2012


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    Poor thing! Continuing to pray for him.....

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    (((hugs))) to you and the whole family!
    Natalie & Dan - June 2, 2001
    Samma - Nov. 5, 2004
    Tommy - Oct. 19, 2007




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    Quote Originally Posted by sarahsunshine View Post
    Wow - That must be tough on everyone. How are the other kiddoes dealing with this?
    They are all kind of taking it in stride. It's been over a year since he started to get really bad, so they are used to it. We are trying not to talk about the surgery too much because it will cause him major anxiety and make his symptoms worse. The little ones are cute. They seem to understand what's going on with him. They will help him out with things and say, "he can't do that right now because he's shaky." One day, our 4-year-old daughter said, "If Isaiah doesn't sleep, he gets the Sonic." I had to think about it for a minute before I realized she meant he gets "dystonic." lol. But amazingly, we haven't had a lot of acting out. That may come later, during or after the surgery.

    Deb ................. DH Norm
    DS Caleb, 13 ...... DS Patrick, 12
    DS Isaiah, 8 ......... DS Thomas, 7

    DD Cherish, 6....... DD Emily, 7\18\13 ....... Ripple, 17
    William, 14 weeks, 4/11/12

  10. #10
    Community Host sarahsunshine's Avatar
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    I'm glad everyone else is taking it in stride. I know that Ivy has been amazing with Skyler and his surgery. She was always excited to go see him at the hospital, wanted to make sure that no one hurts his “big owie”. In fact, now she’s always asking if “Skyler’s owie is all better.” In fact, last night, she was playing with a stuffed animal who was “sleeping because he had a big owie on his chest and needs to sleep to make it better.”

    I hope that things stay quite calm around there, and that this helps Isaiah. Thinking of you guys often.
    Skyler Dylan 22 April 1999
    Reed Aslan 17 June 2007 ~ 8 September 2008
    Ivy Rayne 3 May 2009
    Leo Spencer 2 Sept 2010
    Forrest Reed 15 Aug 2012


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