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Thread: Matt

  1. #1

    Default Matt

    Matt had botox a couple weeks ago and gained 8 degrees range it seems on the worse side, nothing on the less affected side. He got casted for new AFOs today and gets to choose his own design from any photo/picture/design he can dream of. So cool. I may actually put a face to my name and add photos of them also once they arrive! He also got his first serial cast today in boring white. Hopefully it won't be too painful for him. He had a repeat sleep study/EEG but we didn't get the results yet. Tomorrow is neurology also. All the appts at once. Guess I ought to return to the ped and endo as well for f/up if i'm on a roll.

    overall, he's doing alright though.

    thinking of you all.
    Lucinda
    mom to four boys who keep things interesting...

  2. #2
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Glad he made some gains with the Botox! How does the serial casting work? (C has never had to have that...yet!) It's always fun to get new AFO's! C just got new ones, her old ones were 2 yrs old and horrible. The new ones are much more comfy on her, they have some kind of foam 'boot' that goes all the way around so it is not plastic on her foot, the foam is what her foot rubs on. Good luck with neurology...sometimes it is nice to get everything done at once and not have to think about it for awhile! :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  3. #3
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    Quote Originally Posted by andromeda31 View Post
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    Hi!

    Glad he made some gains with the Botox! How does the serial casting work? (C has never had to have that...yet!) It's always fun to get new AFO's! C just got new ones, her old ones were 2 yrs old and horrible. The new ones are much more comfy on her, they have some kind of foam 'boot' that goes all the way around so it is not plastic on her foot, the foam is what her foot rubs on. Good luck with neurology...sometimes it is nice to get everything done at once and not have to think about it for awhile! :)

    Lisa O.
    Foam around her AFOs???!!!!! So lucky!!!!! I wish I had had those when I wore AFOs. The plastic AFOs drove me freakin' bonkers because they were so uncomfortable.

  4. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lucinda & Matt))))))

    Glad to hear the botox worked!

    I think you should take a photo of Matt's snazzy AFO's and make it your avatar! :)

    Hope the neuro appt. went well today. I agree, get it all over with at once. The holidays are approaching fast. Better to get things done and out of the way.

    Love & Light,

    Rose

  5. #5

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    The serial casting is where he gets a cast (fibreglass) on his leg up to just below the knee. He is measured before and then, while the cast is setting they hold his foot in position a few degrees stretch from where the catch began. Each week they change the cast and stretch it just a little further, if he tolerates it, until we get to our goal or can't take it anymore. They are walking casts. We are doing one at a time but have done both at the same time.

    Neuro went fine. Uneventful because we didn't get the sleep study/EEG results in time for the appt. Oct. for that.

    thanks
    Lucinda
    mom to four boys who keep things interesting...

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