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Re: [CEREBRAL PALSY CLUB] my son Mason

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  • Debra Marasco-McNulty
    Look up info on Sensory Integration and Baby massage. I do not know about West syndrome, I will look it up at my resource library tomorrow. My son is 27 yrs
    Message 1 of 3 , Oct 1, 2003
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      Look up info on Sensory Integration and Baby massage. I do not know about West syndrome, I will look it up at my resource library tomorrow. My son is 27 yrs old now, he was 8 wks premature, had a stroke at 5 1/2 wks, and now has micro-cephalic cp. When he was 1 yr old, his head circumference was the same and his skull was totally fused, without soft spot etc. I take care of children with different disabilities and SI and massage has always been a plus. The only exception was with a newborn I helped take care of that was born with brittle bones disease, this required modification and restraint when practicing SI and massage. As you check into these, you will see why.

      Meanwhile, try to treat Mason as normal as possible and expect him to live up to his full potential as you would your 5 older children. Help him to live the full quality of life that we all want. There may be realistic restrictions, but don't accept society's restrictions. You have embarked on a new journey with potholes, turns, ups, and downs. But consider it an adventure and enjoy the ride.

      Am I looking through "rose colored" glasses now, yes, whenever I can, because there were many times I couldn't look forward to the next day because of what was in front of me at the time. But over the years with my Jason, I have become an optomistic traveler accompanying him on his journey and look forward to the next miracle or even change of scene.

      I'll stop my meandering now, and close with a prayer for Mason and your family.
      debraphp@...

      stacey tupa-tucker <tupatucker@...> wrote:
      Hi my son Mason will be 5 mos on fri. he has been diagnosed with c.p.
      we are looking for any helpful info. all we got from his docs is this
      noticable this soon isnt good. Mason also has west syndrome which
      isnt under control yet..we start steroids on fri. we found out today
      that Mason's head size hasnt changed in 3 mos. his head size is same
      as when he was 2 mos. old..he starts pt through a program called
      babies cant wait when they find us a pty person that can come to our
      home. is there something we can do at home? he is always so
      stiff...his hands stay clenched...he doesnt smile..doesnt recognize
      us...and cant hold his head up..Mason is our 6th child...we are new
      to this...plz any info will help sooo much..thank you stacey


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    • Christine Kramlich
      Well, welcome to the club....really. My daughter is 16 months old so we re a little further down the road than you, but not too much. Yes, there will be
      Message 2 of 3 , Oct 2, 2003
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        Well, welcome to the club....really. My daughter is 16 months old so we're a little further down the road than you, but not too much. Yes, there will be plenty you can do at home and as soon as your therapies start, they'll tell you more than you probably want to know! There are things you can do to make him more comfortable, to encourage him to interact, communicate and to learn to the best of his ability. Yes, it's hard...especially at first and it's going to get harder, but we're here to help in any way we can. If you have any specific questions, I'll be glad to help in any way I can.

        Get therapy (occupational therapy, physical therapy and speech therapy, at the very least)

        Look into sources for financial assistance (you'll need it). There are programs out there in many states that help children with special needs and their families...it's a form of medicaid called oftentimes 'deeming waiver'.

        Get a good doctor...one that will listen to you for as long as you need and answer all your questions as best as possible

        Love yourself and take time for you.

        Love Mason too...don't let your life turn into therapies and appointments and forget to let him just be Mason.

        I hope this helps some.
        Christine K.
        ----- Original Message -----
        From: stacey tupa-tucker
        To: cerebralpalsyclub@yahoogroups.com
        Sent: Tuesday, September 30, 2003 5:05 PM
        Subject: [CEREBRAL PALSY CLUB] my son Mason


        Hi my son Mason will be 5 mos on fri. he has been diagnosed with c.p.
        we are looking for any helpful info. all we got from his docs is this
        noticable this soon isnt good. Mason also has west syndrome which
        isnt under control yet..we start steroids on fri. we found out today
        that Mason's head size hasnt changed in 3 mos. his head size is same
        as when he was 2 mos. old..he starts pt through a program called
        babies cant wait when they find us a pty person that can come to our
        home. is there something we can do at home? he is always so
        stiff...his hands stay clenched...he doesnt smile..doesnt recognize
        us...and cant hold his head up..Mason is our 6th child...we are new
        to this...plz any info will help sooo much..thank you stacey


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