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Re: [CEREBRAL PALSY CLUB] Shannon- Listing of Shriner's Hospitals

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  • Shannon Tinsley
    Thanks Jennifer, I know the information will be very helpful. I m in the process of looking for a home for Jordan and I that would accomodate her needs ie:
    Message 1 of 12 , Apr 12, 2004
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      Thanks Jennifer,

      I know the information will be very helpful.

      I'm in the process of looking for a home for Jordan and I that would accomodate her needs ie: walking with the walker and wheelchair. I'm currently staying back with my mom after loosing my job and she has a really small apartment, so in the afternoon and on weekends she's not really able to walk around with the walker. Keep your fingers crossed and thanks again.

      Shannon.

      Jennifer Zubko <monette_12@...> wrote:
      Dear Shannon,

      There are no Shriner's Hospitals in the New York City area. Probably because of the high quality of medical care available within the city itself. For a listing of Shriner's Hospitals, you can go to:

      http://www.shrinershq.org/shc/index.html

      The Shriner's Hospital Twin Cities is thought of very highly
      by many parents of children who have cerebral palsy. They do everything there from bracing/orthopedics to rhizotomy and Intrathecal Baclofen (surgery to reduce spasticity).

      The Shriner's Hospital in Houston also lists cerebral palsy as a specialty.

      The good thing about Shriners is that I believe they provide transportation to/from facilities for families whose children are in need of care.

      If you can't get transportation there, look into Miracle Flights for Kids. Provide flights to/from medical appointments for children w/ disabilities, chronic illnesses, etc.AND OF COURSE, FOR THEIR FAMILIES.

      http://www.miracleflights.org/

      Again, everything at Shriner's is free, so that's a good thing.

      Hope this helps.
      Jenn









      "To love another person is to see the face of God"
      -Victor Hugo in Les Miserables

      "Perserverance is not a long race; It is many short races one after another".
      -Walter Elliot

      "The richness of the human experience would lose something of rewarding joy if there were no limitations to overcome".
      -Helen Keller


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    • Curt & Kim
      Hi Debbi, I have twins. They are fraternal and they are boys - 2 1/2 years-old. They were born 13 weeks early and one is PERFECT (Brixon) if not advanced in
      Message 2 of 12 , Apr 12, 2004
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        Hi Debbi,

        I have twins. They are fraternal and they are boys - 2 1/2 years-old. They
        were born 13 weeks early and one is PERFECT (Brixon) if not advanced in ALL
        areas for his age and the other (Jaxon) has a hearing impairment and
        cerebral palsy which translates to wearing glasses, a cochlear implant,
        braces (AFO's), walks with a walker, etc.

        In regards to your question, I can't tell you how many times I got so
        discouraged with Jaxon's lack of progress I could have hurt someone and then
        one day I realize that he is doing some skill that I thought he would NEVER,
        EVER accomplish. It is true...it just takes time. And, you have to
        appreciate the small steps. So many people have asked me if it was hard to
        have Brixon do everything on track when Jaxon wasn't. No, it never really
        was. I never really compared them directly in that way. I have always looked
        at Brixon as SUCH a blessing as he kept us going with all the fun and new
        things he was doing. And then, whenever Jaxon would accomplish something, we
        would have Brixon praise him too. Brixon is just now beginning to understand
        Jaxon's limitations a bit. I am explaining more and more to him about
        Jaxon's Dr. appts. I can now ask him if Jaxon's ears work good like Brixon's
        and he will say "no," but I still don't think he understands that that means
        Jaxon can't hear him.

        It is so hard not to worry for our children. It comes very naturally.
        Taking each day as it comes though and having high expectations for your
        child will get you through it. Sometimes though, nothing works and you have
        to take the time to grieve. Just realize that when you do that, you can get
        right back up and continue on this journey that your daughter is taking you
        on. It's not a journey you signed up for, but neither did she and she is so
        blessed to have her family accompany her on this journey. Appreciate the
        small accomplishments because they will accumulate. Allow her to develop
        her own characteristics and special ways. She is also blessed to have a big
        brother that undoubtedly will be by her side always.

        Take care and know that you are in many people's thoughts and prayers.

        Sincerely,

        Kim (Jaxon and Brixon's mom)
        -----Original Message-----
        From: punkindebbi [mailto:punkindebbi@...]
        Sent: Sunday, April 11, 2004 9:58 PM
        To: cerebralpalsyclub@yahoogroups.com
        Subject: [CEREBRAL PALSY CLUB] Confused


        Thanks to those who wrote about the speech issue that I brought up.
        I just am very confused. I feel just frustrated that I have all of
        these questions about my daughter, and all of the docs say that we
        have to wait and see, that it is just too early to know. She just
        turned two and all they can tell me is that she has low tone cp. We
        don't know what type of cp, we don't know when or if she will walk
        independently, talk, potty train, what type of school she will go to,
        what the quality of her life will be, if she will go to college, and
        the list goes on and on. I just don't know what her life will be
        like and that is very hard for me. My son is four and he is so
        healthy and active and has done everything early, inclulding walking
        at 7 1/2 months, and we never had any of this fear for his life, or
        all of these unanswered questions. Do any of you have these
        feelings? How do you handle this? It is just so different having a
        healthy child and one who has special needs.

        Anyway, I hope that you all are feeling better than I am right now!

        Debbi,
        Mommy to Caleb 4, and Gracie 2



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      • Debra Marasco-McNulty
        You may want to contact United Cerebral Palsy s (UCP) corporate office. Steve Bennett has been director for 1 year now and has great connections to sources of
        Message 3 of 12 , Apr 12, 2004
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          You may want to contact United Cerebral Palsy's (UCP)
          corporate office. Steve Bennett has been director for
          1 year now and has great connections to sources of
          information. Also through some UCPs you may qualify
          for scholarship money for the purchase of equipement
          etc.

          You have a great/needed plan. I do arts & crafts with
          disabled teens and adults who come to my house for
          extended care. Schools and adult programs close 2:30
          to 3:30 and in our area there is a lack of "childcare"
          for this age group so parents can work.

          Debra Marasco-McNulty, UCP board member in San Luis
          Obispo, CA


          --- Shannon Tinsley <enlighten_me18@...> wrote:
          > Hello Debra and all;
          >
          > I too am the parent of an 8yr old little girl with
          > spastistic cerebral palsy who doesn't walk and has
          > several delays. She is bright and very energetic and
          > likes to try to do the normal things on her ie:
          > brushing her teeth, wiping herself after going to
          > the bathroom and dressing. However, these simple
          > things are very difficult for Jordan and I assist
          > her asmuch as possible.
          >
          > I live in the Westchester County in the state of New
          > York and I'm in the process of creating some sort of
          > recreational activities for children with physical
          > disabilities bringing them Arts & Crafts, Music from
          > noted celebrites and all sorts of things.
          >
          > I ask anyone who knows anything about setting up a
          > Non-Profit organization for assistance in my goals.
          >
          > Debra, just hold on because when the Dr.'s say no
          > your child can still say yes. It will take some time
          > and patience and don't accept the first opinion
          > about your child, dig deeper until you can't dig
          > anymore.
          >
          > Shannon Tinsley parent of Jordan
          >
          > Debra Marasco-McNulty <debraphp@...> wrote:
          > Special children have a way of anchoring us in the
          > present and learn to take day by day. But as you,
          > there is a constant grieving of the "loss" of the
          > "normal" child and the loving of the beautiful
          > angel.
          > My older son was active, healthy, walked at 9 mos,
          > potty trained at 20 mos, etc. I did the common
          > thing
          > of comparing the boys development. Now I just try
          > to
          > treat Jason as normal as possible.
          >
          > Yes, alot of frustration, but many challenges and
          > opportunities.
          >
          > Look up "chronic sorrow", "sensory integration" and
          > "oral motor therapy" as starting points.
          >
          > Debra
          > --- punkindebbi <punkindebbi@...> wrote:
          > > Thanks to those who wrote about the speech issue
          > > that I brought up.
          > > I just am very confused. I feel just frustrated
          > > that I have all of
          > > these questions about my daughter, and all of the
          > > docs say that we
          > > have to wait and see, that it is just too early to
          > > know. She just
          > > turned two and all they can tell me is that she
          > has
          > > low tone cp. We
          > > don't know what type of cp, we don't know when or
          > if
          > > she will walk
          > > independently, talk, potty train, what type of
          > > school she will go to,
          > > what the quality of her life will be, if she will
          > go
          > > to college, and
          > > the list goes on and on. I just don't know what
          > her
          > > life will be
          > > like and that is very hard for me. My son is four
          > > and he is so
          > > healthy and active and has done everything early,
          > > inclulding walking
          > > at 7 1/2 months, and we never had any of this fear
          > > for his life, or
          > > all of these unanswered questions. Do any of you
          > > have these
          > > feelings? How do you handle this? It is just so
          > > different having a
          > > healthy child and one who has special needs.
          > >
          > > Anyway, I hope that you all are feeling better
          > than
          > > I am right now!
          > >
          > > Debbi,
          > > Mommy to Caleb 4, and Gracie 2
          > >
          > >
          >
          >
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