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  • Lynn A Downs
    Hi all!! My name is Lynn and I am a SAHM to four boys. My youngest, Christian, was born at 27 weeks weighing 2 lbs, 3 ozs. On the day before his first
    Message 1 of 15 , Apr 11, 2002
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      Hi all!! My name is Lynn and I am a SAHM to four boys. My youngest,
      Christian, was born at 27 weeks weighing 2 lbs, 3 ozs. On the day before
      his first birthday, he was diagnosed with CP (PVL type). Right now he is
      a happy 5 year old anxiously awaiting the start of kindergarten. He
      walks with the aid of forearm crutches but is making great progress with
      independent walking. We are looking into Botox injections right now and
      are hopeful that he will walk independently into kindergarten.
      I am really looking forward to getting to know other parents of kids with
      CP. I live in a pretty small town and there aren't any real resources
      for parents here. Our closest UCP is almost 4 hours away. Can't wait to
      get to know everyone and their children.
      Lynn Downs

      Be the most you can be, so life will be more because you were. - Susan
      Glaspell


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    • cute20_98@yahoo.com
      I just joined this group and wanted to take a moment to introduce myself. I m Sarah mom to Ian and Sophie,wife to Jeremy and caregiver to all our critters.
      Message 2 of 15 , Feb 10, 2004
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        I just joined this group and wanted to take a moment to introduce
        myself.

        I'm Sarah mom to Ian and Sophie,wife to Jeremy and caregiver to all
        our critters.

        Sophie was just diagnosed with mild cerebral palsy. I am still a
        little shocked. For the last couple of months we had been having
        different tests run because at 18months old she still wasn't walking
        or cruising. She just looks so perfect to me.

        I didn't ask the doc enough qustions today...I have no idea what
        this means for us.

        Would someone with experience please share.

        Sarah&Sophie
      • Kathy Creswell
        Hi Sarah, and welcome. I m Kathy. I have an eleven year old with spastic quadriplegic CP (spasticity affecting all four extremities). Your message touched
        Message 3 of 15 , Feb 10, 2004
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          Hi Sarah, and welcome. I'm Kathy. I have an eleven year old with spastic quadriplegic CP (spasticity affecting all four extremities). Your message touched me because I remember with clarity the exact moment when a wonderful, compassionate Dr. said the words Cerebral Palsy to me. I literally left the hospital and went to the nearest book store to get whatever information was available for me to learn whatever there was to know about this diagnosis. What I found is there is no appropriate book in this world that could have outlined for me what my son would be like. The literature is very helpful in outlining for you what could be for your child although I found it to be very overwhelming and scarey. Cerebral palsy is such a general and broad term to describe a child that has sustained damage to their brain before, during or after birth. Often the cause of the brain injury remains a mystery but can sometimes be attributed to a certain event during pregnancy, or delivery, and more
          obviously an injury after birth. The cause of CP is still a mystery in the medical field. In our case, asphyxia, or lack of oxygen to the brain during delivery, caused the damage to our son's brain. Many will contest that the asphyxia is a symptom of a child with a neurological disoder and not the primary cause of the CP. In our situation, I truly beg to differ. The good news is that CP is not a progressive disorder. The symptoms of CP will not worsen over time. The brain injury affects the motor system, but the severity of damage does not worsen in a child who is correctly diagnosed with CP. I would be very encouraged by the fact that your Dr. indicated your daughter is affected with mild CP. There are many different types of CP and a developmental pediatrician or Dr. of neurology will be able to assist you in identifying the type(s) of CP that your Dr. is suspecting. My heart goes out to you as you begin this journey into what can be an overwhelming medical experience.
          The best advice is to always focus on your daughter's strengths and perfections and remember always that she is and always will be "just" Sophie. My very best of luck to you......

          cute20_98@... wrote:
          I just joined this group and wanted to take a moment to introduce
          myself.

          I'm Sarah mom to Ian and Sophie,wife to Jeremy and caregiver to all
          our critters.

          Sophie was just diagnosed with mild cerebral palsy. I am still a
          little shocked. For the last couple of months we had been having
          different tests run because at 18months old she still wasn't walking
          or cruising. She just looks so perfect to me.

          I didn't ask the doc enough qustions today...I have no idea what
          this means for us.

          Would someone with experience please share.

          Sarah&Sophie


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        • cute20_98@yahoo.com
          I have a few more questions I would like to throw at you folks since it will be at least a couple of more days till I can talk to the Pediatrician again. 1.
          Message 4 of 15 , Feb 10, 2004
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            I have a few more questions I would like to throw at you folks since
            it will be at least a couple of more days till I can talk to the
            Pediatrician again.

            1. Is this genetic? This is my big question since my husband and I
            were thinking about having 1 more baby.

            2. How do you deal with people? So far I've only told two close
            friends and my family. All I hear is "I'm so sorry". I'm not sorry
            Sophie is a wonderful little girl and I won't trade her for the
            world.

            3. Since this is a mild form that is only affecting her legs. She
            can't walk or cruise at 18 months and just recently learned how to
            crawl. Are there any other health concerns? If she has an ear
            infection do I need to make the staff caring for her aware of this?

            4. What should I expect from her phyical therapy?


            Thanks again

            Sarah&Sophie
          • Kathy Creswell
            Sarah, CP is NOT genetic. I have a beautiful 15 month old son now who has absolutely no indications of CP. I was very afraid that it would happen again, and
            Message 5 of 15 , Feb 10, 2004
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              Sarah, CP is NOT genetic. I have a beautiful 15 month old son now who has absolutely no indications of CP. I was very afraid that it would happen again, and waited 10 years to have another. I regret letting my fear influence my decision. At best CP can be defined as a congenital malformation or the brain. That is, a malformation of the brain that existed at birth, and not caused by the birthing process. Even when a mother has received proper prenatal care and strictly followed their Dr.s orders these malformations may still occur. There is absolutely nothing that could have been done differently to change the outcome of your daughter's CP. Causes of congenital problems are usually unknown but the developing brain of the fetus can be affected by many factors.
              You made me smile when you said you "were not sorry". You have the exact attitude that is required in dealing with people who have no idea what you are talking about. Until you have specifics there is no reason to tell anyone. It is human nature to misunderstand any condition that affects an infant. With so many genetic abnormalities that exist, I found that most were quick to assume the worst and first to assume it was something that occured because of our genetic makeup. That is unequivocally NOT true. I've learned to deal with some compassionately, some I correct and answer questions, some I smile and nod and laugh later. If the CP is only affecting your daughter's legs, it sounds as though it will be defined as diplegia, or predominately affecting both legs. It is essential to receive guidance in what types of therapy may most benefit your child. My Zachary has received multiple services from the time of his diagnosis at three months old. There is nothing to expect from
              the PT as each child's services are completely and extremely individual. You may want to research other options in therapy to see if there is an alternative therapy you wish to try as well. As far as additional medical concerns, it is always important for any doctor to know that your child is diagnosed with CP. Although I have found some doctors to even be uneducated in what that means for the child. My son gets frequent respiratory illnesses but is is a symptom of his impaired mobility and not "caused" by the CP. He can't use his oral motor skills well, he doesn't eat by mouth, he can't crawl or walk....his immobility causes him to be more susceptible to these infections. He can't move around and be upright to keep the fluids from settling in to his lungs and therefore ultimately causes a cold or infection. Again Sarah, each and every child with CP varies in severity and how they are affected by it. How my child is affaected will vary greatly from how Sophie is affected. I
              will always be glad to correspond with you if I can be of any further help....
              Kathy









              I have a few more questions I would like to throw at you folks since
              it will be at least a couple of more days till I can talk to the
              Pediatrician again.

              1. Is this genetic? This is my big question since my husband and I
              were thinking about having 1 more baby.

              2. How do you deal with people? So far I've only told two close
              friends and my family. All I hear is "I'm so sorry". I'm not sorry
              Sophie is a wonderful little girl and I won't trade her for the
              world.

              3. Since this is a mild form that is only affecting her legs. She
              can't walk or cruise at 18 months and just recently learned how to
              crawl. Are there any other health concerns? If she has an ear
              infection do I need to make the staff caring for her aware of this?

              4. What should I expect from her phyical therapy?


              Thanks again

              Sarah&Sophie


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            • Curt & Kim
              Sarah, To answer your questions. 1) No, CP is not genetic. 2) You deal with people in a way that will be best for YOU. I like to say that my son has cerebral
              Message 6 of 15 , Feb 10, 2004
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                Sarah,

                To answer your questions.

                1) No, CP is not genetic.

                2) You deal with people in a way that will be best for YOU. I like to say
                that my son has cerebral palsy and then I describe his abilities as people
                tend to conjure up ideas in their heads of what their vision of a child with
                CP is like. Every child with CP is different and has different abilities,
                so I feel that others need to know that. But, the most important thing for
                them to know is that Sophie is SOPHIE. Not "just a kid with CP."

                3) Good for Sophie for learning to crawl! Do not give up on her. She will
                go far. It will take a lot longer for her to achieve develomental
                milestones, but encourage her and give her the opportunities to do so. My
                son is 2 1/2 with CP and he commando crawled FOREVER. Then one day he began
                crawling on all fours. I thought he would NEVER do that. Then, he would
                cruise along the furniture but crawl everywhere else (unless he had his
                walker with him). Just this last week, he has begun walking along the
                walls, taking steps between pieces of furniture and is only crawling about
                90% of the time. But, it is not like with a typically developing child.
                Once they learn how to walk, they are all over the place. No, as well as he
                is doing, I imagine that it will be several months before he actually walks
                on his own. His trunk is weak and he has poor balance. But I KNOW he will
                do it. In his own time.

                There is no relation between ear infections and CP. I always make Dr.'s
                etc., aware that my son has CP though, because his movements are slower to
                respond than a typical child. It doesn't really affect his care, but it
                does affect the way they interact with him - more attentive, etc.

                4) A good physical therapist will work on helping her to develop proper
                patterns of movement. I am not sure if your daughter has low tone or high
                tone. A PT may do stretching exercises for her, show you exercises to help
                her to get moving and to strengthen her body. I would hope that your
                daugher could at least receive PT once a week. Are you involved in an early
                intervention program? Every state should have one. It is where therapy
                services are provided to children ages birth to three years old. Ask the
                therapist to give you ONE thing to work on a day with Sophie, on the days
                he/she isn't there. At least in the beginning. Everything is so
                overwhelming, that it was quite difficult for me to do more than that. Has
                Sophie seen an orthopaedist? She will most likely need to do that. They do
                a hip x-ray to rule out any hip problems and they monitor/manage a child's
                tone. Currently, my son wears AFO (AKA: braces) on his feet and ankles.
                They stop just below his knees. He wears them all night and all day. He
                doesn't mind them at all. When he wakes from his afternoon nap we take them
                off until bedtime so that he can feel what it is like to use his feet/ankles
                on his own and to develop good muscle tone/strength. He also has a walker
                that I mentioned and he LOVES it!

                The best Dr. we have seen so far re: CP is a "Developmental Specialist." If
                you can get a referral to one of those, that would be a great idea. He was
                able to really take the time to talk to us about what to expect, given how
                our son presented to him. We also saw a neurologist who really didn't bring
                any new info. to us - just confirmed the diagnosis.

                Above all, LOVE Sophie. Do NOT baby her. Give her confidence and support.
                Cheer her on.

                Hope this helps,

                Kim (mom to Jaxon - 2 1/2, CP, hearing impairment and Brixon - 2 1/2,
                typical)
                -----Original Message-----
                From: cute20_98@... [mailto:cute20_98@...]
                Sent: Tuesday, February 10, 2004 10:12 PM
                To: cerebralpalsyclub@yahoogroups.com
                Subject: Re: [CEREBRAL PALSY CLUB] Introduction More Question


                I have a few more questions I would like to throw at you folks since
                it will be at least a couple of more days till I can talk to the
                Pediatrician again.

                1. Is this genetic? This is my big question since my husband and I
                were thinking about having 1 more baby.

                2. How do you deal with people? So far I've only told two close
                friends and my family. All I hear is "I'm so sorry". I'm not sorry
                Sophie is a wonderful little girl and I won't trade her for the
                world.

                3. Since this is a mild form that is only affecting her legs. She
                can't walk or cruise at 18 months and just recently learned how to
                crawl. Are there any other health concerns? If she has an ear
                infection do I need to make the staff caring for her aware of this?

                4. What should I expect from her phyical therapy?


                Thanks again

                Sarah&Sophie


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              • Stephanie Feenstra
                Sarah, My name is Stephanie and i have an 18 month old son that has mild CP. He is walking and trying to even run, but it took a lot of physical therapy to
                Message 7 of 15 , Feb 11, 2004
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                  Sarah,
                  My name is Stephanie and i have an 18 month old son that has mild CP. He is walking and trying to even run, but it took a lot of physical therapy to get him this far.

                  As far as i know CP is not genetic, you can't pass it on to your children, and just because you have one child with it does not mean you will have more children with CP. This can be scary, trust me i know. I recently found out that i am expecting our third child in Sept. I am so scared that this baby will also have problems, but drs have assured me that CP does not usually strike twise in a family.

                  As far as telling people that can be hard. My family has been a HUGE support system, and so have our friends. I can't tell you how many people Love and Care for Dylan and are always asking me how he is doing, its great to know so many people care. Some people have replied by saying how sorry they are, or how sad it is that Dylan has CP, but i don't care, I know how special Dylan is, and i would not trade him for anything! He is perfect in my eyes!

                  If your daughter has a cold or an ear infection i don't think its nessesary to let the drs know that she has CP. A cold or an ear infection would not be related at all to the CP. If your daughter had siezures, has trouble seeing, has trouble eating, those are problems you would want to tell your dr. about and let them know she has CP.

                  Physical therapy is a great tool for children with CP, i HIGHLY recommend it! When Dylan started P.T. he could not even crawl, after only 6 months of working with him he was starting to walk on his own, it was amazing to see the progress he made. The P.T.s will help your daughter learn how to walk, and help her to streghten he legs. I aways go to his P.T. sessions so that i can see what they are working on and then do those same things with him at home.

                  Good luck with your daughter, i am sure she will be just fine and is so blessed to have such a loving mother.

                  Steph

                  cute20_98@... wrote:
                  I have a few more questions I would like to throw at you folks since
                  it will be at least a couple of more days till I can talk to the
                  Pediatrician again.

                  1. Is this genetic? This is my big question since my husband and I
                  were thinking about having 1 more baby.

                  2. How do you deal with people? So far I've only told two close
                  friends and my family. All I hear is "I'm so sorry". I'm not sorry
                  Sophie is a wonderful little girl and I won't trade her for the
                  world.

                  3. Since this is a mild form that is only affecting her legs. She
                  can't walk or cruise at 18 months and just recently learned how to
                  crawl. Are there any other health concerns? If she has an ear
                  infection do I need to make the staff caring for her aware of this?

                  4. What should I expect from her phyical therapy?


                  Thanks again

                  Sarah&Sophie


                  Yahoo! Groups SponsorADVERTISEMENT


                  ---------------------------------
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                  To visit your group on the web, go to:
                  http://groups.yahoo.com/group/cerebralpalsyclub/

                  To unsubscribe from this group, send an email to:
                  cerebralpalsyclub-unsubscribe@yahoogroups.com

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                  [Non-text portions of this message have been removed]
                • Emily Landon
                  ... I have a friend that i go to school with that has CP and his sister also has CP. __________________________________ Do you Yahoo!? Yahoo! Finance: Get
                  Message 8 of 15 , Feb 12, 2004
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                    --- Stephanie Feenstra <sfeenstra2000@...>
                    wrote:
                    > Sarah,
                    > My name is Stephanie and i have an 18 month old son
                    > that has mild CP. He is walking and trying to even
                    > run, but it took a lot of physical therapy to get
                    > him this far.
                    >
                    > As far as i know CP is not genetic, you can't pass
                    > it on to your children, and just because you have
                    > one child with it does not mean you will have more
                    > children with CP. This can be scary, trust me i
                    > know. I recently found out that i am expecting our
                    > third child in Sept. I am so scared that this baby
                    > will also have problems, but drs have assured me
                    > that CP does not usually strike twise in a family.
                    >
                    > As far as telling people that can be hard. My
                    > family has been a HUGE support system, and so have
                    > our friends. I can't tell you how many people Love
                    > and Care for Dylan and are always asking me how he
                    > is doing, its great to know so many people care.
                    > Some people have replied by saying how sorry they
                    > are, or how sad it is that Dylan has CP, but i don't
                    > care, I know how special Dylan is, and i would not
                    > trade him for anything! He is perfect in my eyes!
                    >
                    > If your daughter has a cold or an ear infection i
                    > don't think its nessesary to let the drs know that
                    > she has CP. A cold or an ear infection would not be
                    > related at all to the CP. If your daughter had
                    > siezures, has trouble seeing, has trouble eating,
                    > those are problems you would want to tell your dr.
                    > about and let them know she has CP.
                    >
                    > Physical therapy is a great tool for children with
                    > CP, i HIGHLY recommend it! When Dylan started P.T.
                    > he could not even crawl, after only 6 months of
                    > working with him he was starting to walk on his own,
                    > it was amazing to see the progress he made. The
                    > P.T.s will help your daughter learn how to walk, and
                    > help her to streghten he legs. I aways go to his
                    > P.T. sessions so that i can see what they are
                    > working on and then do those same things with him at
                    > home.
                    >
                    > Good luck with your daughter, i am sure she will be
                    > just fine and is so blessed to have such a loving
                    > mother.
                    >
                    > Steph
                    >
                    > cute20_98@... wrote:
                    > I have a few more questions I would like to throw at
                    > you folks since
                    > it will be at least a couple of more days till I can
                    > talk to the
                    > Pediatrician again.
                    >
                    > 1. Is this genetic? This is my big question since
                    > my husband and I
                    > were thinking about having 1 more baby.
                    >
                    > 2. How do you deal with people? So far I've only
                    > told two close
                    > friends and my family. All I hear is "I'm so
                    > sorry". I'm not sorry
                    > Sophie is a wonderful little girl and I won't trade
                    > her for the
                    > world.
                    >
                    > 3. Since this is a mild form that is only affecting
                    > her legs. She
                    > can't walk or cruise at 18 months and just recently
                    > learned how to
                    > crawl. Are there any other health concerns? If she
                    > has an ear
                    > infection do I need to make the staff caring for her
                    > aware of this?
                    >
                    > 4. What should I expect from her phyical therapy?
                    >
                    >
                    > Thanks again
                    >
                    > Sarah&Sophie
                    >
                    >
                    > Yahoo! Groups SponsorADVERTISEMENT
                    >
                    >
                    > ---------------------------------
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                    >
                    > To visit your group on the web, go to:
                    > http://groups.yahoo.com/group/cerebralpalsyclub/
                    >
                    > To unsubscribe from this group, send an email to:
                    > cerebralpalsyclub-unsubscribe@yahoogroups.com
                    >
                    > Your use of Yahoo! Groups is subject to the
                    > Yahoo! Terms of Service.
                    >
                    >
                    >
                    > ---------------------------------
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                    > Yahoo! Finance: Get your refund fast by filing
                    > online
                    >
                    > [Non-text portions of this message have been
                    > removed]
                    >
                    >
                    I have a friend that i go to school with that has CP
                    and his sister also has CP.

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                  • bettieblue2001
                    ... NO!! i have a 4 yo with quad sp cp, and have a 10 month old who is, as i was told by our gp with a huge smile on his face, of absolutely no interest to
                    Message 9 of 15 , Feb 12, 2004
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                      :)) i know uve got alot of replys, heres mine too!!

                      > 1. Is this genetic? This is my big question since my husband and I
                      > were thinking about having 1 more baby.

                      NO!! i have a 4 yo with quad sp cp, and have a 10 month old who is,
                      as i was told by our gp with a huge smile on his face, "of absolutely
                      no interest to the medical profession!!". his lovelly way of saying
                      he was fine.
                      >
                      > 2. How do you deal with people? So far I've only told two close
                      > friends and my family.
                      >
                      it gets easier to talk about it. my daughter has severe cp, so its
                      quite noticeable. my husband and i have different ways of handling
                      it. he tells everyone she has cp, i tell no one, unless they ask of
                      course. i guess he finds it easier to just "put it out there", and
                      let them ask whatever they want to, while i prefer not to make it the
                      first thing i tell people about her. different personalities is all
                      it is. and another thing, sometimes u will find people look at ur
                      girl when u r out and about. please dont assume that they r thinking
                      anything u wouldnt want to hear. i remember when my daughter was
                      about 2, and we were out at a garden show, and there was these 2
                      women sitting close to us that kept looking at her, and talking, then
                      looking back and talking again. i was so upset i was nearly crying,
                      i wanted to scream at them "what are you looking at?????!!!!". my
                      friend was coming back from the food stand, and she passed them, and
                      when she got back she said to me "tania, u should hear those 2 women
                      going on about how pretty lisa is!". they came over before they left
                      and chatted to lisa, went on about how gorgeous she was, what pretty
                      hair she had etc etc, and it left me with a whole new mindset. why
                      should i always assume that when people were looking at my daughter
                      they were thinking something negative? whether that be "oh that poor
                      child", or whatever else. why dont i just think that they are
                      thinking "what a pretty smile she has", or "she is such a sweet
                      looking child", all the things i think about her when i look at her.
                      chances are they are thinking the exact same thing. and i always
                      meet peoples eyes now too when they are looking at her, and smile.
                      they pretty much always smile back. makes life easier to think the
                      best of people, they dont often disapoint me.


                      > 3. Since this is a mild form that is only affecting her legs. She
                      > can't walk or cruise at 18 months and just recently learned how to
                      > crawl. Are there any other health concerns? If she has an ear
                      > infection do I need to make the staff caring for her aware of this?
                      >
                      im not sure. as my daughters cp affects her whole body, she has a
                      few minorish issues. such as a chronic runny nose. i let the health
                      care people know she has cp. people like the dentist etc. i dont
                      like to spring things on people, u will find that even health care
                      professionals dont always have any experience of disabilities, and
                      they can hold the same "fears" of handling etc, as the general
                      population. id tell them if i were u, making sure they knew it was
                      mild. the more info docs etc have, surely the better?? hopefully
                      anyway!! lol


                      > 4. What should I expect from her phyical therapy?

                      lots of stretching, probably some resistance from ur daughter! im
                      sure she will be using a walker and that type of thing in the future,
                      which is wonderful! hope ur physio is great! i love my daughters,
                      she is amazing.
                      >
                      >
                      > hope it helps!
                      tania
                    • Debra Marasco-McNulty
                      Dear Tania aand others, I think after 27 yrs I ve developed a thick skin and has become what we call in our support group as an old war horse . As I read
                      Message 10 of 15 , Feb 12, 2004
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                        Dear Tania aand others,

                        I think after 27 yrs I've developed a thick skin and
                        has become what we call in our support group as an
                        "old war horse". As I read your letter I tried to
                        think of how I eventually handled stares and comments.
                        My son was even rejected by Santa at 15 mos.

                        The only thing I can recommmend is humor and realizing
                        that many come from an uninformed background and maybe
                        by meeting my son there will be a seed planted, or
                        watered if one was planted there before. My son had a
                        strok at 5 1/2 wks old and is about 5'5", 110 lbs,
                        severe visual contractors of his hands and wrists.
                        When children look I say, "big stroller,huh", "
                        doesn't use his hands and muscles like you do, so
                        remember to excercise", " you can touch his hand and
                        it doesn't hurt him and that will let him know that
                        when you say HI you are talking to him". When his
                        trach was noticed and exclaimed over by a teenage boy
                        who was tattooed etc, I said "that's a body piercing,
                        his brother did his tongue and he had to go him one
                        better". My son's stepfather says to young kids
                        skateboarding by," skateboard accident, wasn't wearing
                        a helmet". My son just laughs and smiles.

                        I read books by disabled commedians, i.e. Geri Jewell
                        who has CP. And I have a friend who is a disabled
                        standup commedian,born without arms who bought a fixer
                        upper house, people thought he was crazy because he's
                        not very handy, etc. Also New Mobility Magazine has
                        helped me to lighten up and cope with outside
                        attituds.

                        Hope this helps someone
                        --- bettieblue2001 <no_reply@yahoogroups.com> wrote:
                        > :)) i know uve got alot of replys, heres mine too!!
                        >
                        > > 1. Is this genetic? This is my big question since
                        > my husband and I
                        > > were thinking about having 1 more baby.
                        >
                        > NO!! i have a 4 yo with quad sp cp, and have a 10
                        > month old who is,
                        > as i was told by our gp with a huge smile on his
                        > face, "of absolutely
                        > no interest to the medical profession!!". his
                        > lovelly way of saying
                        > he was fine.
                        > >
                        > > 2. How do you deal with people? So far I've only
                        > told two close
                        > > friends and my family.
                        > >
                        > it gets easier to talk about it. my daughter has
                        > severe cp, so its
                        > quite noticeable. my husband and i have different
                        > ways of handling
                        > it. he tells everyone she has cp, i tell no one,
                        > unless they ask of
                        > course. i guess he finds it easier to just "put it
                        > out there", and
                        > let them ask whatever they want to, while i prefer
                        > not to make it the
                        > first thing i tell people about her. different
                        > personalities is all
                        > it is. and another thing, sometimes u will find
                        > people look at ur
                        > girl when u r out and about. please dont assume
                        > that they r thinking
                        > anything u wouldnt want to hear. i remember when my
                        > daughter was
                        > about 2, and we were out at a garden show, and there
                        > was these 2
                        > women sitting close to us that kept looking at her,
                        > and talking, then
                        > looking back and talking again. i was so upset i
                        > was nearly crying,
                        > i wanted to scream at them "what are you looking
                        > at?????!!!!". my
                        > friend was coming back from the food stand, and she
                        > passed them, and
                        > when she got back she said to me "tania, u should
                        > hear those 2 women
                        > going on about how pretty lisa is!". they came over
                        > before they left
                        > and chatted to lisa, went on about how gorgeous she
                        > was, what pretty
                        > hair she had etc etc, and it left me with a whole
                        > new mindset. why
                        > should i always assume that when people were looking
                        > at my daughter
                        > they were thinking something negative? whether that
                        > be "oh that poor
                        > child", or whatever else. why dont i just think
                        > that they are
                        > thinking "what a pretty smile she has", or "she is
                        > such a sweet
                        > looking child", all the things i think about her
                        > when i look at her.
                        > chances are they are thinking the exact same thing.
                        > and i always
                        > meet peoples eyes now too when they are looking at
                        > her, and smile.
                        > they pretty much always smile back. makes life
                        > easier to think the
                        > best of people, they dont often disapoint me.
                        >
                        >
                        > > 3. Since this is a mild form that is only
                        > affecting her legs. She
                        > > can't walk or cruise at 18 months and just
                        > recently learned how to
                        > > crawl. Are there any other health concerns? If
                        > she has an ear
                        > > infection do I need to make the staff caring for
                        > her aware of this?
                        > >
                        > im not sure. as my daughters cp affects her whole
                        > body, she has a
                        > few minorish issues. such as a chronic runny nose.
                        > i let the health
                        > care people know she has cp. people like the
                        > dentist etc. i dont
                        > like to spring things on people, u will find that
                        > even health care
                        > professionals dont always have any experience of
                        > disabilities, and
                        > they can hold the same "fears" of handling etc, as
                        > the general
                        > population. id tell them if i were u, making sure
                        > they knew it was
                        > mild. the more info docs etc have, surely the
                        > better?? hopefully
                        > anyway!! lol
                        >
                        >
                        > > 4. What should I expect from her phyical therapy?
                        >
                        > lots of stretching, probably some resistance from ur
                        > daughter! im
                        > sure she will be using a walker and that type of
                        > thing in the future,
                        > which is wonderful! hope ur physio is great! i
                        > love my daughters,
                        > she is amazing.
                        > >
                        > >
                        > > hope it helps!
                        > tania
                        >
                        >


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                      • beckiestaley
                        Hello, I have been lurking for the past couple of days, getting my feel around the various lists I joined for support. I m writing this to introduce myself,
                        Message 11 of 15 , Jun 19, 2004
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                          Hello,

                          I have been 'lurking' for the past couple of days, getting my feel
                          around the various lists I joined for support. I'm writing this to
                          introduce myself, and will be sending it to the appropriate lists
                          seperately, so you may end up seeing this more than once :)

                          My name is Beckie and I am the grandmother to twin boys, Gideon and
                          Elijah who are 13 months old (PRAISE GOD). You see, they were born
                          way too soon, at 26 weeks.

                          Gideon weighed 2 pounds, 9 ounces at birth. He had a hole in his
                          intestines that had to be repaired, which required 2 surgeries. He
                          also had to have a hernia surgery, where they also decided to take
                          out his appendix at the same time. He also had to have eye surgery
                          for ROP. He had a level IV brain bleed that resolved itself. All in
                          all he is doing quite well. He's saying a few words, can shake his
                          head 'no' and stands/walks with assistance.

                          Elijah weighed 1 pound 13 ounces at birth. We almost lost him so
                          many times I've lost count. The first time was at birth. His cord
                          came out first, which initiated an emergency c-section. He had a
                          level IV brain bleed that did not resolve itself, and consequently
                          caused brain damage to the right side of the brain. He is deaf in
                          the right ear. He has some vision problems but the doctors are
                          waiting to see if glasses should be prescribed or not. He has
                          a 'cyst' on the brain and a MRI scheduled for July 27th. Recently
                          we were told he had Cerebral Palsy, but it hasn't been 'classified'
                          as to what type. In fact no one has said much, other than cp kids
                          will have long term treatments that will change as his needs do.
                          He's also on seizure medication because the EEG shows abnormal
                          activity, but we have not noticed any seizures ourselves, but we
                          have been told that we may not notice them since there are various
                          forms of seizures.

                          At 13 months, he still cannot sit up. He has no motor control over
                          holding his head up. He can raise it but it's like a newborn child,
                          wobbly with no control. He has never adapted to drinking from a
                          bottle and is being tube fed with a mickey button. For a while I had
                          concerns because he would not interact with others. It's like he's
                          in his own little world alot. He is just now starting to vocalize
                          more, making sounds and laughing. Which this may be due to the
                          hearing loss, I'm not sure.

                          It's been a roller coaster ride, and I'm sure I'm leaving something
                          out. Elijah spent the first 4 months of his life in NICU. At one
                          time they wanted my daughter to sign DNR papers, stating that Elijah
                          would basically be a vegetable and 'never know love'. Well Becca
                          (my daughter) felt in her heart it wasn't time to let go. She told
                          them to give him 48 more hours and if he did not stabalize she would
                          consider it. Needless to say, he improved and that was the best
                          decision she ever made.

                          I am assisting in raising the boys, Becca and her husband Adrian
                          live with me, but they both work full time, working nights. So I
                          tend to the boys during the days so the parents can sleep.

                          I have alot of questions and concerns, but will address them at a
                          later time. This was supposed to be a short introduction ....ooops.

                          I have already learned a lot by reading the lists, so I know I will
                          learn more.

                          Beckie
                        • Jale
                          Hello all! just joined the group and am looking forward to meeting people! I have twin daughters, Riley and Rachel, who are 10 months old. Both have suspected
                          Message 12 of 15 , Jun 19, 2004
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                            Hello all! just joined the group and am looking forward to meeting
                            people!
                            I have twin daughters, Riley and Rachel, who are 10 months old. Both
                            have suspected CP and were born with CMV. Both have been enrolled in
                            EI since the very beginning and we have been so excited to see their
                            progress in therapy!
                            Riley functions at about a 7 month level and is rolling all over and
                            starting to get on her knees. However, it looks interesting because
                            of her high tone and left side SUPER high tone...her hands are
                            opening more thanks to hand splints and I think she's figuring out
                            that shes supposed to grab the cheerios on her high chair tray and
                            get them to her mouth! :P Little victories are good.
                            Rachel, however, functions at about a 2 month level...she
                            varied...she'll laugh and squawk but motor-wise, she's not doing
                            much. I see her legs make movements sometimes that look like
                            stepping and I think is that positive? but she's so high tone in her
                            shoulders and arms at times...and her head flops...
                            Either way, I was excited to see another set of twins, Becky! And
                            very excited to hear from everyone else and meet the group!
                            Thanks again!!!
                            Janelle
                            www.rileyandrachel.com
                          • Debra Marasco-McNulty
                            I have written this before on this website, but since you are new, I will post again because it is such a great resource. There is a magazine called
                            Message 13 of 15 , Jun 19, 2004
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                              I have written this before on this website, but since
                              you are new, I will post again because it is such a
                              great resource. There is a magazine called
                              Exceptional Parent and they have a website also for
                              posting questions and answers. The articles are an
                              encouragement and the ads show many items of interest.

                              Where do you live ? and welcome to the group.

                              Debra M-Mc



                              --- beckiestaley <beckiestaley@...> wrote:
                              > Hello,
                              >
                              > I have been 'lurking' for the past couple of days,
                              > getting my feel
                              > around the various lists I joined for support. I'm
                              > writing this to
                              > introduce myself, and will be sending it to the
                              > appropriate lists
                              > seperately, so you may end up seeing this more than
                              > once :)
                              >
                              > My name is Beckie and I am the grandmother to twin
                              > boys, Gideon and
                              > Elijah who are 13 months old (PRAISE GOD). You
                              > see, they were born
                              > way too soon, at 26 weeks.
                              >
                              > Gideon weighed 2 pounds, 9 ounces at birth. He had a
                              > hole in his
                              > intestines that had to be repaired, which required 2
                              > surgeries. He
                              > also had to have a hernia surgery, where they also
                              > decided to take
                              > out his appendix at the same time. He also had to
                              > have eye surgery
                              > for ROP. He had a level IV brain bleed that resolved
                              > itself. All in
                              > all he is doing quite well. He's saying a few words,
                              > can shake his
                              > head 'no' and stands/walks with assistance.
                              >
                              > Elijah weighed 1 pound 13 ounces at birth. We almost
                              > lost him so
                              > many times I've lost count. The first time was at
                              > birth. His cord
                              > came out first, which initiated an emergency
                              > c-section. He had a
                              > level IV brain bleed that did not resolve itself,
                              > and consequently
                              > caused brain damage to the right side of the brain.
                              > He is deaf in
                              > the right ear. He has some vision problems but the
                              > doctors are
                              > waiting to see if glasses should be prescribed or
                              > not. He has
                              > a 'cyst' on the brain and a MRI scheduled for July
                              > 27th. Recently
                              > we were told he had Cerebral Palsy, but it hasn't
                              > been 'classified'
                              > as to what type. In fact no one has said much, other
                              > than cp kids
                              > will have long term treatments that will change as
                              > his needs do.
                              > He's also on seizure medication because the EEG
                              > shows abnormal
                              > activity, but we have not noticed any seizures
                              > ourselves, but we
                              > have been told that we may not notice them since
                              > there are various
                              > forms of seizures.
                              >
                              > At 13 months, he still cannot sit up. He has no
                              > motor control over
                              > holding his head up. He can raise it but it's like
                              > a newborn child,
                              > wobbly with no control. He has never adapted to
                              > drinking from a
                              > bottle and is being tube fed with a mickey button.
                              > For a while I had
                              > concerns because he would not interact with others.
                              > It's like he's
                              > in his own little world alot. He is just now
                              > starting to vocalize
                              > more, making sounds and laughing. Which this may be
                              > due to the
                              > hearing loss, I'm not sure.
                              >
                              > It's been a roller coaster ride, and I'm sure I'm
                              > leaving something
                              > out. Elijah spent the first 4 months of his life in
                              > NICU. At one
                              > time they wanted my daughter to sign DNR papers,
                              > stating that Elijah
                              > would basically be a vegetable and 'never know
                              > love'. Well Becca
                              > (my daughter) felt in her heart it wasn't time to
                              > let go. She told
                              > them to give him 48 more hours and if he did not
                              > stabalize she would
                              > consider it. Needless to say, he improved and that
                              > was the best
                              > decision she ever made.
                              >
                              > I am assisting in raising the boys, Becca and her
                              > husband Adrian
                              > live with me, but they both work full time, working
                              > nights. So I
                              > tend to the boys during the days so the parents can
                              > sleep.
                              >
                              > I have alot of questions and concerns, but will
                              > address them at a
                              > later time. This was supposed to be a short
                              > introduction ....ooops.
                              >
                              > I have already learned a lot by reading the lists,
                              > so I know I will
                              > learn more.
                              >
                              > Beckie
                              >
                              >
                            • beckie Staley
                              Thanks, I ll definately check into it. We live in Houston Texas. Had planned to move to the country, but changed our minds when we discovered we need to be
                              Message 14 of 15 , Jun 20, 2004
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                                Thanks, I'll definately check into it.

                                We live in Houston Texas. Had planned to move to the country, but changed our minds when we discovered we need to be close to a major medical center. Not too many regrets there :)

                                Beckie

                                Debra Marasco-McNulty <debraphp@...> wrote:
                                I have written this before on this website, but since
                                you are new, I will post again because it is such a
                                great resource. There is a magazine called
                                Exceptional Parent and they have a website also for
                                posting questions and answers. The articles are an
                                encouragement and the ads show many items of interest.

                                Where do you live ? and welcome to the group.

                                Debra M-Mc



                                --- beckiestaley <beckiestaley@...> wrote:
                                > Hello,
                                >
                                > I have been 'lurking' for the past couple of days,
                                > getting my feel
                                > around the various lists I joined for support. I'm
                                > writing this to
                                > introduce myself, and will be sending it to the
                                > appropriate lists
                                > seperately, so you may end up seeing this more than
                                > once :)


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                              • Yvonne Pierre
                                HYH (Have Ya Heard) Online supports the arts... film, art, books and more that s for, by or featuring individuals with special needs such as Down syndrome,
                                Message 15 of 15 , Feb 15, 2007
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                                  HYH (Have Ya Heard) Online supports the arts... film, art, books and
                                  more that's for, by or featuring individuals with special needs such
                                  as Down syndrome, Autism, Cerebral Palsy, MS, etc.

                                  HYH Online was created and designed by Yvonne Pierre (me), a proud
                                  mom of two boys ages 14 and 5. My youngest son was born with Down
                                  syndrome, which is the inspiration behind what I do.

                                  For more information please visit www.hyhonline.com or visit me at
                                  www.myspace.com/hyhonline

                                  Thank you for your support!

                                  Be blessed,

                                  Yvonne Pierre
                                  CEO/Creative Director
                                  Zyonair's Unlimited, LLC
                                  www.zyonair.com
                                  HYH Online
                                  www.hyhonline.com

                                  "Create the change you want to see..."
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