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  • mskelli_3js
    Hello new to the group.....I m in Baytown Tx and my oldest son is 6 1/2 yrs old has CP. He has spastic diplagia and wears AFOs bilaterally. He seems to be
    Message 1 of 19 , Aug 23 3:09 PM
      Hello new to the group.....I'm in Baytown Tx and my oldest son is 6
      1/2 yrs old has CP. He has spastic diplagia and wears AFOs
      bilaterally. He seems to be doing alright in school, he's in the
      1st grade this year. He goes to Shriners hospital in Houston for
      his CP and at yesterday's appointment they put him down for surgery
      to his left leg early next yr. They plan to do a femoral
      derotational osteotomy and a tibia supramalleor osteotomy and he
      will be WC bound for about 8 weeks after the surgery. I was just
      wondering if anyone else has had experience with this surgery so I
      know what to expect. Thank You

      Kelli Ward
    • jenn bartimus
      I have just been in this group for a week or even less.. I feel a little bad.. Everything that I have read makes me think that maybe I have it easy.. My little
      Message 2 of 19 , Aug 24 11:06 AM
        I have just been in this group for a week or even less.. I feel a little bad.. Everything that I have read makes me think that maybe I have it easy.. My little girl who is 8 is on meds for siezures but I had not seen any for awhile until It got hot this year.. I would really like to help even if the only thing that I can do is talk to you all and let you release everything on your minds.. She has not been diagnosed with CP but from what we read about 2 weeks ago I think that might be it.. She walks doesnt talk much and when she does most cannot understand her.. I have found out that there is far more to this CP than I thought and Sam may just be mild very mild if that.. I dont know maybe im just venting
        jenn
        mskelli_3js wrote:Hello new to the group.....I'm in Baytown Tx and my oldest son is 6
        1/2 yrs old has CP. He has spastic diplagia and wears AFOs
        bilaterally. He seems to be doing alright in school, he's in the
        1st grade this year. He goes to Shriners hospital in Houston for
        his CP and at yesterday's appointment they put him down for surgery
        to his left leg early next yr. They plan to do a femoral
        derotational osteotomy and a tibia supramalleor osteotomy and he
        will be WC bound for about 8 weeks after the surgery. I was just
        wondering if anyone else has had experience with this surgery so I
        know what to expect. Thank You

        Kelli Ward



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      • bettieblue2001
        hi jenn! dont feel bad - i dont think parents of any kids have it very easy!! lol i think this must be a parenting rule or something!! hahaha!!! welcome to
        Message 3 of 19 , Aug 25 4:36 PM
          hi jenn!
          dont feel bad - i dont think parents of any kids have it very easy!!
          lol i think this must be a parenting rule or something!! hahaha!!!
          welcome to the group - and venting is a great thing to do - i do it
          often, and it always helps me see things clearer after i do!!
          my daughter is 2 and a bit, with quad cp. she had epilspy until she
          was 1 and a half, they were absences tho - she just drifted off
          somewhere - but she seems to have grown out of them, and hasnt had
          medication since christmas, which is great - getting that tegretol
          down her throat wasnt much fun! lol what do the doctors put sams
          speech down to? have they diagnosed anything? in our experience
          they were not very keen to give us a diagnosis - i think we said
          cerebral palsy before they did! not that i ever pushed them to tell
          me - i just wanted to know about her health, that she would be
          healthy - the rest we can work out as we go!! and we see a great
          group of therapists at our cerebral palsy association, and she is
          making great progress!! so its all good!! patitence is i think the
          biggest thing ive learnt, and thank god, coz its needed!!
          take care jenn!
          tania
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        • jenn bartimus
          Bettie Hiya I will agree with you on some level that parents of any kids have it tough but I had Sam first so having the normal typical child second made me
          Message 4 of 19 , Aug 26 11:00 AM
            Bettie
            Hiya
            I will agree with you on some level that parents of any kids have it tough but I had Sam first so having the normal typical child second made me what him to grow up fast.. Now my 7 year old acts 3 or even 4 years older than he is and sometimes acts as an adult would.. He has his moments and he is hyperactive...
            Sam started seeing therapist for speech, and physical at the age of 1 or even before.. The parents as Teachers lady that came at the time to see and visit.. Its a program for kids under the age of 3.. She was not rolling over when she was supposed to.. She hardly started talking until she was about 3... Same with walking... The nuerologist never did suggest anything but a developmental delay and siezure disorder. He was a dumb doc though.. I found a better one and hopefully when we go to him in October he will be able to answer our questions a little more than the last...
            Sam had a lot of those siezures where she would just daze off but the one that made me realize she was having them at all made her shake so bad that even I was in shock when it happened.. Here we have a 15 month old in her walker still cause she cant walk and she is shaking so bad that she throws up all over the place.. I didnt know what to do and to have a doc with no personality.. was worse. She is still on meds for them only because the last time that I tried taking her off the meds she started having them again.. She takes pills now with no problem its the capsules that she hates. Not sure about where the docs are putting her at but according to the schools who did her IEP this year just before summer Sam is at the level anywhere from 1 year to 3 on most things. and shes 8.
            I do thank god. I probably wouldnt if my mother hadnt been there for me when she started having these problems.. I had no Idea what to do and my ex was so drugged out that I wasnt asking his advice on anything.. her first meds that she got he tried to steal from me after I moved out of his house.
            Im here most of the time thanx for listening.. Im in Missouri
            Jenn
            bettieblue2001 wrote:hi jenn!
            dont feel bad - i dont think parents of any kids have it very easy!! lol i think this must be a parenting rule or something!! hahaha!!!
            welcome to the group - and venting is a great thing to do - i do it often, and it always helps me see things clearer after i do!! my daughter is 2 and a bit, with quad cp. she had epilspy until she was 1 and a half, they were absences tho - she just drifted off somewhere - but she seems to have grown out of them, and hasnt had medication since christmas, which is great - getting that tegretol down her throat wasnt much fun! lol what do the doctors put sams speech down to? have they diagnosed anything? in our experience they were not very keen to give us a diagnosis - i think we said cerebral palsy before they did! not that i ever pushed them to tell me - i just wanted to know about her health, that she would be
            healthy - the rest we can work out as we go!! and we see a great group of therapists at our cerebral palsy association, and she is making great progress!! so its all good!! patitence is i think the
            biggest thing ive learnt, and thank god, coz its needed!!
            take care jenn!
            tania
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          • bettieblue2001
            ... it tough but I had Sam first so having the normal typical child second made me what him to grow up fast.. Now my 7 year old acts 3 or even 4 years older
            Message 5 of 19 , Aug 26 4:31 PM
              --- In cerebralpalsyclub@y..., jenn bartimus <twbart38@y...> wrote:
              >
              > Bettie
              > Hiya
              > I will agree with you on some level that parents of any kids have
              it tough but I had Sam first so having the normal typical child
              second made me what him to grow up fast.. Now my 7 year old acts 3 or
              even 4 years older than he is and sometimes acts as an adult would..
              He has his moments and he is hyperactive...
              > Sam started seeing therapist for speech, and physical at the age of
              1 or even before.. The parents as Teachers lady that came at the time
              to see and visit.. Its a program for kids under the age of 3.. She
              was not rolling over when she was supposed to.. She hardly started
              talking until she was about 3... Same with walking... The nuerologist
              never did suggest anything but a developmental delay and siezure
              disorder. He was a dumb doc though.. I found a better one and
              hopefully when we go to him in October he will be able to answer our
              questions a little more than the last...
              > Sam had a lot of those siezures where she would just daze off but
              the one that made me realize she was having them at all made her
              shake so bad that even I was in shock when it happened.. Here we have
              a 15 month old in her walker still cause she cant walk and she is
              shaking so bad that she throws up all over the place.. I didnt know
              what to do and to have a doc with no personality.. was worse. She is
              still on meds for them only because the last time that I tried taking
              her off the meds she started having them again.. She takes pills now
              with no problem its the capsules that she hates. Not sure about
              where the docs are putting her at but according to the schools who
              did her IEP this year just before summer Sam is at the level anywhere
              from 1 year to 3 on most things. and shes 8.
              > I do thank god. I probably wouldnt if my mother hadnt been there
              for me when she started having these problems.. I had no Idea what to
              do and my ex was so drugged out that I wasnt asking his advice on
              anything.. her first meds that she got he tried to steal from me
              after I moved out of his house.
              > Im here most of the time thanx for listening.. Im in Missouri
              > Jenn

              hi again jenn!
              sounds like u guys have had it hard with ur doc. i think im getting
              less time for them as the time goes on - unless its the ones like
              ortho that have alot of experience with cp. i would have missed
              lisas seizers too, luckily a physio picked them up when she was
              really young and we got into neuro really quickly. mums r great
              arent they! id be lost without mine i think! shes such a support,
              always positive thinking. i remember the term "global developmental
              delay" being used a bit when lisa was younger - it seemed like a
              silly term that could mean anything!! lol when the term cp came up
              - i was happy, at least we had an idea of where we were heading! im
              in perth, in western austraila, quite far from u unfortunately!!
              have a really great day over there!!!
              tania
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            • Shannon
              I have a beautiful 12-year old daughter who is TMI and has mild CP. We just moved from a large city to a small town and finding fellowship with other parents
              Message 6 of 19 , Sep 28, 2002
                I have a beautiful 12-year old daughter who is TMI and has mild CP. We just moved from a large city to a small town and finding fellowship with other parents of disabled children is proving difficult. We are also considering a PPI program for our 5-year old who may be EI (who else on here hates the label game?).

                The special ed program is a good one, but we are new to the area and the county is sparsely populated with the kids in Katie's class being spread out throughout the school district.

                Hope to find much needed support here!

                In Him, Shannon


                "...and God shall wipe every tear from their eyes." Rev 7:17


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              • Amy
                Hello, I just joined this group and Im so happy that I found a support group..My Daughter Alexis is 3 with Cerebral Palsy..She doesn t wat or talk, and can t
                Message 7 of 19 , Jul 29, 2003
                  Hello,
                  I just joined this group and Im so happy that I found a support
                  group..My Daughter Alexis is 3 with Cerebral Palsy..She doesn't wat
                  or talk, and can't see, also she has seriuor disorder. But she is a
                  blessing from God! Her CP was caused from a rare brain infection that
                  they never found the couse of, they think its becasue my water broke
                  the day before I had her, I want to the hopital but I wasn't haveing
                  contrations so they sent me home.I ended up haveiong her the next day.
                  Im so thankful for Alexis!She is a happy kid always smiling. I can't
                  wait to get to know you all!
                  Amy
                • debra Marasco-McNulty
                  Amy, My son Jason is 26 yrs old now and I feel the same way. Though my life has taken different turns from what I thought it would and as a single mom with 2
                  Message 8 of 19 , Jul 30, 2003
                    Amy,

                    My son Jason is 26 yrs old now and I feel the same
                    way. Though my life has taken different turns from
                    what I thought it would and as a single mom with 2
                    small children (Jason's brother is 13 mos. older than
                    Jason) I found more doors open than closed. Each
                    learning situation made us stronger and we were always
                    blessed with contacts and friends at every appropriate
                    time. People come to me now years later and tell me
                    how Jason has blessed their life. He is spastic
                    quadraplegic and has difficulty forming our words, he
                    is beginning to come up with HI, I call it Jason talk
                    and it is very expressive. Like a mom that knows her
                    baby's cry and what it means.

                    I have a job that I didn't know would exist, I have an
                    AA degree and am gradually working toward a BA, but
                    that is not high on my priority because I am finding
                    so many opportunities for learning that I would not
                    find at a school. I've learned to think
                    out-of-the-box in order to make our lives work; and it
                    has benefited others.

                    He is unable to walk or sit up. Has had several
                    surgaries, mainly with the thought of making him
                    comfortable and enhanceing his quality of life.

                    Like you, I am blessed by Jason's smile which can
                    light up a room. There is a book out that I am
                    looking for a copy of titled "She smiles to say yes",
                    About a woman unable to communicate, and through the
                    observance and work of careproviders etc., writes a
                    book, lives in a supportive living arrangement with
                    her husband. Please check into assistive
                    communication devices for your daughter. I have
                    started late with Jason, because alot of it did not
                    exist when he was young. But we're working to catch
                    up.

                    God has blessed us with physical angels that we can
                    see, feel, communicate with, and love.

                    Say HI to Alexis for me,

                    Debra M-Mc in Paso Robles California

                    --- Amy <onefish768@...> wrote:
                    > Hello,
                    > I just joined this group and Im so happy that I
                    > found a support
                    > group..My Daughter Alexis is 3 with Cerebral
                    > Palsy..She doesn't wat
                    > or talk, and can't see, also she has seriuor
                    > disorder. But she is a
                    > blessing from God! Her CP was caused from a rare
                    > brain infection that
                    > they never found the couse of, they think its
                    > becasue my water broke
                    > the day before I had her, I want to the hopital but
                    > I wasn't haveing
                    > contrations so they sent me home.I ended up haveiong
                    > her the next day.
                    > Im so thankful for Alexis!She is a happy kid always
                    > smiling. I can't
                    > wait to get to know you all!
                    > Amy
                    >
                    >


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                  • Bab006@aol.com
                    I just joined to learn more about CP and treatments. I am a developmental specialist for WV Birth to Three. I am currently looking for some issues that are
                    Message 9 of 19 , Oct 19, 2003
                      I just joined to learn more about CP and treatments. I am a developmental
                      specialist for WV Birth to Three. I am currently looking for some issues that
                      are usually related to CP.... cortical vision impairment. I work with several
                      infants and toddlers that have CP and CVI and I am always looking for more
                      treatment strategies.

                      Bridget A. Bailey
                      WV
                      Yahoo! Groups : BirthtoThreeSupport
                      Please join if you are a parent or professional interested in networking with
                      others in Early Intervention.

                      Yahoo! Groups : Corticalvisionimpairments
                      Please join if you are interesting in discussing CVI and issues with that
                      diagnosis.


                      [Non-text portions of this message have been removed]
                    • mastdh02
                      HELLO I AM NEW TO THE GROUP, I AM A SINGLE MOTHER OF A CHILD BORN WITH CP, I AM LOOKING TO SPEAK WITH ANY ONE EXPERIENCED ANY ORAL MEDS AND DIFFERENT TYPES OF
                      Message 10 of 19 , Mar 24, 2005
                        HELLO I AM NEW TO THE GROUP, I AM A SINGLE MOTHER OF A CHILD BORN
                        WITH CP, I AM LOOKING TO SPEAK WITH ANY ONE EXPERIENCED ANY ORAL MEDS
                        AND DIFFERENT TYPES OF THERAPY, MALISA
                      • nroach125
                        Hi i am a mother of a 1 year old. and we are told that he may have cp.I was looking on the computer on some info about cp and I found this chat. I look foward
                        Message 11 of 19 , Nov 18, 2005
                          Hi i am a mother of a 1 year old. and we are told that he may have
                          cp.I was looking on the computer on some info about cp and I found
                          this chat. I look foward to talking to all of you.
                        • Nisa
                          hi, My name is Nisa.I am mother of 17 mons old little princess.She has Cp,CVI. developmental delay.Feel free to ask question.Thank you Nisa nroach125
                          Message 12 of 19 , Nov 18, 2005
                            hi,
                            My name is Nisa.I am mother of 17 mons old little princess.She has Cp,CVI. developmental delay.Feel free to ask question.Thank you
                            Nisa

                            nroach125 <nikiroach@...> wrote:
                            Hi i am a mother of a 1 year old. and we are told that he may have
                            cp.I was looking on the computer on some info about cp and I found
                            this chat. I look foward to talking to all of you.





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                          • staci woods
                            Welcom to our club. I have a son who is 2 and has CP. The people here are awesome. It is hard when you are waiting for a diagnoses. I know we suspected my son
                            Message 13 of 19 , Nov 18, 2005
                              Welcom to our club. I have a son who is 2 and has CP. The people here are awesome. It is hard when you are waiting for a diagnoses. I know we suspected my son had it at 9 months but he wasn't diagnosed untill 16 months because it took that long to get in to the neurologist.

                              I'm here if you have questions or need to talk.
                              Staci

                              nroach125 <nikiroach@...> wrote:
                              Hi i am a mother of a 1 year old. and we are told that he may have
                              cp.I was looking on the computer on some info about cp and I found
                              this chat. I look foward to talking to all of you.





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                            • Suzanne
                              Hello. My name is Suzanne. My daughter, Daisy is almost 20 months and we got diagnosed at 1year that she has cp. Is your child rolling over yet, eating right,
                              Message 14 of 19 , Nov 19, 2005
                                Hello. My name is Suzanne. My daughter, Daisy is almost 20 months and
                                we got diagnosed at 1year that she has cp. Is your child rolling over
                                yet, eating right, talking? I'm just trying to help you in any way
                                that I can. Let me know.


                                -- In cerebralpalsyclub@yahoogroups.com, "nroach125" <nikiroach@b...>
                                wrote:
                                >
                                > Hi i am a mother of a 1 year old. and we are told that he may have
                                > cp.I was looking on the computer on some info about cp and I found
                                > this chat. I look foward to talking to all of you.
                                >
                              • Peggy Loftis
                                Hello I have a step-daughter who is 12, has Cerebral Palsey, and is developmentally delayed. It s definitely rough with her at this age since mentally she s
                                Message 15 of 19 , Nov 19, 2005
                                  Hello
                                  I have a step-daughter who is 12, has Cerebral Palsey, and is developmentally delayed. It's definitely rough with her at this age since mentally she's at a 2-3 year level but is smart at some things and we're going through what I see them as terrible 2's (attitude, tantrums). If you have questions ask.

                                  Peggy

                                  Nisa <nisa600@...> wrote:
                                  hi,
                                  My name is Nisa.I am mother of 17 mons old little princess.She has Cp,CVI. developmental delay.Feel free to ask question.Thank you
                                  Nisa

                                  nroach125 <nikiroach@...> wrote:
                                  Hi i am a mother of a 1 year old. and we are told that he may have
                                  cp.I was looking on the computer on some info about cp and I found
                                  this chat. I look foward to talking to all of you.





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                                • SANDRA HUNT
                                  Hi Group, Hope everyone is doing fine, we are doing pretty well, I wanted to know has anyone tried eeg neurofeedback on their child if yes, have you seen
                                  Message 16 of 19 , Nov 27, 2005
                                    Hi Group,

                                    Hope everyone is doing fine, we are doing pretty well, I wanted to know has anyone tried eeg neurofeedback on their child if yes, have you seen results or any improvements, I came across this website www.neuropathways.com and it sounded interesting, and I also came across a website www.and.ca they both sound interesting I will find out more about it, but thought maybe someone has come across it or tried it.

                                    Take Care

                                    Sandra





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                                  • Michelle
                                    Hi , my name is Michelle , I have a 14 year old Daughter , who has CP, seizures , bdp, scoliosis,and alot of other things. She was born at 25 weeks gestation.
                                    Message 17 of 19 , Mar 23, 2006
                                      Hi , my name is Michelle , I have a 14 year old Daughter , who has CP,
                                      seizures , bdp, scoliosis,and alot of other things. She was born at 25
                                      weeks gestation. She is haveing alot of trouble since they put the hard
                                      ware in her back . just like to have someone to talk to that has it
                                      like me.


                                      [Non-text portions of this message have been removed]
                                    • Louisa Makolski
                                      http://www.stdr-tedl.com/hwork55.html [Non-text portions of this message have been removed]
                                      Message 18 of 19 , Apr 22, 2013
                                        http://www.stdr-tedl.com/hwork55.html

                                        [Non-text portions of this message have been removed]
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