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Hi I'm mother of a 3 month old who has cerebral palsy...

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  • cheerygirl05
    I was trying to find someone who could tell me what to expect in the first few years of her life? I am new to all of this and it would be much appreciated if
    Message 1 of 16 , Nov 17, 2005
      I was trying to find someone who could tell me what to expect in the
      first few years of her life? I am new to all of this and it would be
      much appreciated if someone could give me a few pointers on what i
      can do to help her learn...
    • staci woods
      Cheerygirl, The hardest part is in the beginning when you don t know what the future holds for you and your little one. I can give you some brief advise b/c it
      Message 2 of 16 , Nov 18, 2005
        Cheerygirl,
        The hardest part is in the beginning when you don't know what the future holds for you and your little one. I can give you some brief advise b/c it is late here but will write more later. She will need early intervention, and PT(Physical therapy) possibly OT (Occupational therapy). You will see these people as well as a neurologist. She made need more specialist depending on how involved she is.

        Cp can me mild or severe. Right now I would advise take it one day at a time and seek all the support you can. I was constantly calling family when I first found out and thats what got me through it. The people here are great too.

        Buy Books about CP. I have a couple I can recommend but I don't have them on me right now. Just let me know if you have any questions.

        Staci Mother of Hunter 2 CP and Zoe

        cheerygirl05 <cheerygirl05@...> wrote:
        I was trying to find someone who could tell me what to expect in the
        first few years of her life? I am new to all of this and it would be
        much appreciated if someone could give me a few pointers on what i
        can do to help her learn...





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      • Howard Esterline
        We did not get a diagnosis of CP until Daisy was a year old, even though she was CP from birth. First steps intervened right away - when Daisy was about 3
        Message 3 of 16 , Nov 18, 2005
          We did not get a diagnosis of CP until Daisy was a year old, even though she was CP from birth. First steps intervened right away - when Daisy was about 3 months. They are probably the most helpful bunch you can find.

          My recommendation is this: measure each milestone as it happens. DO NOT compare or allow any one else to compare your child to the progress of others (except of course for official evals and diagnostics). Your child must be compared to her own progress. The most discouraging thing for us has been looking through Parenting magazines for "milestones" that she should be making... only to discover she is not. Let her make her own milestones. Daisy just began to roll over last month (about 18 months). For us, that was a TREMENDOUS victory.






          Howard Esterline

          Learning Difficulties? Attention Issues? Memory Problems?

          www.LearnToBeSmarter.Com

          Click HERE for An interview with Dr. Ken Gibson about the benefits for ADD and Dyslexia






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        • Nisa
          My daughter 17 mons old has cp.she had brain injury during birth.How did this happen no dr could diagnose.Her diagnosis is venos sinous thrombosis Means clot
          Message 4 of 16 , Nov 18, 2005
            My daughter 17 mons old has cp.she had brain injury during birth.How did this happen no dr could diagnose.Her diagnosis is "venos sinous thrombosis"Means clot in brain during the delivery or after that.She was hospitalized for 28 days right after her birth.Her first yr was very tough.She was so tight could not stretch at all.she looked like an embryo or a bean but with time and therapies and massage she started loosing up.She is very good now.Her response were poor.She has cortical visual impairment too.She could not lift her head and head control was poor which is almost 95% good.She can sit with support very well but needs assistance.Just started rolling over and back.I use benik vest for trunk support and hip helpers for hip support and to keep legs in and straight.Her legs r sort of froggy legs but its better now.We are using stander for her to put wait on her legs.She has made very good improvement since last 4 mons.If you want to ask some thing I would love to answer it.
            Nisa
            mom to gula CP,Hypotonia,CVI.
            cheerygirl05 <cheerygirl05@...> wrote:
            I was trying to find someone who could tell me what to expect in the
            first few years of her life? I am new to all of this and it would be
            much appreciated if someone could give me a few pointers on what i
            can do to help her learn...





            SPONSORED LINKS
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            To unsubscribe from this group, send an email to:
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          • Suzanne Esterline
            Hi Nisa. My daughter is almost 20 months old now. But I was wondering how you went about getting the trunk vest and the hip helpers? That is something daisy
            Message 5 of 16 , Nov 18, 2005
              Hi Nisa. My daughter is almost 20 months old now. But I was wondering how you went about getting the trunk vest and the hip helpers? That is something daisy could really use right now. Please let me know. That would be awesome. Thanks so much. Also, can I ask who paid for the stander? We were just denied from medicaid for it. Now we are going to try through first steps. But they take it back at 3.

              Nisa <nisa600@...> wrote: My daughter 17 mons old has cp.she had brain injury during birth.How did this happen no dr could diagnose.Her diagnosis is "venos sinous thrombosis"Means clot in brain during the delivery or after that.She was hospitalized for 28 days right after her birth.Her first yr was very tough.She was so tight could not stretch at all.she looked like an embryo or a bean but with time and therapies and massage she started loosing up.She is very good now.Her response were poor.She has cortical visual impairment too.She could not lift her head and head control was poor which is almost 95% good.She can sit with support very well but needs assistance.Just started rolling over and back.I use benik vest for trunk support and hip helpers for hip support and to keep legs in and straight.Her legs r sort of froggy legs but its better now.We are using stander for her to put wait on her legs.She has made very good improvement since last 4 mons.If you want to ask some thing
              I would love to answer it.
              Nisa
              mom to gula CP,Hypotonia,CVI.
              cheerygirl05 <cheerygirl05@...> wrote:
              I was trying to find someone who could tell me what to expect in the
              first few years of her life? I am new to all of this and it would be
              much appreciated if someone could give me a few pointers on what i
              can do to help her learn...





              SPONSORED LINKS
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              ---------------------------------
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              ---------------------------------
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            • Gabriela McCann
              Hello Suzanne, My name is Gabriela and I have a 22 month old son, Briar, with CP, Epilepsy, CVI, among other medical problems. I know you didn t ask me but I
              Message 6 of 16 , Nov 18, 2005
                Hello Suzanne,

                My name is Gabriela and I have a 22 month old son, Briar, with CP, Epilepsy, CVI, among other medical problems. I know you didn't ask me but I found hip helpers on the web. They aren't very fancy (at least the one's I ordered); as a matter of fact, they look very simple, something one can do at home. They are made of elastic/stretchy fabric and are sewn right in the middle which prevents the thighs from separating and keeps them close together. Hope this helps, but searh the web for more info. on this item. Also, we have been involved with Early Intervention since my son was 3 months old and the therapy he has been provided with thru EI has been a tremendous help. We recently ordered a stander for him thru his Physical Therapist (she had a friend that worked at an Ortho company) and thankfully my insurance paid some of the cost, but EI picked up the remainder. I don't know if you're family is involved with EI, but maybe you can ask around your area for more info. Hope this
                has helped at least a little......GOOD LUCK!


                Suzanne Esterline <suzanneesterline@...> wrote: Hi Nisa. My daughter is almost 20 months old now. But I was wondering how you went about getting the trunk vest and the hip helpers? That is something daisy could really use right now. Please let me know. That would be awesome. Thanks so much. Also, can I ask who paid for the stander? We were just denied from medicaid for it. Now we are going to try through first steps. But they take it back at 3.




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              • Suzanne Esterline
                Hello Gabriela, It was very helpful. Thank you. I have never heard of EI. What is it? Gabriela McCann wrote: Hello Suzanne, My name is
                Message 7 of 16 , Nov 18, 2005
                  Hello Gabriela,

                  It was very helpful. Thank you. I have never heard of EI. What is it?

                  Gabriela McCann <briarmc2004@...> wrote:
                  Hello Suzanne,

                  My name is Gabriela and I have a 22 month old son, Briar, with CP, Epilepsy, CVI, among other medical problems. I know you didn't ask me but I found hip helpers on the web. They aren't very fancy (at least the one's I ordered); as a matter of fact, they look very simple, something one can do at home. They are made of elastic/stretchy fabric and are sewn right in the middle which prevents the thighs from separating and keeps them close together. Hope this helps, but searh the web for more info. on this item. Also, we have been involved with Early Intervention since my son was 3 months old and the therapy he has been provided with thru EI has been a tremendous help. We recently ordered a stander for him thru his Physical Therapist (she had a friend that worked at an Ortho company) and thankfully my insurance paid some of the cost, but EI picked up the remainder. I don't know if you're family is involved with EI, but maybe you can ask around your area for more info. Hope this
                  has helped at least a little......GOOD LUCK!


                  Suzanne Esterline <suzanneesterline@...> wrote: Hi Nisa. My daughter is almost 20 months old now. But I was wondering how you went about getting the trunk vest and the hip helpers? That is something daisy could really use right now. Please let me know. That would be awesome. Thanks so much. Also, can I ask who paid for the stander? We were just denied from medicaid for it. Now we are going to try through first steps. But they take it back at 3.




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                • Nisa
                  Hi suzzane, I am using trunk vest or the benik vest and hip helpers since 3 mons. Very good results with both. www.hiphelpers.com www.benik.com Her legs were
                  Message 8 of 16 , Nov 18, 2005
                    Hi suzzane,
                    I am using trunk vest or the benik vest and hip helpers since 3 mons. Very good results with both. www.hiphelpers.com
                    www.benik.com

                    Her legs were like frog legs she was used to keep them bended.But with hip helpers she is trying to hold them for 30 sec to 50 sec.Her legs were like knees bended out side like this.<>.now she can hold them better while on floor.(does it make sense) I am not good at explaination sorry.And with the vest she can sit better.Earlier she could not sit at all. her back was rounded.and becasue of her trunk, her head control was poor.but with the vest she is doing very good.Can sit and support her head and look around and reach for toys.can eat better.
                    And stander is also good.Actually I bought it through my insurance .I has Humana ppo plan.stander was $3000.I just paid 245$.hip helper was I think 16 $ and benik vest was 62 $.My insurance refused to pay for hip helpers and benik so i bougt it for her.If you see the results price looks so cheap for both.
                    I hope i answer your every question.If you wanna ask some thing else i will be more happy to answer.
                    Thanks
                    Nisa
                    Suzanne Esterline <suzanneesterline@...> wrote:
                    Hi Nisa. My daughter is almost 20 months old now. But I was wondering how you went about getting the trunk vest and the hip helpers? That is something daisy could really use right now. Please let me know. That would be awesome. Thanks so much. Also, can I ask who paid for the stander? We were just denied from medicaid for it. Now we are going to try through first steps. But they take it back at 3.

                    Nisa <nisa600@...> wrote: My daughter 17 mons old has cp.she had brain injury during birth.How did this happen no dr could diagnose.Her diagnosis is "venos sinous thrombosis"Means clot in brain during the delivery or after that.She was hospitalized for 28 days right after her birth.Her first yr was very tough.She was so tight could not stretch at all.she looked like an embryo or a bean but with time and therapies and massage she started loosing up.She is very good now.Her response were poor.She has cortical visual impairment too.She could not lift her head and head control was poor which is almost 95% good.She can sit with support very well but needs assistance.Just started rolling over and back.I use benik vest for trunk support and hip helpers for hip support and to keep legs in and straight.Her legs r sort of froggy legs but its better now.We are using stander for her to put wait on her legs.She has made very good improvement since last 4 mons.If you want to ask some thing
                    I would love to answer it.
                    Nisa
                    mom to gula CP,Hypotonia,CVI.
                    cheerygirl05 <cheerygirl05@...> wrote:
                    I was trying to find someone who could tell me what to expect in the
                    first few years of her life? I am new to all of this and it would be
                    much appreciated if someone could give me a few pointers on what i
                    can do to help her learn...





                    SPONSORED LINKS
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                    ---------------------------------
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                    Visit your group "cerebralpalsyclub" on the web.

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



                    SPONSORED LINKS
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                    ---------------------------------
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                    Visit your group "cerebralpalsyclub" on the web.

                    To unsubscribe from this group, send an email to:
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                    [Non-text portions of this message have been removed]



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                    ---------------------------------
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                    Visit your group "cerebralpalsyclub" on the web.

                    To unsubscribe from this group, send an email to:
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                    Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


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                  • Nisa
                    Hi Gebriela, My daughter has CVI and Cp with feeding problems.If you dont mind can I ask how is your son doing now.and dealing Cp with CVI. I can not find
                    Message 9 of 16 , Nov 18, 2005
                      Hi Gebriela,
                      My daughter has CVI and Cp with feeding problems.If you dont mind can I ask how is your son doing now.and dealing Cp with CVI. I can not find people with Cp And CVI.
                      My daughter's first yr was very difficult for me.She could not see any thing .Just was able to see from the right eye but very little and at just one angle.Her left eye was almost blind.I started vision therapies when she was 1 yr old.vision therapist is really very good.And now I can see lots of positive changes.She has color preferences red and yellow, her latency is 10 seconds with full good response which was more then 2 mins with minimal response.As vision is getting better she seems like active then before.
                      Nisa

                      Gabriela McCann <briarmc2004@...> wrote:
                      Hello Suzanne,

                      My name is Gabriela and I have a 22 month old son, Briar, with CP, Epilepsy, CVI, among other medical problems. I know you didn't ask me but I found hip helpers on the web. They aren't very fancy (at least the one's I ordered); as a matter of fact, they look very simple, something one can do at home. They are made of elastic/stretchy fabric and are sewn right in the middle which prevents the thighs from separating and keeps them close together. Hope this helps, but searh the web for more info. on this item. Also, we have been involved with Early Intervention since my son was 3 months old and the therapy he has been provided with thru EI has been a tremendous help. We recently ordered a stander for him thru his Physical Therapist (she had a friend that worked at an Ortho company) and thankfully my insurance paid some of the cost, but EI picked up the remainder. I don't know if you're family is involved with EI, but maybe you can ask around your area for more info. Hope this
                      has helped at least a little......GOOD LUCK!


                      Suzanne Esterline <suzanneesterline@...> wrote: Hi Nisa. My daughter is almost 20 months old now. But I was wondering how you went about getting the trunk vest and the hip helpers? That is something daisy could really use right now. Please let me know. That would be awesome. Thanks so much. Also, can I ask who paid for the stander? We were just denied from medicaid for it. Now we are going to try through first steps. But they take it back at 3.




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



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                    • staci woods
                      I think you asked what EI is and I don t mean to butt in but...It is Early intervention service. It is from birth to 3 years after that the school systems take
                      Message 10 of 16 , Nov 18, 2005
                        I think you asked what EI is and I don't mean to butt in but...It is Early intervention service. It is from birth to 3 years after that the school systems take over. They provide services that will help your babies development. And depending on income it can be a free service.
                        Staci Mother of Hunter 2 CP and Zoe

                        cheerygirl05 <cheerygirl05@...> wrote:
                        I was trying to find someone who could tell me what to expect in the
                        first few years of her life? I am new to all of this and it would be
                        much appreciated if someone could give me a few pointers on what i
                        can do to help her learn...





                        SPONSORED LINKS
                        Cerebral palsy lawyer Cerebral palsy attorney Cerebral palsy Family intervention Family rafting trip Family vacations

                        ---------------------------------
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                        To unsubscribe from this group, send an email to:
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                      • Nisa
                        In some states It is called EI early intervention and in some states it is called ECI.Early childhood Intervention.They provide services like physical
                        Message 11 of 16 , Nov 18, 2005
                          In some states It is called EI early intervention and in some states it is called ECI.Early childhood Intervention.They provide services like physical therapist,occupational therapist,Speech therapist,Developmental therapist,and vision therapist ,nurse and nutritionist.All those therapist come to your home to help you and your child.Good thing about ECI or EI is it is almost free.But it depends on your income .They charge you very minimal fees monthly based on your income.But it very very cheaper then what you pay to your therapist through insurance.and good thing about ECI is they come to your home.All therapist will come to your home weekly.you do not have to go any where.Even they provide equipment too.Talk to your Dr and ask about ECI.I live in Tx.I do not pay any thing to ECI.and I am taking all the services I mentioned above.earlier I was in Chicago and i was paying minimal payment for O.T and P.T.ECI provides services from birth till 3 yr of age.and after that School
                          systems takes their place.
                          If you have any question feel free to ask.
                          Nisa


                          Suzanne Esterline <suzanneesterline@...> wrote:
                          Hello Gabriela,

                          It was very helpful. Thank you. I have never heard of EI. What is it?

                          Gabriela McCann <briarmc2004@...> wrote:
                          Hello Suzanne,

                          My name is Gabriela and I have a 22 month old son, Briar, with CP, Epilepsy, CVI, among other medical problems. I know you didn't ask me but I found hip helpers on the web. They aren't very fancy (at least the one's I ordered); as a matter of fact, they look very simple, something one can do at home. They are made of elastic/stretchy fabric and are sewn right in the middle which prevents the thighs from separating and keeps them close together. Hope this helps, but searh the web for more info. on this item. Also, we have been involved with Early Intervention since my son was 3 months old and the therapy he has been provided with thru EI has been a tremendous help. We recently ordered a stander for him thru his Physical Therapist (she had a friend that worked at an Ortho company) and thankfully my insurance paid some of the cost, but EI picked up the remainder. I don't know if you're family is involved with EI, but maybe you can ask around your area for more info. Hope this
                          has helped at least a little......GOOD LUCK!


                          Suzanne Esterline <suzanneesterline@...> wrote: Hi Nisa. My daughter is almost 20 months old now. But I was wondering how you went about getting the trunk vest and the hip helpers? That is something daisy could really use right now. Please let me know. That would be awesome. Thanks so much. Also, can I ask who paid for the stander? We were just denied from medicaid for it. Now we are going to try through first steps. But they take it back at 3.




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                        • Gabriela McCann
                          Hello Suzanne, Early Intervention is a program available for special needs/disabled children, normally from birth to 3 years of age. I don t know where you
                          Message 12 of 16 , Nov 19, 2005
                            Hello Suzanne,

                            Early Intervention is a program available for special needs/disabled children, normally from birth to 3 years of age. I don't know where you live, but I live in NY and this program is funded by the state (state taxes are good at work here!) When I was living in TX, I had to go thru Easter Seals in order to get to EI and they were helpful as well. TX doesn't have state taxes so depending on your income, they may ask for a fee, but normally they don't. I don't know where Easter Seals EI obtain their funds from, but I know they ask for donations a lot. Fortunately, I never paid a dime and my son has received therapies for a long time. I feel we have been blessed this way. You may be able to find info. on the web on EI in your state. Hope this helps...GOD BLESS!

                            Suzanne Esterline <suzanneesterline@...> wrote: Hello Gabriela,

                            It was very helpful. Thank you. I have never heard of EI. What is it?

                            Gabriela McCann <briarmc2004@...> wrote:
                            Hello Suzanne,

                            My name is Gabriela and I have a 22 month old son, Briar, with CP, Epilepsy, CVI, among other medical problems. I know you didn't ask me but I found hip helpers on the web. They aren't very fancy (at least the one's I ordered); as a matter of fact, they look very simple, something one can do at home. They are made of elastic/stretchy fabric and are sewn right in the middle which prevents the thighs from separating and keeps them close together. Hope this helps, but searh the web for more info. on this item. Also, we have been involved with Early Intervention since my son was 3 months old and the therapy he has been provided with thru EI has been a tremendous help. We recently ordered a stander for him thru his Physical Therapist (she had a friend that worked at an Ortho company) and thankfully my insurance paid some of the cost, but EI picked up the remainder. I don't know if you're family is involved with EI, but maybe you can ask around your area for more info. Hope this
                            has helped at least a little......GOOD LUCK!


                            Suzanne Esterline <suzanneesterline@...> wrote: Hi Nisa. My daughter is almost 20 months old now. But I was wondering how you went about getting the trunk vest and the hip helpers? That is something daisy could really use right now. Please let me know. That would be awesome. Thanks so much. Also, can I ask who paid for the stander? We were just denied from medicaid for it. Now we are going to try through first steps. But they take it back at 3.




                            ---------------------------------
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                          • Gabriela McCann
                            Hi Nisa, My son is near sighted and has an astigmatizm in one eye. He also has a lazy eye (left one) and used to always move his head to the right (I guess he
                            Message 13 of 16 , Nov 19, 2005
                              Hi Nisa,
                              My son is near sighted and has an astigmatizm in one eye. He also has a lazy eye (left one) and used to always move his head to the right (I guess he could see better with that one.) In May of this year, I patched his better eye (right eye) to make his left eye stronger, as per his Pediatric Opthomologist. This was done for about 3 weeks. I believe it helped, but now he tends to look to the left more. It's hard to make him look straight ahead. He receives Vision Therapy twice a week and it has helped. His favorite color is red and he likes pom poms and loves his mobile. He's already in a toddler bed (twin) and somehow I managed to put it up for him because he loves it. He can see better when he's laying down on his back, lookin up. We're trying to make him sit or stand and look up, down and straight ahead but it's been difficult. He can't move his arms or hands (he's so stiff) due to his high muscle tone so it's hard for him to actually look at something and not be able
                              to reach, touch or grab. We work with him a lot. I put toys, books, fabrics, stuffed animals (different textures) in front of him (at his reach) and talk to him, encourage him to touch and look.

                              I believe he's done great progress, but with his seizure medication, it's difficult for him to be very active and aware. He gets tired fast and becomes lethargic. We've tried so many seizure medications and none have been able to completely control his seizures, but I can sincerely say that lately I've seen a wonderful change in him. I think we're getting closer to reaching a good dosage on his meds (he takes Keppra, Phenobarbital & Topamax for seizures; Prevacid for Acid Reflux and Macrodantin to prevent Kindney Reflux.) So as you can see, it's a tough road for my son but he's doing everything he can. He's a fighter and I can't believe how strong he is. He gives me strength and energy. I look at him and see how much he wants to do things, to move, to touch, etc. He gets so excited. He's just so wonderful. It takes a lot of time and patience and believe me, before my son I thought I had none! As far as feeding goes, he does have acid reflux, but the prevacid has helped
                              tremendously. He is now eating stage 3 strained foods and sometimes I crush a cracker in his food (if it's too watery) to make it thicker. I move his jaw and help him chew. He's doing a pretty good job himself. I go slow and talk to him a lot. I say things like, "ok Bri, it's time to eat, here comes the spoon....hhhmmmmm it's yummy." I touch his lips softly with the spoon because he'll startle if I don't. He still startles a little, but he's okay. He starts moving his lips and mouth and realizes there's food there and then it's easy. Briar also receives Speech Therapy and goes to the Feeding Clinic and that helps. His Occupational Therapist also knows about feeding and gives me helpful tips. Sorry....I already worte a book here. I hope this helped and if you need anything else, please let me know. GOD BLESS and GOOD LUCK!
                              Gabriela (mother of Briar - 22 months, CP, CVI, Epilepsy, Scoliosis)
                              Nisa <nisa600@...> wrote:
                              Hi Gebriela,
                              My daughter has CVI and Cp with feeding problems.If you dont mind can I ask how is your son doing now.and dealing Cp with CVI. I can not find people with Cp And CVI.
                              My daughter's first yr was very difficult for me.She could not see any thing .Just was able to see from the right eye but very little and at just one angle.Her left eye was almost blind.I started vision therapies when she was 1 yr old.vision therapist is really very good.And now I can see lots of positive changes.She has color preferences red and yellow, her latency is 10 seconds with full good response which was more then 2 mins with minimal response.As vision is getting better she seems like active then before.
                              Nisa

                              Gabriela McCann <briarmc2004@...> wrote:
                              Hello Suzanne,

                              My name is Gabriela and I have a 22 month old son, Briar, with CP, Epilepsy, CVI, among other medical problems. I know you didn't ask me but I found hip helpers on the web. They aren't very fancy (at least the one's I ordered); as a matter of fact, they look very simple, something one can do at home. They are made of elastic/stretchy fabric and are sewn right in the middle which prevents the thighs from separating and keeps them close together. Hope this helps, but searh the web for more info. on this item. Also, we have been involved with Early Intervention since my son was 3 months old and the therapy he has been provided with thru EI has been a tremendous help. We recently ordered a stander for him thru his Physical Therapist (she had a friend that worked at an Ortho company) and thankfully my insurance paid some of the cost, but EI picked up the remainder. I don't know if you're family is involved with EI, but maybe you can ask around your area for more info. Hope this
                              has helped at least a little......GOOD LUCK!


                              Suzanne Esterline <suzanneesterline@...> wrote: Hi Nisa. My daughter is almost 20 months old now. But I was wondering how you went about getting the trunk vest and the hip helpers? That is something daisy could really use right now. Please let me know. That would be awesome. Thanks so much. Also, can I ask who paid for the stander? We were just denied from medicaid for it. Now we are going to try through first steps. But they take it back at 3.




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                            • Suzanne Esterline
                              Thanks Staci. We do have that. We have first steps, until she is 3 then she will go to school. staci woods wrote: I think you asked
                              Message 14 of 16 , Nov 19, 2005
                                Thanks Staci. We do have that. We have first steps, until she is 3 then she will go to school.

                                staci woods <flygirl_82us@...> wrote: I think you asked what EI is and I don't mean to butt in but...It is Early intervention service. It is from birth to 3 years after that the school systems take over. They provide services that will help your babies development. And depending on income it can be a free service.
                                Staci Mother of Hunter 2 CP and Zoe

                                cheerygirl05 <cheerygirl05@...> wrote:
                                I was trying to find someone who could tell me what to expect in the
                                first few years of her life? I am new to all of this and it would be
                                much appreciated if someone could give me a few pointers on what i
                                can do to help her learn...





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                              • Suzanne Esterline
                                Thank you Nisa. We have first steps. Daisy recieves PT, OT, Speech, and a nutrionist. All are a very good team. We also do water therapy and just began
                                Message 15 of 16 , Nov 19, 2005
                                  Thank you Nisa. We have first steps. Daisy recieves PT, OT, Speech, and a nutrionist. All are a very good team. We also do water therapy and just began massaging. We have therapy every day some days 2. Thanks again. Suzanne

                                  Nisa <nisa600@...> wrote: In some states It is called EI early intervention and in some states it is called ECI.Early childhood Intervention.They provide services like physical therapist,occupational therapist,Speech therapist,Developmental therapist,and vision therapist ,nurse and nutritionist.All those therapist come to your home to help you and your child.Good thing about ECI or EI is it is almost free.But it depends on your income .They charge you very minimal fees monthly based on your income.But it very very cheaper then what you pay to your therapist through insurance.and good thing about ECI is they come to your home.All therapist will come to your home weekly.you do not have to go any where.Even they provide equipment too.Talk to your Dr and ask about ECI.I live in Tx.I do not pay any thing to ECI.and I am taking all the services I mentioned above.earlier I was in Chicago and i was paying minimal payment for O.T and P.T.ECI provides services from birth till 3 yr of
                                  age.and after that School
                                  systems takes their place.
                                  If you have any question feel free to ask.
                                  Nisa


                                  Suzanne Esterline <suzanneesterline@...> wrote:
                                  Hello Gabriela,

                                  It was very helpful. Thank you. I have never heard of EI. What is it?

                                  Gabriela McCann <briarmc2004@...> wrote:
                                  Hello Suzanne,

                                  My name is Gabriela and I have a 22 month old son, Briar, with CP, Epilepsy, CVI, among other medical problems. I know you didn't ask me but I found hip helpers on the web. They aren't very fancy (at least the one's I ordered); as a matter of fact, they look very simple, something one can do at home. They are made of elastic/stretchy fabric and are sewn right in the middle which prevents the thighs from separating and keeps them close together. Hope this helps, but searh the web for more info. on this item. Also, we have been involved with Early Intervention since my son was 3 months old and the therapy he has been provided with thru EI has been a tremendous help. We recently ordered a stander for him thru his Physical Therapist (she had a friend that worked at an Ortho company) and thankfully my insurance paid some of the cost, but EI picked up the remainder. I don't know if you're family is involved with EI, but maybe you can ask around your area for more info. Hope this
                                  has helped at least a little......GOOD LUCK!


                                  Suzanne Esterline <suzanneesterline@...> wrote: Hi Nisa. My daughter is almost 20 months old now. But I was wondering how you went about getting the trunk vest and the hip helpers? That is something daisy could really use right now. Please let me know. That would be awesome. Thanks so much. Also, can I ask who paid for the stander? We were just denied from medicaid for it. Now we are going to try through first steps. But they take it back at 3.




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                                • Nisa
                                  Hi Gabriela, Glad to read that your son is making progress.And you are definitely wonderful mom working hard with him.Specially feeding.I think the most
                                  Message 16 of 16 , Nov 20, 2005
                                    Hi Gabriela,
                                    Glad to read that your son is making progress.And you are definitely wonderful mom working hard with him.Specially feeding.I think the most difficult part in our life is feeding our kids.My daughter has also aspiration problem and acid reflux problem.But she is doing better.Not fully resolves but better.My therapist has decided V-Stim therapy for her aspiration.Lets see what she will do know.She has hypotonia low muscle tone.She was in the beginning very stiff.But aqua therapy helped her in loosing that stiffness.Actually instead of taking her to the aqua therapy We filled our bath tub with warm water and let her play in it.She started playing in warm water and started kicking and moving arms.So it helped her in loosing up her arms and legs which were so stiff.
                                    Now we r working on sitting and standing.
                                    Thanks for the reply & Good luck
                                    Nisa
                                    Gabriela McCann <briarmc2004@...> wrote:
                                    Hi Nisa,
                                    My son is near sighted and has an astigmatizm in one eye. He also has a lazy eye (left one) and used to always move his head to the right (I guess he could see better with that one.) In May of this year, I patched his better eye (right eye) to make his left eye stronger, as per his Pediatric Opthomologist. This was done for about 3 weeks. I believe it helped, but now he tends to look to the left more. It's hard to make him look straight ahead. He receives Vision Therapy twice a week and it has helped. His favorite color is red and he likes pom poms and loves his mobile. He's already in a toddler bed (twin) and somehow I managed to put it up for him because he loves it. He can see better when he's laying down on his back, lookin up. We're trying to make him sit or stand and look up, down and straight ahead but it's been difficult. He can't move his arms or hands (he's so stiff) due to his high muscle tone so it's hard for him to actually look at something and not be able
                                    to reach, touch or grab. We work with him a lot. I put toys, books, fabrics, stuffed animals (different textures) in front of him (at his reach) and talk to him, encourage him to touch and look.

                                    I believe he's done great progress, but with his seizure medication, it's difficult for him to be very active and aware. He gets tired fast and becomes lethargic. We've tried so many seizure medications and none have been able to completely control his seizures, but I can sincerely say that lately I've seen a wonderful change in him. I think we're getting closer to reaching a good dosage on his meds (he takes Keppra, Phenobarbital & Topamax for seizures; Prevacid for Acid Reflux and Macrodantin to prevent Kindney Reflux.) So as you can see, it's a tough road for my son but he's doing everything he can. He's a fighter and I can't believe how strong he is. He gives me strength and energy. I look at him and see how much he wants to do things, to move, to touch, etc. He gets so excited. He's just so wonderful. It takes a lot of time and patience and believe me, before my son I thought I had none! As far as feeding goes, he does have acid reflux, but the prevacid has helped
                                    tremendously. He is now eating stage 3 strained foods and sometimes I crush a cracker in his food (if it's too watery) to make it thicker. I move his jaw and help him chew. He's doing a pretty good job himself. I go slow and talk to him a lot. I say things like, "ok Bri, it's time to eat, here comes the spoon....hhhmmmmm it's yummy." I touch his lips softly with the spoon because he'll startle if I don't. He still startles a little, but he's okay. He starts moving his lips and mouth and realizes there's food there and then it's easy. Briar also receives Speech Therapy and goes to the Feeding Clinic and that helps. His Occupational Therapist also knows about feeding and gives me helpful tips. Sorry....I already worte a book here. I hope this helped and if you need anything else, please let me know. GOD BLESS and GOOD LUCK!
                                    Gabriela (mother of Briar - 22 months, CP, CVI, Epilepsy, Scoliosis)
                                    Nisa <nisa600@...> wrote:
                                    Hi Gebriela,
                                    My daughter has CVI and Cp with feeding problems.If you dont mind can I ask how is your son doing now.and dealing Cp with CVI. I can not find people with Cp And CVI.
                                    My daughter's first yr was very difficult for me.She could not see any thing .Just was able to see from the right eye but very little and at just one angle.Her left eye was almost blind.I started vision therapies when she was 1 yr old.vision therapist is really very good.And now I can see lots of positive changes.She has color preferences red and yellow, her latency is 10 seconds with full good response which was more then 2 mins with minimal response.As vision is getting better she seems like active then before.
                                    Nisa

                                    Gabriela McCann <briarmc2004@...> wrote:
                                    Hello Suzanne,

                                    My name is Gabriela and I have a 22 month old son, Briar, with CP, Epilepsy, CVI, among other medical problems. I know you didn't ask me but I found hip helpers on the web. They aren't very fancy (at least the one's I ordered); as a matter of fact, they look very simple, something one can do at home. They are made of elastic/stretchy fabric and are sewn right in the middle which prevents the thighs from separating and keeps them close together. Hope this helps, but searh the web for more info. on this item. Also, we have been involved with Early Intervention since my son was 3 months old and the therapy he has been provided with thru EI has been a tremendous help. We recently ordered a stander for him thru his Physical Therapist (she had a friend that worked at an Ortho company) and thankfully my insurance paid some of the cost, but EI picked up the remainder. I don't know if you're family is involved with EI, but maybe you can ask around your area for more info. Hope this
                                    has helped at least a little......GOOD LUCK!


                                    Suzanne Esterline <suzanneesterline@...> wrote: Hi Nisa. My daughter is almost 20 months old now. But I was wondering how you went about getting the trunk vest and the hip helpers? That is something daisy could really use right now. Please let me know. That would be awesome. Thanks so much. Also, can I ask who paid for the stander? We were just denied from medicaid for it. Now we are going to try through first steps. But they take it back at 3.




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