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Re: [CEREBRAL PALSY CLUB] A good day

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  • Julie and Joey
    ... Hi Christine, I m Julie. I m new to the group. I have a 20-month-old boy, who was diagnosed with PVL at 3-1/2 months and then CP at 9 months. How old is
    Message 1 of 23 , Nov 18, 2002
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      --- Christine wrote:
      > So, my questions to you experts are these: Back
      > arching--how much of a concern should it be and is
      > there anything I can do to help with that? I would
      > love any info on brushing or infant massage and
      > stories about how it helped or didn't help.

      Hi Christine, I'm Julie. I'm new to the group. I
      have a 20-month-old boy, who was diagnosed with PVL at
      3-1/2 months and then CP at 9 months. How old is
      Kyleigh? One thing I've done to discourage arching is
      to put him on his back in a Boppy pillow, with his
      head on the curve and the "arms" at his sides. That
      helps for playing. (he doesn't sleep that way, he
      sleeps on his tummy) I've also tried massage. It's
      helped a lot with digestion (he used to have a stool
      maybe once a week and now it's every day). The book
      our OT suggested is "Infant Massage" by Vimala
      Schneidre McClure. It's very easy to follow and has
      nice pictures. She suggested using grape seed oil (or
      other food oil) instead of baby oil because baby oil
      is dangerous, if swallowed. I'm not familiar with any
      brushing techniques. Is that for tactile stimulation?
      My son hasn't really had much of a problem with
      textures on his hands or face. He did gag some when
      starting solids, but does really well now. I hope
      that helps.

      =====
      Julie
      Mom to Joey 26-weeker, born January 12 '01. ~~~ 1 pound 6 ounces ~~~ http://community.webtv.net/Solace_2/FrancisJosephDavid ***"Look at the stars. Look how they shine for you and all the things you do"***

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    • bettieblue2001
      ouch christine!! i always thought housework was a dangerous thing! lol hope ur leg gets better soon! im so glad the early intervention thing went well! i
      Message 2 of 23 , Nov 19, 2002
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        ouch christine!! i always thought housework was a dangerous thing!
        lol hope ur leg gets better soon!
        im so glad the early intervention thing went well! i love the
        therapists lisa has - they r amazing, would be lost without them
        thats for sure!
        i havent heard of the brushing thing? any info anyone could give
        would be appreciated by me as well. we r very into massage tho - ive
        found it helped so much, especially when she was younger and a bit
        more sensitive to touch. and we have just started a point percussion
        therapy, which is based on accupressure, that i have also found to be
        good. havent seen any great improvements yet, but she loves it! the
        head of the eip physio dept is from hong kong, and practised
        traditional chinese medicine before coming to australia and studying
        physio, so he knows it all. i think u have to be careful tho with
        accupressure that the therapists is fully trained - but i think worth
        a look.
        glad to hear it was such a good day!
        tania
      • Christine & Aaron Kramlich
        Yes, Julie, all that you said is very helpful. Let me make just a few comments. Hi Christine, I m Julie. I m new to the group. I have a 20-month-old boy,
        Message 3 of 23 , Nov 19, 2002
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          Yes, Julie, all that you said is very helpful. Let me make just a few comments.
          Hi Christine, I'm Julie. I'm new to the group. I
          have a 20-month-old boy, who was diagnosed with PVL at
          3-1/2 months and then CP at 9 months.

          >>What is PVL?

          How old is
          Kyleigh?

          >>Kyleigh is only 5 months old.

          One thing I've done to discourage arching is
          to put him on his back in a Boppy pillow, with his
          head on the curve and the "arms" at his sides. That
          helps for playing. (he doesn't sleep that way, he
          sleeps on his tummy)

          >>Kyleigh won't sleep on her back either. She won't even tolerate laying on her back for longer than about 10 minutes.

          I've also tried massage. It's
          helped a lot with digestion (he used to have a stool
          maybe once a week and now it's every day). The book
          our OT suggested is "Infant Massage" by Vimala
          Schneidre McClure. It's very easy to follow and has
          nice pictures. She suggested using grape seed oil (or
          other food oil) instead of baby oil because baby oil
          is dangerous, if swallowed.

          >>Thank you so much for the suggestion on the book. I'm going to the book store today so I'll look for it then.

          I'm not familiar with any
          brushing techniques. Is that for tactile stimulation?
          >>It's actually for kids with sensory integration issues which Kyleigh definitely has.

          My son hasn't really had much of a problem with
          textures on his hands or face. He did gag some when
          starting solids, but does really well now. I hope
          that helps.

          >>I'm dreading starting Kyleigh on 'real' food. I didn't even start my first child on 'real' food until 7 months and she was a big girl so I guess there's no rush, eh?
          Christine K.



          [Non-text portions of this message have been removed]
        • Julie and Joey
          ... PVL is perivetricular leukomalacia...it s a brain injury that doesn t bleed, but causes damage to the white matter of the brain. Because of this, I
          Message 4 of 23 , Nov 19, 2002
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            --- Christine wrote:
            > >>What is PVL?

            PVL is perivetricular leukomalacia...it's a brain
            injury that doesn't bleed, but causes damage to the
            white matter of the brain. Because of this, I
            actually pushed for a diagnosis of CP. It was
            *totally* obvious that he has it and the diagnosis
            helps a lot with getting the treatment he needs. The
            earlier the better, in my opinion. 5 months is pretty
            young for a diagnosis yet, but, if you really feel it
            in your gut, don't be afraid to push for a diagnosis
            by 1 year. The doc can always take back the diagnosis
            and extra therapy can only help.

            > >>Kyleigh is only 5 months old.

            Was she a preemie? If so, is that actual or corrected
            age? And how big is she? You could probably use a
            Boppy pillow at this age, if you put a quilt over it,
            so she doesn't sink into it too much. Laying on her
            back, with her head up a little, (so the back of her
            neck is elongated) will help a lot with the arching.
            My son would tolerate this even when he hated to be on
            his back because the sides of the Boppy cradled him
            and made him feel secure. You can also do this when
            she's in your arms, but I found that when he could see
            my face directly, he didn't arch as much as when I
            held him in my arms. It's also great for cognitive
            development to see mommy's whole face. :-)

            > >>Kyleigh won't sleep on her back either. She
            > won't even tolerate laying on her back for longer
            > than about 10 minutes.

            Joey used to panic when he was on his back. He'd move
            his arms and legs like he was trying to grab onto
            something. Now, he does much better. I don't know if
            it came with maturity or changing his reflux meds.
            Either way, he loves to wiggle on his back now. :-)
            How does she do with side-lying? Does she try to
            roll? Joey doesn't roll at all yet, but he pushes
            with his legs a little bit.

            > >>Thank you so much for the suggestion on the
            > book. I'm going to the book store today so I'll
            > look for it then.

            You're welcome. :-) Did you find it?

            > I'm not familiar with any
            > brushing techniques. Is that for tactile
            > stimulation?
            > >>It's actually for kids with sensory integration
            > issues which Kyleigh definitely has.

            Okay, I've heard good things about brushing techniques
            (just not how they work). :-)

            > >>I'm dreading starting Kyleigh on 'real' food. I
            > didn't even start my first child on 'real' food
            > until 7 months and she was a big girl so I guess
            > there's no rush, eh?

            No rush at all. I didn't start my son on solids until
            9 months. He had a *lot* of trouble with cereal (no
            matter how thin I made it), so we moved on to fruit
            pretty quickly and he did better with that. He's got
            quite a sweet tooth though. *Loves* fruit! And the
            only vegetable he really likes is sweet potato. :-)

            =====
            Julie
            Mom to Joey 26-weeker, born January 12 '01. ~~~ 1 pound 6 ounces ~~~ http://community.webtv.net/Solace_2/FrancisJosephDavid ***"Look at the stars. Look how they shine for you and all the things you do"***

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          • Christine & Aaron Kramlich
            don t be afraid to push for a diagnosis by 1 year. The doc can always take back the diagnosis and extra therapy can only help. ... Was she a preemie? If so,
            Message 5 of 23 , Nov 20, 2002
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              don't be afraid to push for a diagnosis
              by 1 year. The doc can always take back the diagnosis
              and extra therapy can only help.

              >>I've seen enough CP to be fairly sure she has it. The only reason I haven't pushed for a diagnosis is because I am not sure what is the down side of having a diagnosis (i.e. is insurance going to now tell me she has a pre-existing condition that they won't cover?).


              > >>Kyleigh is only 5 months old.

              Was she a preemie? If so, is that actual or corrected
              age? And how big is she?

              No, she was born at term, but my uterus ruptured which is how she lost oxygen. She is slight and small, especially when I think about my 3 year old who was already 20 pounds at 3 months. Kyleigh is about 24 inches long and 12 pounds according to the nuerologist yesterday.

              You could probably use a
              Boppy pillow at this age, if you put a quilt over it,
              so she doesn't sink into it too much. Laying on her
              back, with her head up a little, (so the back of her
              neck is elongated) will help a lot with the arching.

              >>Oooh, excellent idea. I've been putting her on it with her arms over the top on her belly so that she could push up better, but I never thought about using it for her to lay on her back.

              Does she try to
              roll? Joey doesn't roll at all yet, but he pushes
              with his legs a little bit.

              >>She can roll from tummy to back but not from back to tummy. Mostly, she can do that because her arms are so tight...I'm positive it's not purposeful movement, however, last night at dinner she shocked me because I was holding her, with her right side facing the table (her right arm is her stronger one) and she grabbed the plate repeatedly. I kept thinking it was by accident, but I watched her and eventually I figured out it was purposeful so I gave her a piece of rice off my plate after I squashed it up real good (:

              > >>Thank you so much for the suggestion on the
              > book. I'm going to the book store today so I'll
              > look for it then.

              You're welcome. :-) Did you find it?

              >>Nope, didn't make it to the book store, but I will today. Yesterday was DH's birthday so I didn't get much done.

              Thank you so very much for sharing with me your experiences. In my class at school I have a micro preemie who is doing beautifully. She's 7 years old and you'd never know she was on oxygen for 45 days except that she doesn't see well due to ROP. It's amazing how well children can rebound from the most traumatic of circumstances.
              Christine K.


              [Non-text portions of this message have been removed]
            • Julie and Joey
              ... Hmmm...I don t think they can do that. I hope not anyway. I think there are certain things like CP, MD, MS, diabetes, stuff like that, that would not be
              Message 6 of 23 , Nov 20, 2002
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                --- Christine wrote:
                > >>I've seen enough CP to be fairly sure she has it.
                > The only reason I haven't pushed for a diagnosis is
                > because I am not sure what is the down side of
                > having a diagnosis (i.e. is insurance going to now
                > tell me she has a pre-existing condition that they
                > won't cover?).

                Hmmm...I don't think they can do that. I hope not
                anyway. I think there are certain things like CP, MD,
                MS, diabetes, stuff like that, that would not be
                considered pre-existing because they're life-long
                disabilities. Did you change insurance since she was
                born?

                > No, she was born at term, but my uterus ruptured
                > which is how she lost oxygen. She is slight and
                > small, especially when I think about my 3 year old
                > who was already 20 pounds at 3 months. Kyleigh is
                > about 24 inches long and 12 pounds according to the
                > nuerologist yesterday.

                I see. I had pre-eclampsia. Joey is almost
                2-years-old and weighs 17 pounds. :-)

                > >>Oooh, excellent idea. I've been putting her on it
                > with her arms over the top on her belly so that she
                > could push up better, but I never thought about
                > using it for her to lay on her back.

                I'm not sure if your situation is the same as ours (it
                sounds similar...Joey has tightness in his arms, but
                not so much in his legs, plus arching), but Joey's OT
                recommended limiting tummy-time because it sort of
                encourages arching (it strengthens the back of the
                neck, when you want to strengthen the front and the
                tummy) How is Kyleigh's head control? Joey's is
                great when leaning forward, but weak when leaning
                back.

                > >>She can roll from tummy to back but not from back
                > to tummy. Mostly, she can do that because her arms
                > are so tight...I'm positive it's not purposeful
                > movement, however, last night at dinner she shocked
                > me because I was holding her, with her right side
                > facing the table (her right arm is her stronger one)
                > and she grabbed the plate repeatedly. I kept
                > thinking it was by accident, but I watched her and
                > eventually I figured out it was purposeful so I gave
                > her a piece of rice off my plate after I squashed it
                > up real good (:

                I think she knows what she wants! :-) Sounds like a
                determined girl! That's great!

                > Thank you so very much for sharing with me your
                > experiences.

                You're welcome. :-)

                > In my class at school I have a micro
                > preemie who is doing beautifully. She's 7 years old
                > and you'd never know she was on oxygen for 45 days
                > except that she doesn't see well due to ROP. It's
                > amazing how well children can rebound from the most
                > traumatic of circumstances.

                Isn't it? Joey has strabismus, but luckily not ROP
                (his vision is great!) He had early stages of it, but
                it self-corrected. (and he was on oxygen for 108
                days! We thought he'd come home on oxygen, but he
                fooled us and weaned himself 1 week before coming
                home). :-)

                =====
                Julie
                Mom to Joey 26-weeker, born January 12 '01. ~~~ 1 pound 6 ounces ~~~ http://community.webtv.net/Solace_2/FrancisJosephDavid ***"Look at the stars. Look how they shine for you and all the things you do"***

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              • Christine & Aaron Kramlich
                Hmmm...I don t think they can do that. I hope not anyway. I think there are certain things like CP, MD, MS, diabetes, stuff like that, that would not be
                Message 7 of 23 , Nov 20, 2002
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                  Hmmm...I don't think they can do that. I hope not
                  anyway. I think there are certain things like CP, MD,
                  MS, diabetes, stuff like that, that would not be
                  considered pre-existing because they're life-long
                  disabilities. Did you change insurance since she was
                  born?

                  >>No, I haven't changed insurance, but I know they wouldn't grant us life insurance on her because she's considered to have a pre-existing condition. I am just worried that might come up again.


                  I see. I had pre-eclampsia. Joey is almost
                  2-years-old and weighs 17 pounds. :-)

                  >>Oh, that makes me feel much better! (: I keep hearing that CP babies just tend to be smaller, but that's a tough one for me to swallow.

                  I'm not sure if your situation is the same as ours (it
                  sounds similar...Joey has tightness in his arms, but
                  not so much in his legs, plus arching), but Joey's OT
                  recommended limiting tummy-time because it sort of
                  encourages arching (it strengthens the back of the
                  neck, when you want to strengthen the front and the
                  tummy)

                  >>Good point. I can see how that would work against you. Kyleigh is still working on head control. It's not terrible, but it's not where it should be either. She still wobbles some.

                  I think she knows what she wants! :-) Sounds like a
                  determined girl! That's great!

                  >>My three year old is firey too...and Kyleigh has red hair so I'm hoping she gets a personality to match. I know she'll need it.

                  Isn't it? Joey has strabismus, but luckily not ROP
                  (his vision is great!) He had early stages of it, but
                  it self-corrected. (and he was on oxygen for 108
                  days! We thought he'd come home on oxygen, but he
                  fooled us and weaned himself 1 week before coming
                  home). :-)

                  >>Wow, that's just plain amazing. I'm glad to hear his vision is good. That's a wonderful advantage. Did you know that 90% of what we learn is through our vision?
                  Christine K.



                  [Non-text portions of this message have been removed]
                • Julie and Joey
                  ... I see. I suppose life insurance is different than health insurance. I get applications for Gerber Life Insurance in the mail all the time that say
                  Message 8 of 23 , Nov 20, 2002
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                    --- Christine wrote:
                    > >>No, I haven't changed insurance, but I know they
                    > wouldn't grant us life insurance on her because
                    > she's considered to have a pre-existing condition.
                    > I am just worried that might come up again.

                    I see. I suppose life insurance is different than
                    health insurance. I get applications for Gerber Life
                    Insurance in the mail all the time that say
                    "guaranteed acceptance". Maybe you could get that?
                    Have you had trouble with health insurance? We've got
                    Medical Assistance and they cover everything...plus
                    the school system covers therapy (regardless of
                    income).

                    > >>Oh, that makes me feel much better! (: I keep
                    > hearing that CP babies just tend to be smaller, but
                    > that's a tough one for me to swallow.

                    Yeah, I've heard that too. I've heard that their
                    bodies "know" to stay small because it's easier to
                    move a smaller body than a big one. I've heard the
                    opposite too...that more weight creates better muscle
                    tone (but most of the bigger kids with CP have usually
                    had feeding tubes, so they don't often come by it
                    naturally). Joey isn't even in the 5% range on the
                    preemie growth chart, but we finally found a formula
                    that is high calorie, doesn't fill him up too fast and
                    stays down. He's started gaining much better now.
                    Last winter, he gained a total of 3 ounces in 3
                    months. They were talking about tubes and everything
                    (which I don't like). That's when I got radical and
                    looked into massage and other holistic therapies. I'm
                    not really comfortable with surgery, so I look at
                    *all* the alternatives and try to do things as
                    naturally as possible. If it becomes obvious that he
                    really needs surgery at some point, I'll consent, but
                    not without exhausting every option.

                    > >>My three year old is firey too...and Kyleigh has
                    > red hair so I'm hoping she gets a personality to
                    > match. I know she'll need it.

                    I'm a red-head too...can you tell? :-) I'm pretty
                    stubborn and outspoken sometimes, especially when it
                    comes to my child. We are our child(ren)'s best
                    advocate and our best weapon in fighting for their
                    rights is knowledge. :-)

                    =====
                    Julie
                    Mom to Joey 26-weeker, born January 12 '01. ~~~ 1 pound 6 ounces ~~~ http://community.webtv.net/Solace_2/FrancisJosephDavid ***"Look at the stars. Look how they shine for you and all the things you do"***

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                  • Christine & Aaron Kramlich
                    Hehe, Gerber Life..that s the one we tried to get that turned us down. LOL...I mean, the only reason we even have life insurance on our other daughter is in
                    Message 9 of 23 , Nov 21, 2002
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                      Hehe, Gerber Life..that's the one we tried to get that turned us down.
                      LOL...I mean, the only reason we even have life insurance on our other
                      daughter is in case of accidental death to cover the funeral costs and
                      arrangements. I know if something tragic happened, we wouldn't want to have
                      to be worrying about money too.

                      > Have you had trouble with health insurance? We've got
                      > Medical Assistance and they cover everything...plus
                      > the school system covers therapy (regardless of
                      > income).

                      Yes, we've had awful trouble with insurance. Even from day one, they don't
                      want to cover things. There excuse for not covering bills on the day she
                      was born was that we're not allowed to see multiple doctors in one day...so
                      since Kyleigh had to see a respiratory therapist to help her breath, a
                      neonatologist to recessitate her, etc...they only want to cover one doctor.
                      They also do not cover OT or speech, but they cover PT...usually only in the
                      case of surgery recovery though. We're working on getting TEFRA but we're
                      still short on some paperwork. That should help pick up the windfall. We
                      also recently got hooked in with Baby Net which does cover all services she
                      needs such as OT, PT, and speech if insurance does not so that's good..and
                      our school system covers them when she turns three.

                      Joey isn't even in the 5% range on the
                      > preemie growth chart, but we finally found a formula
                      > that is high calorie, doesn't fill him up too fast and
                      > stays down. He's started gaining much better now.

                      That's one reason I haven't taken Kyleigh to see our family doctor since she
                      was two weeks old. I'm afraid he'd said she's not gaining enough weight
                      according to his charts. She's nursing exclusively and she hasn't been sick
                      with any illness yet so as long as that continues, I'm going to keep nursing
                      her as much as possible.

                      If it becomes obvious that he
                      > really needs surgery at some point, I'll consent, but
                      > not without exhausting every option.

                      That's how I feel as well, which reminds me...my OT said that if she doesn't
                      see results in 3 months of therapy, she's going to send Kyleigh to an
                      orthopedic specialist...does that mean surgery??

                      > I'm a red-head too...can you tell? :-) I'm pretty
                      > stubborn and outspoken sometimes, especially when it
                      > comes to my child. We are our child(ren)'s best
                      > advocate and our best weapon in fighting for their
                      > rights is knowledge. :-)

                      I'm not a red head, but lucky for me I have the personality of one. I've
                      always been a fighter (I even led a sit in my junior year of high
                      school...and I wasn't even born in the 60s!). It's serving me well now.
                      Christine K.
                    • Julie and Joey
                      ... Hmmmm... :-{ ... Excuse my language, but your insurance company is trying to screw you. Have you been to http://www.formychild.com ? You can get legal
                      Message 10 of 23 , Nov 21, 2002
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                        --- Christine wrote:
                        > Hehe, Gerber Life..that's the one we tried to get
                        > that turned us down.

                        Hmmmm... >:-{

                        > Yes, we've had awful trouble with insurance. Even
                        > from day one, they don't
                        > want to cover things. There excuse for not covering
                        > bills on the day she
                        > was born was that we're not allowed to see multiple
                        > doctors in one day...

                        Excuse my language, but your insurance company is
                        trying to screw you. Have you been to
                        http://www.formychild.com ? You can get legal
                        information on that site and they may be able to help
                        you squeeze the insurance company to get what you're
                        paying for. That's just absolutely insane! The site
                        also has the names of insurance companies that *are*
                        good (if that's an option for you).

                        > That's one reason I haven't taken Kyleigh to see our
                        > family doctor since she
                        > was two weeks old. I'm afraid he'd said she's not
                        > gaining enough weight
                        > according to his charts. She's nursing exclusively
                        > and she hasn't been sick
                        > with any illness yet so as long as that continues,
                        > I'm going to keep nursing
                        > her as much as possible.

                        Well, if you go to a doctor who tells you to stop
                        nursing, go to another doctor. Joey didn't stop
                        nursing to switch to formula, he stopped because *he*
                        wanted to. I tried for over 4 months to get him to
                        continue, but he decided at 11 months that he was done
                        (and that's when his weight gain really slowed). I
                        think follow-up care from a *good* pediatrician is
                        important.

                        > If it becomes obvious that he
                        > > really needs surgery at some point, I'll consent,
                        > but
                        > > not without exhausting every option.
                        >
                        > That's how I feel as well, which reminds me...my OT
                        > said that if she doesn't
                        > see results in 3 months of therapy, she's going to
                        > send Kyleigh to an
                        > orthopedic specialist...does that mean surgery??

                        Not necessarily. Joey sees a physiatrist and an
                        orthotist and they've never mentioned surgery. His
                        physiatrist mentioned botox injections (another thing
                        I'll avoid, if possible) for his arms, but that's it.
                        If you do range-of-motion exercises with her arms, you
                        may be able to avoid botox too. Ask your OT to teach
                        them to you, if you don't know how (or I could tell
                        you, if she doesn't...sometimes that's a PT thing).
                        Keeping those arms as loose as you can is best. Do
                        you know about not pulling her hands to straighten her
                        arms? That can actually encourage tightness. To
                        straighten her arms, it's best to push from behind her
                        elbow and gently shake her arm. (Sorry, if you
                        already know this).

                        > I'm not a red head, but lucky for me I have the
                        > personality of one.

                        LOL! Good. :-)

                        > I've
                        > always been a fighter (I even led a sit in my junior
                        > year of high
                        > school...and I wasn't even born in the 60s!). It's
                        > serving me well now.

                        Sounds a lot like me. I was heavily into "women's
                        lib" in second grade. :-) I was born in 1966, so I
                        got the tail-end of all that stuff. Now I'm a
                        stay-at-home mom and wouldn't have it any other way!
                        Go figure. :-D


                        =====
                        Julie
                        Mom to Joey 26-weeker, born January 12 '01. ~~~ 1 pound 6 ounces ~~~ http://community.webtv.net/Solace_2/FrancisJosephDavid ***"Look at the stars. Look how they shine for you and all the things you do"***

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                      • bettieblue2001
                        ... she doesn t ... an ... not necessasilily - lisa sees an orthopedic surgeon to check on her hips and to make sure the muscels r growing - so that if a
                        Message 11 of 23 , Nov 21, 2002
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                          > That's how I feel as well, which reminds me...my OT said that if
                          she doesn't
                          > see results in 3 months of therapy, she's going to send Kyleigh to
                          an
                          > orthopedic specialist...does that mean surgery??
                          >
                          not necessasilily - lisa sees an orthopedic surgeon to check on her
                          hips and to make sure the muscels r growing - so that if a problem is
                          developing with possible hip dislocation, they can get to it before
                          it becomes a problem, and treat it with botox first.
                          tania
                        • Christine & Aaron Kramlich
                          ... I am appealing the decision by the insurance company not to cover some of our medical bills. I, quite frankly, think it is simply ludicrous. Have you been
                          Message 12 of 23 , Nov 21, 2002
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                            >
                            > Excuse my language, but your insurance company is
                            > trying to screw you.

                            I am appealing the decision by the insurance company not to cover some of
                            our medical bills. I, quite frankly, think it is simply ludicrous.

                            Have you been to
                            > http://www.formychild.com ?

                            I hadn't before...I have now. Thank you for the information.

                            > Well, if you go to a doctor who tells you to stop
                            > nursing, go to another doctor.

                            We already decided not to take Kyleigh to the local pediatrician because
                            they wanted to push vaccines and I'm not comfortable with that.

                            Joey didn't stop
                            > nursing to switch to formula, he stopped because *he*
                            > wanted to. I tried for over 4 months to get him to
                            > continue, but he decided at 11 months that he was done
                            > (and that's when his weight gain really slowed). I
                            > think follow-up care from a *good* pediatrician is
                            > important.

                            I agree...I just wish we had a good one locally.


                            Do
                            > you know about not pulling her hands to straighten her
                            > arms? That can actually encourage tightness. To
                            > straighten her arms, it's best to push from behind her
                            > elbow and gently shake her arm. (Sorry, if you
                            > already know this).

                            I figured that one out on my own but not without a good deal of practicing
                            the wrong one. I finally figured out that the joints were the key and she
                            just pulls in more if I tug on her hands. It works the same way for her
                            legs.

                            Thank you again for all your wonderful advice. It's so good to talk to
                            someone else who has walked this road.
                            Christine K.
                          • Julie and Joey
                            ... I agree. :-) ... I understand. Do you practice AP or CC? You can always say you don t want vaccines for religious reasons. :-) ... Do you only have
                            Message 13 of 23 , Nov 23, 2002
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                              --- Christine wrote:
                              > I am appealing the decision by the insurance company
                              > not to cover some of
                              > our medical bills. I, quite frankly, think it is
                              > simply ludicrous.

                              I agree. :-)

                              > We already decided not to take Kyleigh to the local
                              > pediatrician because
                              > they wanted to push vaccines and I'm not comfortable
                              > with that.

                              I understand. Do you practice AP or CC? You can
                              always say you don't want vaccines for "religious"
                              reasons. :-)

                              > I
                              > > think follow-up care from a *good* pediatrician is
                              > > important.
                              >
                              > I agree...I just wish we had a good one locally.

                              Do you only have one that you can go to, with your
                              insurance plan? I'm sure a lot of peds are required
                              to "recommend" vaccines, but you don't have to accept
                              their advice. Our ped suggested surgery for Joey's
                              strabismus and undecended testicle and I just said
                              "no" and he hasn't mentioned it since. If they push
                              you, just push back. :-)

                              > Thank you again for all your wonderful advice. It's
                              > so good to talk to
                              > someone else who has walked this road.

                              Glad I could help. :-)

                              =====
                              Julie
                              Mom to Joey 26-weeker, born January 12 '01. ~~~ 1 pound 6 ounces ~~~ http://community.webtv.net/Solace_2/FrancisJosephDavid ***"Look at the stars. Look how they shine for you and all the things you do"***

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                            • Christine & Aaron Kramlich
                              ... We have said that we don t want vaccines for religious reasons. Yes, I would say we practice AP...what s CC? The pediatrician we took Kyleigh too made
                              Message 14 of 23 , Nov 23, 2002
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                                > > We already decided not to take Kyleigh to the local
                                > > pediatrician because
                                > > they wanted to push vaccines and I'm not comfortable
                                > > with that.
                                >
                                > I understand. Do you practice AP or CC? You can
                                > always say you don't want vaccines for "religious"
                                > reasons. :-)

                                We have said that we don't want vaccines for religious reasons. Yes, I
                                would say we practice AP...what's CC? The pediatrician we took Kyleigh too
                                made you sign something that said you would vaccinate your child. If not,
                                they will refuse to see your child so we're just going to a family dr. right
                                now. Kyleigh hasn't been there since 2 weeks old though.
                                Christine K.
                              • Julie and Joey
                                ... CC is Continuum Concept...similar to AP, but a little more radical . I m an AP person myself. ... That s crazy! What state do you live in? ... Well, I
                                Message 15 of 23 , Nov 23, 2002
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                                  --- Christine wrote:
                                  > We have said that we don't want vaccines for
                                  > religious reasons. Yes, I
                                  > would say we practice AP...what's CC?

                                  CC is Continuum Concept...similar to AP, but a little
                                  more "radical". I'm an AP person myself.

                                  > The
                                  > pediatrician we took Kyleigh too
                                  > made you sign something that said you would
                                  > vaccinate your child. If not,
                                  > they will refuse to see your child so we're just
                                  > going to a family dr. right
                                  > now.

                                  That's crazy! What state do you live in?

                                  > Kyleigh hasn't been there since 2 weeks old
                                  > though.

                                  Well, I hope you find a good ped. Ours has been such
                                  a good resource for specialty care, like the
                                  physiatrist and nutritionist, etc. Btw, have you ever
                                  tried nettle for "enriching" your breastmilk? It's
                                  supposed to somehow increase the calories or
                                  something. I'm not saying your breastmilk isn't good
                                  enough or anything, but if you're interested in
                                  "boosting" it a little to help her gain weight, it
                                  might be worth trying.

                                  Here's something I found on a website:
                                  Nettle
                                  Also known as stinging nettles, nettle is one of the
                                  most mineral rich plants on earth. Particularly high
                                  in calcium, iron, protein, chlorophyll and vitamin C,
                                  nettle is a delicious food as well as a medicine. It
                                  is an excellent nourishing herb for pregnancy, it can
                                  enrich the quality and increase the flow of breastmilk
                                  and restore a mother's energy after childbirth. Nettle
                                  can be powdered and added to smoothies or drunk
                                  regularly as a tea or infusion.

                                  =====
                                  Julie
                                  Mom to Joey 26-weeker, born January 12 '01. ~~~ 1 pound 6 ounces ~~~ http://community.webtv.net/Solace_2/FrancisJosephDavid ***"Look at the stars. Look how they shine for you and all the things you do"***

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                                • Christine & Aaron Kramlich
                                  ... Hehe...this should explain a lot. South Carolina...most possible the most backward state in the entire USA. We re looking into the possibility of moving.
                                  Message 16 of 23 , Nov 23, 2002
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                                    > > The
                                    > > pediatrician we took Kyleigh too
                                    > > made you sign something that said you would
                                    > > vaccinate your child. If not,
                                    > > they will refuse to see your child so we're just
                                    > > going to a family dr. right
                                    > > now.
                                    >
                                    > That's crazy! What state do you live in?

                                    Hehe...this should explain a lot. South Carolina...most possible the most
                                    backward state in the entire USA. We're looking into the possibility of
                                    moving. My Dh was from PA and me, I'm from FL, so we tried to meet
                                    someplace between when we got married.

                                    > Well, I hope you find a good ped. Ours has been such
                                    > a good resource for specialty care, like the
                                    > physiatrist and nutritionist, etc. Btw, have you ever
                                    > tried nettle for "enriching" your breastmilk?

                                    No, I'm kinda a naturalist. I don't like any kind of medication or
                                    enhancement unless it's absolutely necessary. If Kyleigh gets diagnosed
                                    failure to thrive or something, I might go that route, but otherwise, I'm
                                    just sticking with Mom's milk.

                                    It
                                    > is an excellent nourishing herb for pregnancy, it can
                                    > enrich the quality and increase the flow of breastmilk
                                    > and restore a mother's energy after childbirth. Nettle
                                    > can be powdered and added to smoothies or drunk
                                    > regularly as a tea or infusion.

                                    That's very interesting. I wish I had known about it right after Kyleigh
                                    was born. I lost a lot of blood and really needed a transfusion, but
                                    refused it. It probably would have helped me recover faster. I'm still not
                                    100%.
                                    Christine K.
                                  • Julie and Joey
                                    ... Ahh! :-) I m in Minnesota...very liberal. :-) I ll put up with cold, if it means being allowed to have my own opinions. ... Do you consider herbs to
                                    Message 17 of 23 , Nov 23, 2002
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                                      --- Christine wrote:
                                      > Hehe...this should explain a lot. South
                                      > Carolina...

                                      Ahh! :-) I'm in Minnesota...very liberal. :-) I'll
                                      put up with cold, if it means being "allowed" to have
                                      my own opinions.

                                      > > Btw, have you
                                      > ever
                                      > > tried nettle for "enriching" your breastmilk?
                                      >
                                      > No, I'm kinda a naturalist. I don't like any kind
                                      > of medication or
                                      > enhancement unless it's absolutely necessary. If
                                      > Kyleigh gets diagnosed
                                      > failure to thrive or something, I might go that
                                      > route, but otherwise, I'm
                                      > just sticking with Mom's milk.

                                      Do you consider herbs to be not natural? Nettle is an
                                      herb. It would be something *you* would take, not
                                      Kyleigh. I think "Mother's Milk" tea has nettle in it
                                      and other milk-boosting herbs.

                                      > It
                                      > > is an excellent nourishing herb for pregnancy, it
                                      > can
                                      > > enrich the quality and increase the flow of
                                      > breastmilk
                                      > > and restore a mother's energy after childbirth.
                                      > Nettle
                                      > > can be powdered and added to smoothies or drunk
                                      > > regularly as a tea or infusion.
                                      >
                                      > That's very interesting. I wish I had known about
                                      > it right after Kyleigh
                                      > was born. I lost a lot of blood and really needed a
                                      > transfusion, but
                                      > refused it. It probably would have helped me
                                      > recover faster. I'm still not
                                      > 100%.

                                      It could still help. :-)

                                      =====
                                      Julie
                                      Mom to Joey 26-weeker, born January 12 '01. ~~~ 1 pound 6 ounces ~~~ http://community.webtv.net/Solace_2/FrancisJosephDavid ***"Look at the stars. Look how they shine for you and all the things you do"***

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                                    • Christine & Aaron Kramlich
                                      ... From: Julie and Joey To: Sent: Saturday, November 23, 2002 4:34 PM Subject: Re: [CEREBRAL PALSY
                                      Message 18 of 23 , Nov 23, 2002
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                                        ----- Original Message -----
                                        From: "Julie and Joey" <solace_69@...>
                                        To: <cerebralpalsyclub@yahoogroups.com>
                                        Sent: Saturday, November 23, 2002 4:34 PM
                                        Subject: Re: [CEREBRAL PALSY CLUB] A good day
                                        > Ahh! :-) I'm in Minnesota...very liberal. :-) I'll
                                        > put up with cold, if it means being "allowed" to have
                                        > my own opinions.

                                        Oh, we're allowed to have our own opinions and mine are quite strong..it's
                                        still America afterall, it just means I'm often looked down upon for my
                                        belief and denied certain things because of them. Unfortunately, I can see
                                        that being more of a problem when I'm fighting for the rights of my child.
                                        > Do you consider herbs to be not natural? Nettle is an
                                        > herb. It would be something *you* would take, not
                                        > Kyleigh. I think "Mother's Milk" tea has nettle in it
                                        > and other milk-boosting herbs.

                                        Yes, I do consider herbs to be an added supplement and while more natural
                                        than your typical OTC medications, I don't take herbs either unless
                                        necessary. I have a strong belief in the body's ability to heal itself and
                                        as with Kyleigh...the more medical interference, often the worse the
                                        outcome. I'd just as soon leave well enough alone. However, if I do need a
                                        supplement, I'm far more likely to look towards more natural means such as
                                        herbs than your local pharmacy. Does that make sense??
                                        Christine K.
                                      • Julie and Joey
                                        ... Of course. It s just that in Minnesota, I m actually praised for having the beliefs I do and have yet to be denied anything because of them. Have you
                                        Message 19 of 23 , Nov 23, 2002
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                                          --- Christine wrote:
                                          > Oh, we're allowed to have our own opinions and mine
                                          > are quite strong..it's
                                          > still America afterall, it just means I'm often
                                          > looked down upon for my
                                          > belief and denied certain things because of them.

                                          Of course. It's just that in Minnesota, I'm actually
                                          praised for having the beliefs I do and have yet to be
                                          denied anything because of them. Have you checked the
                                          laws about vaccinating in SC? It may be illegal to
                                          deny treatment, just because you won't vaccinate. It
                                          doesn't sound right to me anyway.

                                          > Unfortunately, I can see
                                          > that being more of a problem when I'm fighting for
                                          > the rights of my child.

                                          Yep. We often accept things for ourselves that would
                                          be out of the question for our children. I guess it's
                                          that parental instict to protect our "cubs". :-)

                                          > I have a strong belief in the body's
                                          > ability to heal itself and
                                          > as with Kyleigh...the more medical interference,
                                          > often the worse the
                                          > outcome. I'd just as soon leave well enough alone.
                                          > However, if I do need a
                                          > supplement, I'm far more likely to look towards more
                                          > natural means such as
                                          > herbs than your local pharmacy. Does that make
                                          > sense??

                                          Yep. I only mentioned it because you said you were
                                          concerned with her size and weight gain. I agree with
                                          the body's ability to heal itself (which is why I
                                          don't believe in feeding tubes), but if you want to
                                          naturally fortify your milk and ease your concerns
                                          about her size, you have that option.

                                          =====
                                          Julie
                                          Mom to Joey 26-weeker, born January 12 '01. ~~~ 1 pound 6 ounces ~~~ http://community.webtv.net/Solace_2/FrancisJosephDavid ***"Look at the stars. Look how they shine for you and all the things you do"***

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                                        • Christine & Aaron Kramlich
                                          Have you checked the ... Well, the law does say that schooling and such can t be denied if I have a religious belief that says otherwise. Quite frankly, I d
                                          Message 20 of 23 , Nov 23, 2002
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                                            Have you checked the
                                            > laws about vaccinating in SC? It may be illegal to
                                            > deny treatment, just because you won't vaccinate. It
                                            > doesn't sound right to me anyway.

                                            Well, the law does say that schooling and such can't be denied if I have a
                                            religious belief that says otherwise. Quite frankly, I'd rather her not go
                                            to a pediatrician who was so closed minded but I don't think it's right that
                                            anyone be denied services for their beliefs.
                                            >
                                            > Yep. I only mentioned it because you said you were
                                            > concerned with her size and weight gain. I agree with
                                            > the body's ability to heal itself (which is why I
                                            > don't believe in feeding tubes), but if you want to
                                            > naturally fortify your milk and ease your concerns
                                            > about her size, you have that option.

                                            That's wonderful to know and I will certain keep that in mind should it
                                            become necessary to bolster her weight. Are there any alternate
                                            weight/height charts out there for CP babies? I know there are some for BF
                                            babies.
                                            Christine K.
                                          • Julie and Joey
                                            ... I hear you there. Our first ped was pretty closed-minded (and stupid IMO). We found the one we have now through Joey s therapist. ... You know, I m not
                                            Message 21 of 23 , Nov 23, 2002
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                                              --- Christine wrote:
                                              > Quite
                                              > frankly, I'd rather her not go
                                              > to a pediatrician who was so closed minded but I
                                              > don't think it's right that
                                              > anyone be denied services for their beliefs.

                                              I hear you there. Our first ped was pretty
                                              closed-minded (and stupid IMO). We found the one we
                                              have now through Joey's therapist.

                                              > Are there
                                              > any alternate
                                              > weight/height charts out there for CP babies? I
                                              > know there are some for BF
                                              > babies.

                                              You know, I'm not sure. We use the one for preemies,
                                              but I suppose if they have them for preemies and bf
                                              babies, they might also have them for CP babies.

                                              =====
                                              Julie
                                              Mom to Joey 26-weeker, born January 12 '01. ~~~ 1 pound 6 ounces ~~~ http://community.webtv.net/Solace_2/FrancisJosephDavid ***"Look at the stars. Look how they shine for you and all the things you do"***

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                                            • Julie and Joey
                                              http://www.people.virginia.edu/~mon-grow/ __________________________________________________ Do you Yahoo!? Yahoo! Mail Plus � Powerful. Affordable. Sign up
                                              Message 22 of 23 , Nov 23, 2002
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                                                http://www.people.virginia.edu/~mon-grow/

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