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Re: A good day

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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 1 of 23 , Nov 19, 2002
      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 2 of 23 , Nov 19, 2002
        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 3 of 23 , Nov 19, 2002
          --- 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 4 of 23 , Nov 20, 2002
            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 5 of 23 , Nov 20, 2002
              --- 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 6 of 23 , Nov 20, 2002
                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 7 of 23 , Nov 20, 2002
                  --- 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 8 of 23 , Nov 21, 2002
                    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 9 of 23 , Nov 21, 2002
                      --- 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 10 of 23 , Nov 21, 2002
                        > 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 11 of 23 , Nov 21, 2002
                          >
                          > 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 12 of 23 , Nov 23, 2002
                            --- 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 13 of 23 , Nov 23, 2002
                              > > 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 14 of 23 , Nov 23, 2002
                                --- 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 15 of 23 , Nov 23, 2002
                                  > > 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 16 of 23 , Nov 23, 2002
                                    --- 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 17 of 23 , Nov 23, 2002
                                      ----- 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 18 of 23 , Nov 23, 2002
                                        --- 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 19 of 23 , Nov 23, 2002
                                          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 20 of 23 , Nov 23, 2002
                                            --- 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 21 of 23 , Nov 23, 2002
                                              http://www.people.virginia.edu/~mon-grow/

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