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Re: [CEREBRAL PALSY CLUB] Digest Number 674

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  • Jenna Canfield
    Hi Jena, Thanks for your reply, it sounds like you are really dedicated to your son and your other children and foster children, you must be a very busy woman.
    Message 1 of 5 , May 29 9:56 AM
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      Hi Jena,
      Thanks for your reply, it sounds like you are really dedicated to your son and your other children and foster children, you must be a very busy woman. These kids are blessings for all of us, Jasper has brought many smiles and warmed many hearts in his mere 9 months here and we feel so lucky that he is alive and full of love. Glad you liked the pics, we like U2 also, hence the cover band, BONOr will be travelling around california this summer, how fun!
      Hope you and your family are well, glad to see such positivity and love in such a special family.
      take care, Jenna

      cerebralpalsyclub@yahoogroups.com wrote:

      There are 2 messages in this issue.

      Topics in this digest:

      1. motor delays
      From: "Jenna Gonzales"
      2. Jenna
      From: "Jena"


      ________________________________________________________________________
      ________________________________________________________________________

      Message: 1
      Date: Sun, 22 May 2005 02:47:20 -0000
      From: "Jenna Gonzales"
      Subject: motor delays

      Hi, thanks for all your responses to the motor delay question.
      I have hope that Jasper will gain better trunk and head control and
      be able to relax enough to sit up (his hips are very tight) and be
      comfortable in a carseat or other seat. It is comforting to know that
      other people have been through this carseat drama and survived.
      Jasper just had a G-tube placed about two weeks ago, he is recovering
      well except for slight infection around the stoma, and some
      granulation tissue. We are treating them with antibiotics and topical
      cream.
      He seems to be sleeping better at night, but now he hardly ever
      nurses and I am getting sad to realize that he seems to be weaning
      himself. I wanted to nurse him much longer, but I'm having another
      baby in October so that will be a challenge in itself. Does anyone
      else have a child with CP and another one so close after, (they will
      be 14 months apart) I would love any advice I can get.
      We have been doing HBOT with Jasper for a little while now, it is
      expensive and a bit of a drive, no fun with a screaming baby, but it
      seems to have helped Jasper's vision slightly. We are trying to
      raise money to buy a hyperbaric chamber so that there will be one in
      the community and we and others can use it without driving so far.
      my husband is doing a fundrasing music benefit, little project with
      his buddy, they are a two man acoustic band playing the music of U2-
      so after U2's lead singer they are calling themselves BONOr (silly)
      and they dress up like Bono and Sledge (backup). They are having fun
      and will hopefully raise money to buy the chamber. If you want to
      check them out look at the website www.bonorrocks.com - there is also
      a donations link.... if anyone knows where to get grants for things
      like this I would be interested. Hope all your children are doing
      well, thanks again for your words of advice and encouragement.
      sincerely, Jenna (sweet Jasper's mama)





      ________________________________________________________________________
      ________________________________________________________________________

      Message: 2
      Date: Sun, 22 May 2005 08:09:56 -0500
      From: "Jena"
      Subject: Jenna

      Hi Jenna,
      What a sweet looking baby boy! My son is 16 and suffered a hypoxic birth injury. Cord around his neck, born still, 20 minuets to get him stable. He has severe SQCP {you can read my sig. for more} He is the sweetest boy! We are so blessed by God for him! I wish you luck on your fund raising. BTW U2 is awesome! Take Care,Jena mom to Kyle,16 with severe SQCP, Seizure Disorder,
      Lung Issues, Dysphasia, GERD, G-Tube fed, Glasses,
      Hearing Aids, wrist splints, AFO's, PM Night Knee Splints,
      Wheel Chair full time, The Vest Air Way Clearance System,
      Mouth and Nasal Suctioning, Stander and Walker. Walks
      in school with PT when wants too and has taken 65 steps!
      Proverbs 31: 8 & 9

      Shannon 23 CNA and job helper for disabled young man. Very
      good Morgan horse rider!

      Kyilee 5 Shannon's daughter, language process disorder,
      Anxiety and Sensory dysfunction. Very good Morgan
      horse rider!

      Amanda 21 CNA

      Nicole 18 homeschool graduate

      Stephanie 15 homeschooling, very good Morgan horse rider.

      Many foster and respite special needs kids and waiting to adopt a
      new son with special needs. Pray it works out!



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



      ________________________________________________________________________
      ________________________________________________________________________



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    • (ARISTOTLE)
      It has been quite a journey. My wife and I have been caregivers for 41 years. When he was younger it seemed to be easier. Now he is so big and the difficulty
      Message 2 of 5 , Jun 18, 2005
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        It has been quite a journey. My wife and I have been caregivers for 41
        years. When he was younger it seemed to be easier. Now he is so big and
        the difficulty is greater because my wife and I are now in our 60s. I
        wish I could tell some of you otherwise, but it
        doesn't get easier.

        Of course he is dear to us and we do all we can to make his life easier,
        but in the process we have to give up so much ourselves. When we were
        younger and his brother and sister were younger and at home it was a big
        help to us and we could have more of a life. But, those days are long
        gone. And sometimes problems develop with sibling that you don't
        anticipate. His sister is great and still provides us with help, but his
        brother, who is also older than he is (by about 6 years) stays as far away
        from us and his brother as he can. Not that he isn't loveable, just very
        distant on purpose.

        We are experiencing some new problems. Rick is on medicare and for about
        the last half a dozen years or so he has been classed as a "family of one"
        and receives medicaid also. However no one wants to take medicaid here. It
        is good for covering his scripts but little else locally and for medical
        care we are limited and the doctors seem to know less than they did when
        he was younger. We take him to a university hospital about 40 miles away
        and I'm not at all pleased with the care he receives there.

        He now has a very acute knee problem. He needs it drained on a regular
        basis and scar tissue is building up to where treatment is problematic. It
        is painful for him too. His diet is restricted because he has difficulty
        swallowing also. There is much more but I won't bore you. If anyone is
        interested and has some similar experiences they would like to talk about,
        write me.

        Hank Roth
      • Debra Marasco-McNulty
        Hi Hank, Where does your family live? Debra M-Mc (ARISTOTLE) wrote: It has been quite a journey. My wife and I have been caregivers
        Message 3 of 5 , Jun 20, 2005
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          Hi Hank,
          Where does your family live?

          Debra M-Mc

          "(ARISTOTLE)" <aristotle@...> wrote:

          It has been quite a journey. My wife and I have been caregivers for 41
          years. When he was younger it seemed to be easier. Now he is so big and
          the difficulty is greater because my wife and I are now in our 60s. I
          wish I could tell some of you otherwise, but it
          doesn't get easier.

          Of course he is dear to us and we do all we can to make his life easier,
          but in the process we have to give up so much ourselves. When we were
          younger and his brother and sister were younger and at home it was a big
          help to us and we could have more of a life. But, those days are long
          gone. And sometimes problems develop with sibling that you don't
          anticipate. His sister is great and still provides us with help, but his
          brother, who is also older than he is (by about 6 years) stays as far away
          from us and his brother as he can. Not that he isn't loveable, just very
          distant on purpose.

          We are experiencing some new problems. Rick is on medicare and for about
          the last half a dozen years or so he has been classed as a "family of one"
          and receives medicaid also. However no one wants to take medicaid here. It
          is good for covering his scripts but little else locally and for medical
          care we are limited and the doctors seem to know less than they did when
          he was younger. We take him to a university hospital about 40 miles away
          and I'm not at all pleased with the care he receives there.

          He now has a very acute knee problem. He needs it drained on a regular
          basis and scar tissue is building up to where treatment is problematic. It
          is painful for him too. His diet is restricted because he has difficulty
          swallowing also. There is much more but I won't bore you. If anyone is
          interested and has some similar experiences they would like to talk about,
          write me.

          Hank Roth




          ---------------------------------
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          [Non-text portions of this message have been removed]
        • (ARISTOTLE)
          We are in Morriston, which is just outside of Ocala, Florida. Hank
          Message 4 of 5 , Jun 28, 2005
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            We are in Morriston, which is just outside of Ocala, Florida.

            Hank

            On Mon, 20 Jun 2005, Debra Marasco-McNulty wrote:

            > Hi Hank,
            > Where does your family live?
            >
            > Debra M-Mc
            >
            > "(ARISTOTLE)" <aristotle@...> wrote:
            >
            > It has been quite a journey. My wife and I have been caregivers for 41
            > years. When he was younger it seemed to be easier. Now he is so big and
            > the difficulty is greater because my wife and I are now in our 60s. I
            > wish I could tell some of you otherwise, but it
            > doesn't get easier.
            >
            > Of course he is dear to us and we do all we can to make his life easier,
            > but in the process we have to give up so much ourselves. When we were
            > younger and his brother and sister were younger and at home it was a big
            > help to us and we could have more of a life. But, those days are long
            > gone. And sometimes problems develop with sibling that you don't
            > anticipate. His sister is great and still provides us with help, but his
            > brother, who is also older than he is (by about 6 years) stays as far away
            > from us and his brother as he can. Not that he isn't loveable, just very
            > distant on purpose.
            >
            > We are experiencing some new problems. Rick is on medicare and for about
            > the last half a dozen years or so he has been classed as a "family of one"
            > and receives medicaid also. However no one wants to take medicaid here. It
            > is good for covering his scripts but little else locally and for medical
            > care we are limited and the doctors seem to know less than they did when
            > he was younger. We take him to a university hospital about 40 miles away
            > and I'm not at all pleased with the care he receives there.
            >
            > He now has a very acute knee problem. He needs it drained on a regular
            > basis and scar tissue is building up to where treatment is problematic. It
            > is painful for him too. His diet is restricted because he has difficulty
            > swallowing also. There is much more but I won't bore you. If anyone is
            > interested and has some similar experiences they would like to talk about,
            > write me.
            >
            > Hank Roth
            >
            >
            >
            >
            > ---------------------------------
            > Yahoo! Groups Links
            >
            > To visit your group on the web, go to:
            > http://groups.yahoo.com/group/cerebralpalsyclub/
            >
            > To unsubscribe from this group, send an email to:
            > cerebralpalsyclub-unsubscribe@yahoogroups.com
            >
            > Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
            >
            >
            >
            > [Non-text portions of this message have been removed]
            >
            >
            >
            >
            > Yahoo! Groups Links
            >
            >
            >
            >
            >
            >
            >
          • iamateacher48
            -- Hank.. It good to hear from someone who has an older child with C.P. It is always a worry about what the future will be like. We are in our late 40 s and
            Message 5 of 5 , Jun 29, 2005
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              -- Hank..
              It good to hear from someone who has an older child with C.P. It
              is always a worry about what the future will be like. We are in our
              late 40's and our son with C.P. will turn 12 at the end of the
              summmer. Although we still have atleast 10 more years for him to be in
              school...I do worry about what happens after that. We are trying to
              modify our house to accomadate him. Right now we live in the basement
              floor of our house. We have access to come in and out with a small
              ramp for help. Our bedrooms are on this level as well as a small
              kitchen and very small living room. The problem is we do not have a
              bathroom down here. We carry him upstairs for a big bath once a week
              and then he gets bed baths. It makes me angry with myself that I can't
              carry him anymore. I am feeling my age. We have two older daughters
              that are wonderful with him and help out as often as they can. Please
              write again.
              El

              - In cerebralpalsyclub@yahoogroups.com, "(ARISTOTLE)" <aristotle@c...>
              wrote:
              >
              > We are in Morriston, which is just outside of Ocala, Florida.
              >
              > Hank
              >
              > On Mon, 20 Jun 2005, Debra Marasco-McNulty wrote:
              >
              > > Hi Hank,
              > > Where does your family live?
              > >
              > > Debra M-Mc
              > >
              > > "(ARISTOTLE)" <aristotle@c...> wrote:
              > >
              > > It has been quite a journey. My wife and I have been caregivers
              for 41
              > > years. When he was younger it seemed to be easier. Now he is so
              big and
              > > the difficulty is greater because my wife and I are now in our 60s. I
              > > wish I could tell some of you otherwise, but it
              > > doesn't get easier.
              > >
              > > Of course he is dear to us and we do all we can to make his life
              easier,
              > > but in the process we have to give up so much ourselves. When we were
              > > younger and his brother and sister were younger and at home it was
              a big
              > > help to us and we could have more of a life. But, those days are long
              > > gone. And sometimes problems develop with sibling that you don't
              > > anticipate. His sister is great and still provides us with help,
              but his
              > > brother, who is also older than he is (by about 6 years) stays as
              far away
              > > from us and his brother as he can. Not that he isn't loveable,
              just very
              > > distant on purpose.
              > >
              > > We are experiencing some new problems. Rick is on medicare and for
              about
              > > the last half a dozen years or so he has been classed as a "family
              of one"
              > > and receives medicaid also. However no one wants to take medicaid
              here. It
              > > is good for covering his scripts but little else locally and for
              medical
              > > care we are limited and the doctors seem to know less than they
              did when
              > > he was younger. We take him to a university hospital about 40
              miles away
              > > and I'm not at all pleased with the care he receives there.
              > >
              > > He now has a very acute knee problem. He needs it drained on a
              regular
              > > basis and scar tissue is building up to where treatment is
              problematic. It
              > > is painful for him too. His diet is restricted because he has
              difficulty
              > > swallowing also. There is much more but I won't bore you. If
              anyone is
              > > interested and has some similar experiences they would like to
              talk about,
              > > write me.
              > >
              > > Hank Roth
              > >
              > >
              > >
              > >
              > > ---------------------------------
              > > Yahoo! Groups Links
              > >
              > > To visit your group on the web, go to:
              > > http://groups.yahoo.com/group/cerebralpalsyclub/
              > >
              > > To unsubscribe from this group, send an email to:
              > > cerebralpalsyclub-unsubscribe@yahoogroups.com
              > >
              > > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
              Service.
              > >
              > >
              > >
              > > [Non-text portions of this message have been removed]
              > >
              > >
              > >
              > >
              > > Yahoo! Groups Links
              > >
              > >
              > >
              > >
              > >
              > >
              > >
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