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intro & GA info

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  • kelliern2002
    Hello all, My name is Kellie and I am the momma to six wonderful children including sweet Seth our almost 2y/o vent dependent, trached, g- tubed little
    Message 1 of 9 , Jan 2, 2006
      Hello all,
      My name is Kellie and I am the momma to six wonderful children
      including sweet Seth our almost 2y/o vent dependent, trached, g-
      tubed little pumpkin!! We are new to Georgia and would love any info
      you have regarding services. We live in Powder Springs (close to
      Marietta) we have been here for seven months now and still do not
      have any services in place. I have contacted the "babies can't wait"
      program many times but they just seem to be so disorganized and
      SLOW!!! We went to the local school district and they said they will
      not get involved until after Seth's 3rd birthday.
      Seth is doing well and we have only had one hospital stay down here
      (Scottish Rite). We get most of his care in Cinci where he sees the
      infamous Dr. Cotton and the Aerodigistive team. I thank god every
      day for this group of physicians and staff because I'm not sure Seth
      would be alive today without them.
      I would be intrested in networking with other parents here in
      Georgia and would love to attend any conferences or seminars
      regarding special needs children. Please share any info you may
      have. Thank you kindly, Kellie
      Blessed Momma to Madison 11, Keegan 5, Elijah & Riley 3 y/o twins,
      Seth & Samara almost 2y/o twins :)
    • keeley rodgers
      hi there, sorry i can not be of any service to you or your family as i live in the uk i hope you get the help u need. ... From: kelliern2002 To:
      Message 2 of 9 , Jan 3, 2006
        hi there, sorry i can not be of any service to you or your family as i live in the uk i hope you get the help u need.
        ----- Original Message -----
        Sent: Tuesday, January 03, 2006 3:24 AM
        Subject: [Tracheostomy_infants] intro & GA info

        Hello all,
        My name is Kellie and I am the momma to six wonderful children
        including sweet Seth our almost 2y/o vent dependent, trached, g-
        tubed little pumpkin!! We are new to Georgia and would love any info
        you have regarding services. We live in Powder Springs (close to
        Marietta) we have been here for seven months now and still do not
        have any services in place. I have contacted the "babies can't wait"
        program many times but they just seem to be so disorganized and
        SLOW!!! We went to the local school district and they said they will
        not get involved until after Seth's 3rd birthday.
        Seth is doing well and we have only had one hospital stay down here
        (Scottish Rite). We get most of his care in Cinci where he sees the
        infamous Dr. Cotton and the Aerodigistive team. I thank god every
        day for this group of physicians and staff because I'm not sure Seth
        would be alive today without them.
        I would be intrested in networking with other parents here in
        Georgia and would love to attend any conferences or seminars
        regarding special needs children. Please share any info you may
        have. Thank you kindly, Kellie
        Blessed Momma to Madison 11, Keegan 5, Elijah & Riley 3 y/o twins,
        Seth & Samara almost 2y/o twins :)   




      • melkemper@aol.com
        Hey Kellie: I don t know anything about services in Georgia - but I do know there are Federal Programs for children up to age 3. A good place to start would
        Message 3 of 9 , Jan 3, 2006
          Hey Kellie:
           
          I don't know anything about services in Georgia - but I do know there are Federal Programs for children up to age 3.
           
          A good place to start would be the NICHCY - www.hichcy.org
           
          Also, there is www.cdr.org and www.pathwaysawareness.org (many links in the parent's section).
           
          Lastly, my son, Henry, is a patient of Dr. Cotton's and also involved with the Aerodigistive team - and you are right on when you say you thank God everyday for them - we do too!
           
          Best of luck to you and I hope things go well for your family!
           
          Mel Kemper
          Mom of:
          Hilary, age 16
          Wilson, age 14, Severe Dyslexia & ADHA
          Charles, (twin) age 6, laryngo malasia (no more complications, in perfect health!!)
          Henry, (twin) age 6, laryngo malasia, collapsed upper airway from botched tonsillectomy, GERD, severe Obstructive Apnea, Trached at age 4.
           
           
           
           
          In a message dated 1/2/2006 9:25:41 P.M. Central Standard Time, kelliern2002@... writes:
          Hello all,
          My name is Kellie and I am the momma to six wonderful children
          including sweet Seth our almost 2y/o vent dependent, trached, g-
          tubed little pumpkin!! We are new to Georgia and would love any info
          you have regarding services. We live in Powder Springs (close to
          Marietta) we have been here for seven months now and still do not
          have any services in place. I have contacted the "babies can't wait"
          program many times but they just seem to be so disorganized and
          SLOW!!! We went to the local school district and they said they will
          not get involved until after Seth's 3rd birthday.
          Seth is doing well and we have only had one hospital stay down here
          (Scottish Rite). We get most of his care in Cinci where he sees the
          infamous Dr. Cotton and the Aerodigistive team. I thank god every
          day for this group of physicians and staff because I'm not sure Seth
          would be alive today without them.
          I would be intrested in networking with other parents here in
          Georgia and would love to attend any conferences or seminars
          regarding special needs children. Please share any info you may
          have. Thank you kindly, Kellie
          Blessed Momma to Madison 11, Keegan 5, Elijah & Riley 3 y/o twins,
          Seth & Samara almost 2y/o twins :)   






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        • natalie christmas
          Hi My name is Natalie and I am the mother to Gabe who has just turned 2 years old. We also have a trach and gtube. Gabe was diagnosed with subglottic stenosis
          Message 4 of 9 , Jan 25, 2006
            Hi
            My name is Natalie and I am the mother to Gabe who has just
            turned 2 years old. We also have a trach and gtube. Gabe was diagnosed with subglottic stenosis and his doctors at MCG in Augusta have mentioned him going to Cin. to have his reconstructive surgery. Dr.Cotton is the one who they are reccommending us too.
            I just wanted to know what you thought of Dr.Cotton and the staff at the Cin. childrens hospital.
            thanks
            natalie

            kelliern2002 <kelliern2002@...> wrote:
            Hello all,
            My name is Kellie and I am the momma to six wonderful children
            including sweet Seth our almost 2y/o vent dependent, trached, g-
            tubed little pumpkin!! We are new to Georgia and would love any info
            you have regarding services. We live in Powder Springs (close to
            Marietta) we have been here for seven months now and still do not
            have any services in place. I have contacted the "babies can't wait"
            program many times but they just seem to be so disorganized and
            SLOW!!! We went to the local school district and they said they will
            not get involved until after Seth's 3rd birthday.
            Seth is doing well and we have only had one hospital stay down here
            (Scottish Rite). We get most of his care in Cinci where he sees the
            infamous Dr. Cotton and the Aerodigistive team. I thank god every
            day for this group of physicians and staff because I'm not sure Seth
            would be alive today without them.
            I would be intrested in networking with other parents here in
            Georgia and would love to attend any conferences or seminars
            regarding special needs children. Please share any info you may
            have. Thank you kindly, Kellie
            Blessed Momma to Madison 11, Keegan 5, Elijah & Riley 3 y/o twins,
            Seth & Samara almost 2y/o twins :)   






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          • kellie davidson
            Greetings, So glad you emailed!! My sweet baby Seth also just turned 2 (jan. 7) I honestly could not speak highly enough of Cincinnati Children s Hospital. I
            Message 5 of 9 , Jan 25, 2006
              Greetings,
              So glad you emailed!! My sweet baby Seth also just turned 2 (jan. 7) I honestly could not speak highly enough of Cincinnati Children's Hospital. I truly believe that Seth  would not be alive today if it were not for the fine team of physicians & staff  up there!! It is a fantastic hospital, everyone, and I mean everyone is so focused on the entire family. They are a "family based care" hospital and they live up to there philosophy.
              Now on Dr. Cotton, he is a medical marvel but his people skills are a little rough. We actually see Dr. Elleru now and he is so wonderful (check out cincis web site and you can see all the docs and there credentials I believe he is the only one with his MD & PhD)  he has two young daughters 3 y/o & 7 months so he can really relate to the parents!! We see the aerodigestive team so all the docs get together every Wednesday morning and they talk just about what is going on with aero kids. To be with the aero team you have to have certain, multiple diagnosis. Then you get to have a pulm, gastro, ENT, feeding team (pt & ot & nutritionist), Nurse practitioner and social worker who all get to know your child well and they all work together to help your child have the best quality of life. They are just fantastic and I would not go anywhere else in the world!! What type of reconstruction does Gabe need? When did they think he could have it done? Sometimes it takes 3-4 months to get an appt. in Cincinnati. please email back I would love to have someone down here to chat with.
              Warm Regards,
              Kellie

              natalie christmas <nat41481@...> wrote:
              Hi
              My name is Natalie and I am the mother to Gabe who has just
              turned 2 years old. We also have a trach and gtube. Gabe was diagnosed with subglottic stenosis and his doctors at MCG in Augusta have mentioned him going to Cin. to have his reconstructive surgery. Dr.Cotton is the one who they are reccommending us too.
              I just wanted to know what you thought of Dr.Cotton and the staff at the Cin. childrens hospital.
              thanks
              natalie

              kelliern2002 <kelliern2002@...> wrote:
              Hello all,
              My name is Kellie and I am the momma to six wonderful children
              including sweet Seth our almost 2y/o vent dependent, trached, g-
              tubed little pumpkin!! We are new to Georgia and would love any info
              you have regarding services. We live in Powder Springs (close to
              Marietta) we have been here for seven months now and still do not
              have any services in place. I have contacted the "babies can't wait"
              program many times but they just seem to be so disorganized and
              SLOW!!! We went to the local school district and they said they will
              not get involved until after Seth's 3rd birthday.
              Seth is doing well and we have only had one hospital stay down here
              (Scottish Rite). We get most of his care in Cinci where he sees the
              infamous Dr. Cotton and the Aerodigistive team. I thank god every
              day for this group of physicians and staff because I'm not sure Seth
              would be alive today without them.
              I would be intrested in networking with other parents here in
              Georgia and would love to attend any conferences or seminars
              regarding special needs children. Please share any info you may
              have. Thank you kindly, Kellie
              Blessed Momma to Madison 11, Keegan 5, Elijah & Riley 3 y/o twins,
              Seth & Samara almost 2y/o twins :)   






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              With a free 1 GB, there's more in store with Yahoo! Mail.

            • Karin Hardman
              Hi all, I was just wondering if anyone else has had a hard time finding clothes that will work for our darling little ones? I can t use envelope shirts or
              Message 6 of 9 , Jan 26, 2006
                Hi all,

                I was just wondering if anyone else has had a hard time finding
                clothes that will work for our darling little ones? I can't use
                envelope shirts or regular t-shirts as they cover dd's trach and any
                kind of onesie makes it nearly impossible to feed her. She still
                eats Q3 with continuous at night. Maybe my baby is just super fat
                but I still don't like anything too close to her neck. I've also
                noticed that when she manages to get her own secretions out, it gets
                all over the clothes and stains them. I'd been using side snap
                shirts, but she's getting too big for any size I can find in the store.

                Well someone on another list I am on has found these shirts from
                Japan that I thought would work great. She's getting an order ready
                n the next week or so and I thought I'd ask all of you if it would b
                helpful to anyone here. I haven't tried them myself yet, but from
                what I've heard they are wonderful. Here's the web address:
                http://www.japan-zone.com/store/baby.shtml

                What do some of you use? Have you had to modify your little ones
                clothing at all?

                thanks!

                Karin
              • ttimes33@juno.com
                I ve been either using things that button/snap down the front -- and leaving a few of the top snaps/buttons open or else I ve also been sewing some new stuff
                Message 7 of 9 , Jan 26, 2006
                  I've been either using things that button/snap down the front -- and
                  leaving a few of the top snaps/buttons open or else I've also been sewing
                  some new stuff for him, using a pattern with a v-neck & snap opening. If
                  you sew, or know somebody who does, check out www.ottobredesign.com ,
                  click the link on the left side for English & you or they can browse the
                  issues on the bottom. The particular t-shirt pattern I like for trach kid
                  is design #1 in the 1/2005 issue. You can also see some pics in my album:
                  http://forums.quiltropolis.net/photos/photo-thumbnails.asp?albumid=1123
                  The first 2 outfits in that album and also the last outfit in it (the
                  last outfit, with the plaid pants, on the second page of the album).

                  Hanna Andersson also has a side closing shirt with a v-neck that comes up
                  to size 90cm (about a size 3), though they only have it in one print per
                  season.

                  Hope this helps,
                  Margaret


                  On Thu, 26 Jan 2006 07:30:11 -0700 Karin Hardman <belcantomom@...>
                  writes:
                  > Hi all,
                  >
                  > I was just wondering if anyone else has had a hard time finding
                  > clothes that will work for our darling little ones? I can't use
                  > envelope shirts or regular t-shirts as they cover dd's trach and any
                  >
                  > kind of onesie makes it nearly impossible to feed her. She still
                  > eats Q3 with continuous at night. Maybe my baby is just super fat
                  >
                  > but I still don't like anything too close to her neck. I've also
                  > noticed that when she manages to get her own secretions out, it gets
                  >
                  > all over the clothes and stains them. I'd been using side snap
                  > shirts, but she's getting too big for any size I can find in the
                  > store.
                  >
                  > Well someone on another list I am on has found these shirts from
                  > Japan that I thought would work great. She's getting an order ready
                  >
                  > n the next week or so and I thought I'd ask all of you if it would b
                  >
                  > helpful to anyone here. I haven't tried them myself yet, but from
                  >
                  > what I've heard they are wonderful. Here's the web address:
                  > http://www.japan-zone.com/store/baby.shtml
                  >
                  > What do some of you use? Have you had to modify your little ones
                  > clothing at all?
                  >
                  > thanks!
                  >
                  > Karin
                  >
                  >
                  > Community email addresses:
                  > Post message: Tracheostomy_infants@onelist.com
                  > Subscribe: Tracheostomy_infants-subscribe@onelist.com
                  > Unsubscribe: Tracheostomy_infants-unsubscribe@onelist.com
                  > List owner: Tracheostomy_infants-owner@onelist.com
                  >
                  > Shortcut URL to this page:
                  > http://www.onelist.com/community/Tracheostomy_infants
                  > Yahoo! Groups Links
                  >
                  >
                  >
                  >
                  >
                  >
                  >
                  >
                  >
                • picturesinstatic@aol.com
                  karin, i think it s easier for little boys because there are so many more polo-type shirts and button-up shirts for boys than there are for girls. that s what
                  Message 8 of 9 , Jan 26, 2006
                    karin,
                     
                    i think it's easier for little boys because there are so many more polo-type shirts and button-up shirts for boys than there are for girls. that's what i always put my son in, and just leave the top one or two buttons open.
                     
                    american apparel also used to have very cute plain baby shirts with v-necks in lots and lots of colors. not sure if they do anymore though, i don't see them on the website.
                     
                    rena
                  • Donna Casady
                    My 9 month old has been able to wear crewneck onsies with no problem. Sometimes the top of it gets in front of her trach, but it s not tight enough to cut off
                    Message 9 of 9 , Jan 26, 2006
                      My 9 month old has been able to wear crewneck onsies with no problem.
                      Sometimes the top of it gets in front of her trach, but it's not tight
                      enough to cut off her ability to breathe. Her secretions do always get on
                      her clothes, but they wash out with Oxy Clean sprayed on them. She even
                      sleeps in onesies. We just leave the bottom unsnapped and have the wires
                      and feeding extension coming out of the bottom and then going over toward
                      the side of her crib. If she's wearing something that snaps or buttons up
                      the front at night, we snap it up or button it up and have the wires and
                      extension coming from between the snaps or buttons. We haven't found
                      clothing to be a big problem, but I have noticed that necks with collars
                      don't do as well unless it also has buttons or snaps. She has one dress
                      with a collar and no opening at the neck and it doesn't seem as comfortable
                      for her, covers the trach most of the time.

                      During the daytime if she's wearing a onesie (which she does almost
                      everyday), we just simply unsnap it for feeding. We haven't modified any
                      clothing because of the trach or g-tube.

                      Donna
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