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Re: New Trach Mom

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  • Melissa Gallagher
    Hi Michelle, welcome to our wonderful group and congratulations on you son s birth! My son Carson is 13 months old and has had his trach for about 5 months.
    Message 1 of 6 , May 2, 2006
      Hi Michelle, welcome to our wonderful group and congratulations on
      you son's birth!

      My son Carson is 13 months old and has had his trach for about 5
      months. He was born with Smith-Lemli-Opitz Syndrome (SLOS), a
      genetic disorder where his body does not produce cholesterol. He
      was born with a lot of birth defects, one of which is small/recessed
      jaw. He had (and still has) no suck/swallow reflex so we ng fed him
      for six months and finally had a g-tube put in last September.

      Carson's trach was put in because of a deadly aspiration pneumonia.
      He could not breathe b/c his airway was so swollen and full of
      secretions. The trach was the only option to save his life. In two
      weeks, Carson is having a tonsillectomy/adenoidectomy along with a
      bronchoscopy/laryngscopy in hopes that removing them will open his
      airway more and we can soon get rid of the trach!

      There are many levels of severity for SLOS and each child develops
      differently, so rather than compare Carson to other kids with or
      without SLOS, I've learned to accept what he can do and he does
      amaze me all the time. I know that in his own time he will show us
      each of his unique abilities. At 13 months, he still can't sit up,
      roll over, crawl, etc...but he is a very, very happy baby and makes
      us laugh and smile every day. We give him lots of physical, speech,
      and feeding therapy and are letting him progress at his own rate :)

      Carson doesn't get tons of tummy time, I like to use the boppy or
      prop him up on my leg. I just bought a Physio-Roll (30cm) that he
      loves. Our PT always brought one to the house so I finally bought
      one and it has been great for Carson, especially for tummy time.

      I know how easy it can be to fixate on wanting your child to "catch
      up" and do typical baby stuff. Hayden has been through a lot and
      I'm sure that over time he will start to progress more and more.
      For now, enjoy the little things that he's doing and don't be too
      upset if he's not on track with the development stuff. It will all
      fall into place eventually as he gets bigger and stronger.

      Again, congrats and welcome! If you want to read more about Carson,
      check out his website at www.thegallagherfamily.info.

      Melissa (Carson, 13 months)
      >
      > Hi everyone,
      > I just joined and I wanted to introduce myself. My name is
      Michelle
      > and my son Hayden has had his trach for about 2 months now.
      >
      > Hayden was born on 1/21/06. He has multiple chromosome
      > abnormalities, which caused his jaw to be slightly
      recessed...hence
      > the trach. Hayden also has a G-tube because he will not feed
      > orally. He was intibated for the first couple of weeks of his
      life
      > and never grabbed on to the whole sucking, swallowing, and
      breathing
      > concept. We will be having a speech therapist come into our home
      to
      > work with him, and hopefully he'll catch on pretty quick now that
      > his throat isn't irritated from tubing.
      >
      > Hayden is doing really well with his trach. We're just so glad to
      > finally have him home-we spent the first 10 weeks of his life in
      the
      > NICU. Right now my concerns are with his development. With the
      > chromosome abnormalities, it may be a bumpy road. Hayden just
      > turned 3 months. He is doing a great job holding his head up, but
      > still needs a little help. We can't really give him the "tummy-
      > time" he needs to get the head control because he G-tube bothers
      him
      > when he put him on his stomach. His arms and legs have really
      been
      > moving the last 2 weeks or so. He's still not grabbing for
      things,
      > but he's getting there. I was hoping someone could shed a little
      > light on if your child eventually caught up, or were always a
      little
      > behind.
      >
      > I'm really glad a found a board that people will actually
      understand
      > what my husband and I are going thru. I look forward to getting
      to
      > know all of you!
      >
    • Peter Fairbrother
      Hi there! Our son Joe has had a trachy since he was 8 weeks old. He is now 18mths old and doing really well. He is way smaller than most of his peers but makes
      Message 2 of 6 , May 7, 2006
        Hi there!
         
        Our son Joe has had a trachy since he was 8 weeks old. He is now 18mths old and doing really well. He is way smaller than most of his peers but makes up for it in personality. His development is slightly delayed but not so bad. People often stare and ask how come such a small baby is walking!
         
        My advice would be not to compare and just take each mile stone as it comes in your own time. Good Luck!
         
        Julia

        Melissa Gallagher <mgallagher051603@...> wrote:
        Hi Michelle, welcome to our wonderful group and congratulations on
        you son's birth!

        My son Carson is 13 months old and has had his trach for about 5
        months.  He was born with Smith-Lemli-Opitz Syndrome (SLOS), a
        genetic disorder where his body does not produce cholesterol.  He
        was born with a lot of birth defects, one of which is small/recessed
        jaw.  He had (and still has) no suck/swallow reflex so we ng fed him
        for six months and finally had a g-tube put in last September.

        Carson's trach was put in because of a deadly aspiration pneumonia. 
        He could not breathe b/c his airway was so swollen and full of
        secretions.  The trach was the only option to save his life.  In two
        weeks, Carson is having a tonsillectomy/adenoidectomy along with a
        bronchoscopy/laryngscopy in hopes that removing them will open his
        airway more and we can soon get rid of the trach!  

        There are many levels of severity for SLOS and each child develops
        differently, so rather than compare Carson to other kids with or
        without SLOS, I've learned to accept what he can do and he does
        amaze me all the time.  I know that in his own time he will show us
        each of his unique abilities.  At 13 months, he still can't sit up,
        roll over, crawl, etc...but he is a very, very happy baby and makes
        us laugh and smile every day.  We give him lots of physical, speech,
        and feeding therapy and are letting him progress at his own rate :)

        Carson doesn't get tons of tummy time, I like to use the boppy or
        prop him up on my leg.  I just bought a Physio-Roll (30cm) that he
        loves.  Our PT always brought one to the house so I finally bought
        one and it has been great for Carson, especially for tummy time.

        I know how easy it can be to fixate on wanting your child to "catch
        up" and do typical baby stuff.  Hayden has been through a lot and
        I'm sure that over time he will start to progress more and more. 
        For now, enjoy the little things that he's doing and don't be too
        upset if he's not on track with the development stuff.  It will all
        fall into place eventually as he gets bigger and stronger.

        Again, congrats and welcome!  If you want to read more about Carson,
        check out his website at www.thegallagherfamily.info.

        Melissa (Carson, 13 months)
        >
        > Hi everyone,
        > I just joined and I wanted to introduce myself.  My name is
        Michelle
        > and my son Hayden has had his trach for about 2 months now.
        >
        > Hayden was born on 1/21/06.  He has multiple chromosome
        > abnormalities, which caused his jaw to be slightly
        recessed...hence
        > the trach.  Hayden also has a G-tube because he will not feed
        > orally.  He was intibated for the first couple of weeks of his
        life
        > and never grabbed on to the whole sucking, swallowing, and
        breathing
        > concept.  We will be having a speech therapist come into our home
        to
        > work with him, and hopefully he'll catch on pretty quick now that
        > his throat isn't irritated from tubing.
        >
        > Hayden is doing really well with his trach.  We're just so glad to
        > finally have him home-we spent the first 10 weeks of his life in
        the
        > NICU.  Right now my concerns are with his development.  With the
        > chromosome abnormalities, it may be a bumpy road.  Hayden just
        > turned 3 months.  He is doing a great job holding his head up, but
        > still needs a little help.  We can't really give him the "tummy-
        > time" he needs to get the head control because he G-tube bothers
        him
        > when he put him on his stomach.  His arms and legs have really
        been
        > moving the last 2 weeks or so.  He's still not grabbing for
        things,
        > but he's getting there.  I was hoping someone could shed a little
        > light on if your child eventually caught up, or were always a
        little
        > behind.
        >
        > I'm really glad a found a board that people will actually
        understand
        > what my husband and I are going thru.  I look forward to getting
        to
        > know all of you!
        >






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