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Baby equipment

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  • happyhouseachon
    Hi everyone, I ve just signed up to the Achon UK site last week. Great this network exists so don t feel so alone. Medical advice from specialists seems to be
    Message 1 of 6 , Feb 12, 2012
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      Hi everyone,

      I've just signed up to the Achon UK site last week. Great this network exists so don't feel so alone. Medical advice from specialists seems to be easier to obtain than the emotional support from others experiencing the same condition.

      We have a beautiful little boy (3.5 months old) who was diagnosed pre-natally with the condition. Slowly coming to terms with it and can start to reach out to others now.

      Would very much appreciate any suggestions on:
      1) baby seat (rocker) that provides good level of back support - I've spotted a number of other babies using them in the lovely photos
      2) buggies that provide adequate back support
      Guidelines from specialists are very useful but they don't seem to go as far as making recommedations on equipment !

      Kind regards
      Rachel
    • Kim Chai
      Hi Rachel The world welcome your little boy and congratulations. I hope someone is able to respond to your request and indeed it helps him throughout his
      Message 2 of 6 , Feb 13, 2012
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        Hi Rachel

        The world welcome your little boy and congratulations. I hope someone is able to respond to your request and indeed it helps him throughout his growth. Probably your physiotherapist can also suggest about his fingers and legs shaped to prevent bending. Do start giving those physio exercises soon? 

        All the very best wishes and enjoy time with him.
         
        Kim Chai


        From: happyhouseachon <hahn1@...>
        To: achondroplasiauk@...
        Sent: Sunday, 12 February 2012, 23:37
        Subject: [achondroplasiauk] Baby equipment

         
        Hi everyone,

        I've just signed up to the Achon UK site last week. Great this network exists so don't feel so alone. Medical advice from specialists seems to be easier to obtain than the emotional support from others experiencing the same condition.

        We have a beautiful little boy (3.5 months old) who was diagnosed pre-natally with the condition. Slowly coming to terms with it and can start to reach out to others now.

        Would very much appreciate any suggestions on:
        1) baby seat (rocker) that provides good level of back support - I've spotted a number of other babies using them in the lovely photos
        2) buggies that provide adequate back support
        Guidelines from specialists are very useful but they don't seem to go as far as making recommedations on equipment !

        Kind regards
        Rachel



      • Chris
        Hi Rachel, Congratualtions on the birth of your son ands welcome to the forums! Our Daughter Olivia is now 14 months old, and the forums here have been really
        Message 3 of 6 , Feb 15, 2012
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          Hi Rachel,

          Congratualtions on the birth of your son ands welcome to the forums! Our Daughter Olivia is now 14 months old, and the forums here have been really useful to us.
          You'll find everyone on here really helpful, and if you look over the last few posts there have been some really good links to leaflets and information resources.

          If you are looking for more chat and support online, you could look at the facebook forums for

          LPUK http://www.lpukonline.org/ a fledging group and wildly enthusiastic and sociable!

          DSA https://www.facebook.com/DSAUK The Dwarf Sports Association - hold an annual sports event which is very popular and has events for children of all ages.


          and RGA http://www.facebook.com/groups/4625869799/ long established and with lots of experience and information


          Regarding equipment, you won't currently find anything that is specifically approved for achondroplasia as far as I'm aware, but the same general principles apply - that is to lie flat when possible, and to make sure your son's head and neck are supported. The hypotionia (weak muscles) and proportionally larger head will mean that he might find head control harder and more tiring than other children of a similar age.

          When Ollie was little, we used a Mamas and Papas Starlite swing. Although it's a bit pricey, we found it worked really well. It has good, solid back support, reclines well, and Ollie really liked the light show!
          http://www.mamasandpapas.com/product-starlite-swing-once-upon-a-time/470516000/type-i/
          Bouncy baby rockers are generally thought not to give enough support, but you quite often see them used with a magazine tucked down the back to provide a bit more rigidity.


          We already had a Britax Vigour travel system (Ollie has a big brother) which worked well for us - there was a pram attatchment which we used a lot until she was about 9 months old (and started wriggling too much to use it),and a car seat that clips onto the frame (although this isn't ideal for her back, she isn't usually in it for very long). It is recommended that you keep your son in a backward facing seat for as long as possible.
          If you are looking for a specific car seat, there are "lie flat" seats available, and in the south of england the best stockinst is apparently http://www.incarsafetycentre.co.uk/ in Milton Keynes.
          (I beleive there is a similar centre near Leeds, but I don' t have any contact details).

          As Ollie got older, and more confident sitting, we started using her brother's high chair http://www.svan.com/svan-high-chair.php It was already highly adjustable, but because of her size it needed extra hip padding, extra cushioning behind her, and extra padding on the footplate which I made from a carrymat(The Physiotherapist and Paediatrician both winced at the idea until they saw it).

          Through our OT we ordered a Jenx Bee chair http://www.jenx.com/products/seating/bee as this provides lots of back support - the idea being that if she didn't have to worry about back stability she could better improve her hand/eye motor skills through playing with things on the tray in front of her. These are built to order and are quite big (we had limited use from it, as in the 8 weeks it took to arrive, Ollie had advanced further than anyone was expecting)

          Hope this is useful,

          Chris


          --- In achondroplasiauk@..., "happyhouseachon" <hahn1@...> wrote:
          >
          > Hi everyone,
          >
          > I've just signed up to the Achon UK site last week. Great this network exists so don't feel so alone. Medical advice from specialists seems to be easier to obtain than the emotional support from others experiencing the same condition.
          >
          > We have a beautiful little boy (3.5 months old) who was diagnosed pre-natally with the condition. Slowly coming to terms with it and can start to reach out to others now.
          >
          > Would very much appreciate any suggestions on:
          > 1) baby seat (rocker) that provides good level of back support - I've spotted a number of other babies using them in the lovely photos
          > 2) buggies that provide adequate back support
          > Guidelines from specialists are very useful but they don't seem to go as far as making recommedations on equipment !
          >
          > Kind regards
          > Rachel
          >
        • Kim Chai
          Hi everyone I have a 17 years old son who needs operation on his spine. He is always active in building his body and will never miss going on any outings. Is
          Message 4 of 6 , Feb 15, 2012
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            Hi everyone

            I have a 17 years old son who needs operation on his spine. He is always active in building his body and will never miss going on any outings. Is there any teenagers with achondroplasia to support in going through any problems they may have? If so please encourage each other, we are talking about strengthen them to grow positively. 

            Leon has a facebook but email him at leon.chai@... to talk to each other if you are in that age group.


            Most appreciated and Thank you.
             
            Kim Chai


            From: Chris <chrisbrenchley@...>
            To: achondroplasiauk@...
            Sent: Wednesday, 15 February 2012, 8:34
            Subject: [achondroplasiauk] Re: Baby equipment

             
            Hi Rachel,

            Congratualtions on the birth of your son ands welcome to the forums! Our Daughter Olivia is now 14 months old, and the forums here have been really useful to us.
            You'll find everyone on here really helpful, and if you look over the last few posts there have been some really good links to leaflets and information resources.

            If you are looking for more chat and support online, you could look at the facebook forums for

            LPUK http://www.lpukonline.org/ a fledging group and wildly enthusiastic and sociable!

            DSA https://www.facebook.com/DSAUK The Dwarf Sports Association - hold an annual sports event which is very popular and has events for children of all ages.

            and RGA http://www.facebook.com/groups/4625869799/ long established and with lots of experience and information

            Regarding equipment, you won't currently find anything that is specifically approved for achondroplasia as far as I'm aware, but the same general principles apply - that is to lie flat when possible, and to make sure your son's head and neck are supported. The hypotionia (weak muscles) and proportionally larger head will mean that he might find head control harder and more tiring than other children of a similar age.

            When Ollie was little, we used a Mamas and Papas Starlite swing. Although it's a bit pricey, we found it worked really well. It has good, solid back support, reclines well, and Ollie really liked the light show!
            http://www.mamasandpapas.com/product-starlite-swing-once-upon-a-time/470516000/type-i/
            Bouncy baby rockers are generally thought not to give enough support, but you quite often see them used with a magazine tucked down the back to provide a bit more rigidity.

            We already had a Britax Vigour travel system (Ollie has a big brother) which worked well for us - there was a pram attatchment which we used a lot until she was about 9 months old (and started wriggling too much to use it),and a car seat that clips onto the frame (although this isn't ideal for her back, she isn't usually in it for very long). It is recommended that you keep your son in a backward facing seat for as long as possible.
            If you are looking for a specific car seat, there are "lie flat" seats available, and in the south of england the best stockinst is apparently http://www.incarsafetycentre.co.uk/ in Milton Keynes.
            (I beleive there is a similar centre near Leeds, but I don' t have any contact details).

            As Ollie got older, and more confident sitting, we started using her brother's high chair http://www.svan.com/svan-high-chair.php It was already highly adjustable, but because of her size it needed extra hip padding, extra cushioning behind her, and extra padding on the footplate which I made from a carrymat(The Physiotherapist and Paediatrician both winced at the idea until they saw it).

            Through our OT we ordered a Jenx Bee chair http://www.jenx.com/products/seating/bee as this provides lots of back support - the idea being that if she didn't have to worry about back stability she could better improve her hand/eye motor skills through playing with things on the tray in front of her. These are built to order and are quite big (we had limited use from it, as in the 8 weeks it took to arrive, Ollie had advanced further than anyone was expecting)

            Hope this is useful,

            Chris

            --- In achondroplasiauk@..., "happyhouseachon" <hahn1@...> wrote:
            >
            > Hi everyone,
            >
            > I've just signed up to the Achon UK site last week. Great this network exists so don't feel so alone. Medical advice from specialists seems to be easier to obtain than the emotional support from others experiencing the same condition.
            >
            > We have a beautiful little boy (3.5 months old) who was diagnosed pre-natally with the condition. Slowly coming to terms with it and can start to reach out to others now.
            >
            > Would very much appreciate any suggestions on:
            > 1) baby seat (rocker) that provides good level of back support - I've spotted a number of other babies using them in the lovely photos
            > 2) buggies that provide adequate back support
            > Guidelines from specialists are very useful but they don't seem to go as far as making recommedations on equipment !
            >
            > Kind regards
            > Rachel
            >



          • nettieandco
            Hi Rachel, Welcome to the group. I m a mum of three children and Monty s diagnosis of achon came as a complete surprise when first mentioned at a baby check
            Message 5 of 6 , Feb 15, 2012
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              Hi Rachel,

              Welcome to the group. I'm a mum of three children and Monty's diagnosis of achon came as a complete surprise when first mentioned at a baby check when he was 14 weeks old. He is now 15 months of age and a complete ray of sunshine.

              We have been using a Tumble Forms2 Feeder Seat (Company add: Sammons Preston Bolingbrook IL) since he was 4-5 months old. It's been great and I use it every mealtime. The physio dept at our local hospital provided the seat. Monty has only just begun to sit unaided and to date has not been able to use a highchair. We have just been to see the occupational therapists to upgrade to a seat with tray table attached.


              We already had a Graco travel system in terms of a pram. This reclines fully and gives good support is quite well padded and Chicco baby chair which is well padded and reclines but does not rock (Monty is pictured in the latter alongside his big brother Edward on the achon site). I don't get online much to research in depth but there are plenty in the group who can provide you with the benefit of their research.

              Very best wishes
              Nettie
              from sunny Cornwall.
              --- In achondroplasiauk@..., "happyhouseachon" <hahn1@...> wrote:
              >
              > Hi everyone,
              >
              > I've just signed up to the Achon UK site last week. Great this network exists so don't feel so alone. Medical advice from specialists seems to be easier to obtain than the emotional support from others experiencing the same condition.
              >
              > We have a beautiful little boy (3.5 months old) who was diagnosed pre-natally with the condition. Slowly coming to terms with it and can start to reach out to others now.
              >
              > Would very much appreciate any suggestions on:
              > 1) baby seat (rocker) that provides good level of back support - I've spotted a number of other babies using them in the lovely photos
              > 2) buggies that provide adequate back support
              > Guidelines from specialists are very useful but they don't seem to go as far as making recommedations on equipment !
              >
              > Kind regards
              > Rachel
              >
            • happyhouseachon
              Hi, Thank you to everyone for the kind tips and advice re. equipment much appreciated and v. helpful. Josh has very bad cold at the moment... Best wishes,
              Message 6 of 6 , Feb 29, 2012
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                Hi,

                Thank you to everyone for the kind tips and advice re. equipment much appreciated and v. helpful.

                Josh has very bad cold at the moment...

                Best wishes,
                Rachel


                --- In achondroplasiauk@..., "nettieandco" <nettieandco@...> wrote:
                >
                >
                > Hi Rachel,
                >
                > Welcome to the group. I'm a mum of three children and Monty's diagnosis of achon came as a complete surprise when first mentioned at a baby check when he was 14 weeks old. He is now 15 months of age and a complete ray of sunshine.
                >
                > We have been using a Tumble Forms2 Feeder Seat (Company add: Sammons Preston Bolingbrook IL) since he was 4-5 months old. It's been great and I use it every mealtime. The physio dept at our local hospital provided the seat. Monty has only just begun to sit unaided and to date has not been able to use a highchair. We have just been to see the occupational therapists to upgrade to a seat with tray table attached.
                >
                >
                > We already had a Graco travel system in terms of a pram. This reclines fully and gives good support is quite well padded and Chicco baby chair which is well padded and reclines but does not rock (Monty is pictured in the latter alongside his big brother Edward on the achon site). I don't get online much to research in depth but there are plenty in the group who can provide you with the benefit of their research.
                >
                > Very best wishes
                > Nettie
                > from sunny Cornwall.
                > --- In achondroplasiauk@..., "happyhouseachon" <hahn1@> wrote:
                > >
                > > Hi everyone,
                > >
                > > I've just signed up to the Achon UK site last week. Great this network exists so don't feel so alone. Medical advice from specialists seems to be easier to obtain than the emotional support from others experiencing the same condition.
                > >
                > > We have a beautiful little boy (3.5 months old) who was diagnosed pre-natally with the condition. Slowly coming to terms with it and can start to reach out to others now.
                > >
                > > Would very much appreciate any suggestions on:
                > > 1) baby seat (rocker) that provides good level of back support - I've spotted a number of other babies using them in the lovely photos
                > > 2) buggies that provide adequate back support
                > > Guidelines from specialists are very useful but they don't seem to go as far as making recommedations on equipment !
                > >
                > > Kind regards
                > > Rachel
                > >
                >
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