Hi all!  I apologize for the lack of posts–Dakin was sick over New Year’s and we have been reeling from that–in addition to all the regular SMARD stuff.  So I am sorry, and I promise I will do better!

Which brings me to my points: 1.  I am hoping other SMARD parents will want to contribute to this blog.  If you are interested, let me know and I can add you as an admin and you can post whenever you like.  2.  I thought it might be fun to share adaptive ideas with one another, so if you have an idea that works for your little one, write me up a post with some pics and I will post it.  I will be posting an example with Dakin’s marionette strings tomorrow!

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  1. if any one that comes across this site and wants to ask me anything about maddison and our experaiances with SMARD1 then please feel free to email me lidias1@virginmedia.com.
    this site is brillent,its the place to hear the real lifes and storys of our SMARD1 really is,yes sometimes it is really sad but i think its all the sadness and horableness you get to hear when you google SMARD1.
    And yes it is as important to know how serious SMARD1 is,but also i think its very important how well a child with SMARD1 can do to,as when it comes to a parent haveing to choose weather or not to trach and vent thier child,that by reading some of these storys they might not be so scared to give thier child a chance of liveing a good as posable quilty of life.

    just for a cacth up on my maddison……. 10.2.11
    Maddison is doing brillent,shes a really happy little 2 year old girl.
    she is such a bright child and loves to learn,and will be starting mainstream nursary in september.
    maddison is still on 24/7 ventilation,but have started takeing her off for a small time dueing the day(shes done 15 mins so far)
    she is eating and drinking realy well,she will eat almost anything.we dont use the G tube much at all any more.
    maddison can now sit inderpendatly,roll around the floor,maddison own style of crawling(it gets her from A to B)we have had to order 6 meter of tubeing.
    Her comunication is great,she can say anything and everything,and knos exacly what she wants(evern when she needs suction,so cute)
    maddison still has cough assist 3 times a day,and so far seems to have done the trick as she as keept healty and well for over a year,she as had a few colds but she as coped brillent and not needed any oxygen or hospitalization.
    so all in all she doing really really well and we cant wait for the summer to get her out doing lots of fun things.xxxx

  2. 2.3.11
    maddison is now doing 30 mins off her ventilater and copeing really well,were not aloud to go over 30 mins intill she is reviewed by her doctor.
    we have come across a problem,wicth is nothing we can do about it,and that is shes growing and fast,lol,because she is growing quick she as a massive leak from her trach wicth makes the vent alarn all night.not just low peep but open cuircuit(its that big)
    but a bigger problem is because she as grown so fast her muscul strenth is a bit behind again now,so weve got to now go back and do some of the physio we started with ages ago.i surpose its always going to be like this intill she stops growing.

  3. 2.3.11
    maddison is now doing 30 mins off her ventilater and copeing really well,were not aloud to go over 30 mins intill she is reviewed by her doctor.
    we have come across a problem,wicth is nothing we can do about it,and that is shes growing and fast,lol,because she is growing quick she as a massive leak from her trach wicth makes the vent alarn all night.not just low peep but open cuircuit(its that big)
    but a bigger problem is because she as grown so fast her muscul strenth is a bit behind again now,so weve got to now go back and do some of the physio we started with ages ago.i surpose its always going to be like this intill she stops growing.
    so now she is on 23.5/7 ventilation.:)

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