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  1. #11
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    No don't have any more info her blood tests results should be in at peadiatrican office late next week sometime.

    He doesn't think it is this but we have muscular dystrophy in our family so I am stressing only because there could be a tiny chance it's in the family so... Could be possible.

    All we know is it is not her Nerves.
    Her reflexes are fine but when he tested one of her legs reflexes the other leg came up at the same time & he said that was not meant to happen in someone her age don't know if that means anything.

  2. #12
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    It must be so worrying for you. I cannot imagine. I do know what it feels like for life revolve around drs and Allied health people. I hope you have lots support around you. Feel free to chat/vent with me if you want. xo


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  3. #13
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    Quote Originally Posted by Cool Cookies View Post
    My DD will be seeing a Physio, speech, dietician & Occupational T & developemental peadiatrican aswell as a normal peadiatrican.

    Has anyone used a councillor for themselves to help them talk and cope a bit more?

    I have got a feeling that when we went for a scan about 35 weeks the scan tech said that DD stomach was small but not small enough to worry about it & now I am starting to wonder if thats her problem. Even after heaps of meals thru out the day it's always skinny & doesn't look she has eaten at all. I am hoping to get her results from her ultrasound from the OB, but I am worried being 15/16 months ago or longer that I was pregnant with her I will have trouble getting the results.

    When I was pregnant with her she was under the 3rd percentile & now @ 14 months old I think she is under 5th percentile for her age
    I haven't been to a counsellor but I know that DH and I have needed one on and off through this process. I have found it all so stressful as I work in health and so know a bit too much but not enough in some things. My DH doesn't have any health knowledge so the medical side of things is kinda my responsibility. All the appointments and coordinating everything has really gotten to me at times along with the fear of not knowing what was happening.
    If you do want to see someone you can go you your gp and ask for a mental health care plan and that will give you some subsidised psychology appts. I have been meaning to do that for ages but have been so busy looking after dd it's not happened yet.

    About her stomach, perhaps ask the paed if he will order an ultrasound of her stomach now. My dd has had 2 and it really relieved me knowing that her liver kidneys stomach bladder were all normal.

    Failure to thrive has also been an issue for us but I've come to terms with the fact that she was born on 3rd percentile and she will stay there. She will just be small. I am also mindful that I don't want to set up bad eating habits that will have long lasting effects. Some people with dds condition end up obese as they are destined to be small but have been encouraged to eat more to grow... I've given up adding cream and butter to everything like the dietician suggested and she is growing steadily at her projectile so I'm happy.

  4. #14
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    Thank you all I do feel a little bit better being able to talk to someone that can relate to things.

    It's been a nervous few days wait & still have a few more days to wait. It's killing me not knowing what is going on with DD. She is such a happy baby on the outside but something is going on in the inside & I want to know what it is.

    I have noticed her weight & muscles etc now that we have been told, but before I wouldn't believe it but now I've come to terms with it. She is the way she is & we will love not matter what, DP has had to tell me that a couple times for me to keep saying it to myself. I feel silly acting the way I am with out her results from blood tests yet, but she still not well what ever it is.

    It's hard because DP is FIFO & he can't be here to support me or DD so I feel I am doing it on my own

  5. #15
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    Cool cookies. . That must be incredibly hard. My dh works long hours and is sometimes away and I find that hard I can't imagine how it is with fifo.
    Dealing with all the heath issues can be very exhausting. Can you get some extra help at home?
    I write a blog about my daughter. .. if you want to read. Www.iheartbabylove.wordpress.com
    There's some posts in there about dealing with her diagnosis.
    Hugs.

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  6. #16
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    Thank you tamtam.

    We are getting married in Feb 2014 & one of the things I wish for is for DD to walk down the isle with her brother. So knowing that is a milestone to work for helps a lot to & even if she can't walk down the isle, it will be painful but just having her healthy will be enough.

    Will read your Blog Tamtam thanks

  7. #17
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    Quote Originally Posted by Cool Cookies View Post
    Thank you tamtam.

    We are getting married in Feb 2014 & one of the things I wish for is for DD to walk down the isle with her brother. So knowing that is a milestone to work for helps a lot to & even if she can't walk down the isle, it will be painful but just having her healthy will be enough.

    Will read your Blog Tamtam thanks
    Lovely. I'm keeping everything crossed you'll get your wedding wish!!

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  8. #18
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    Tamtam I had a look at your blog. What a good idea - I imagine its good to put the words there and out of your head. Sometimes I really feel like I need some kind of outlet for all the thoughts in my head.

    Cool cookies I really hope that you get some answers. The waiting was very difficult I found. I really hope that you can keep yourself busy to distract yourself.

    Look after yourself too - it's so important but very challenging most of the time. I seem to have a mini breakdown of sorts every 3 months or so that reminds me to consider my own needs too. I really know now that a healthy mum makes for a happier child. Tricky though...

  9. #19
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    Quote Originally Posted by Cool Cookies View Post
    Thank you tamtam.

    We are getting married in Feb 2014 & one of the things I wish for is for DD to walk down the isle with her brother. So knowing that is a milestone to work for helps a lot to & even if she can't walk down the isle, it will be painful but just having her healthy will be enough.

    Will read your Blog Tamtam thanks
    So exciting that you have a wedding to look forward to. I really hope as well that you get what you are wishing for x

  10. #20
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    Quote Originally Posted by CookingMonster View Post
    Tamtam I had a look at your blog. What a good idea - I imagine its good to put the words there and out of your head. Sometimes I really feel like I need some kind of outlet for all the thoughts in my head.

    Cool cookies I really hope that you get some answers. The waiting was very difficult I found. I really hope that you can keep yourself busy to distract yourself.

    Look after yourself too - it's so important but very challenging most of the time. I seem to have a mini breakdown of sorts every 3 months or so that reminds me to consider my own needs too. I really know now that a healthy mum makes for a happier child. Tricky though...
    Thanks. I mostly used it to just update people on dds progress... Turn sometimes I use it to ramble!!

    I do the meltdown thing. But mines like every 4-6 weeks. ..then I pull myself together and carry on. That's just what is mums do.

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  11. The Following 2 Users Say Thank You to Tamtam For This Useful Post:

    CookingMonster  (13-10-2013),Sookie Stackedhouse  (11-09-2014)


 

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