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  1. #11
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    And pls don't blame yourself! You are doing your absolute best to get you and bub through this new world of tests etc.

    Feel free to PM me if you need to. I understand how stressful it can be.

  2. #12
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    Are you linked into any other services, physio or speech (speech paths can help with feeding issues), if so then then they can probably give you some good advice - maybe more so than a paed or GP. My Dd1 has a syndrome and I have found that our physio in particular has been very supportive and has more hands on experience than the drs.

    Best wishes & hope you get some answers soon. Don't beat yourself up with whatifs etc.

  3. #13
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    She on waiting list for speech, occupational, development pead, she has seen the physio twice now but that was before her pead diagnosed her & they were not really good got a appointment again next Friday so now she has been diagnosed we will see how the physio are with her now.

    Just waiting around every day playing with her it's heartbreaking & very tiring. I can't wait until everything starts happening so we can relax a bit more because we will know what to do & how to treat her.

  4. #14
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    What is she like developmentally now? Perhaps if we know where she is at, others might be able to help if their little ones have been given exercises etc.??

  5. #15
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    Crawling , pulls herself up on furniture & walks along it couple steps but I have not seen her do it for couple days now. Only babbling no talking no words, can not point to something. Hope that's what you mean by development

  6. #16
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    Quote Originally Posted by Cool Cookies View Post
    Crawling , pulls herself up on furniture & walks along it couple steps but I have not seen her do it for couple days now. Only babbling no talking no words, can not point to something. Hope that's what you mean by development
    I have also noticed that she has a short attention span & gets frustrated very easy & quickly

  7. #17
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    Quote Originally Posted by Cool Cookies View Post
    Crawling , pulls herself up on furniture & walks along it couple steps but I have not seen her do it for couple days now. Only babbling no talking no words, can not point to something. Hope that's what you mean by development
    It sounds pretty great at 14 months. ..especially with the other issues going on.
    I know lots of kids who had FTT and hypotonia as part of their diagnosis (through my support group) who have no n limitations on their life. They may have walked out crawled slightly later..or had issues with swallowing or constipation (due to low muscle tone) but are older and doing really well.

    Do not beat yourself up. .. you are doing everything you can!! Getting help and support can be exhausting and frustrating. .. and very isolating. It's like a constant fight to get people to listen. You are doing all that you can and you are loving your daughter and advocating for her. It's hard work but things will come together.

    Sent from my GT-I9505 using The Bub Hub mobile app

  8. #18
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    I agree with Tamtam and your DD sounds very similar to mine developmentally (who doesn't have hypertonia or failure to thrive). She's 17 months and can walk but chooses to crawl mainly. She bum shuffled from 12 to 16 months and then walked/bum shuffled for a week and now crawls.

  9. #19
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    Oh and I wouldn't worry about the talking. She sounds on par with most bubs


 

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