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  1. #51
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    Default Welcome!

    Hi Penny,

    Yep, this is where we hang out, as Nic said, we're on intermittently but speaking for myself I usually manage to get my eye on this forum at least every day and say hello if I can.

    We don't have a Mito disorder but as Nic said - PM or post any time if you need to talk.

  2. #52
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    Hi guys I'm bel married 30 with 2 kids sienna may 07 and Jarvis may 08. Sienna has recently been diagnosed with PDD-NOS she now goes to pre school 1 day a week and speech therapy 1 day a week in the last month of starting speech she has come along way, she said her very first sentence this week "pup sit down" to some at 2.5 years this is nothing to us we were very proud.

  3. #53
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    Hi I'm Beck, i'm a single mum of 3 girls Maddi 5 my eldest has no health issues, tho Tayla 2 has mild asthma, excema or dairy intolerance and has recently started having absence seizures the first was the most scariest day of my life as not only did she zone out but had no control on any muscles in her body and then there is Lucy 1 she has Raynauds disease and her blood work came back with signs of lupus, she also has an atrial septal defect...... Although it sounds like alot so far things have been not so scary asides from Tay's seizure wednesday

  4. #54
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    Hi. I am a long time member, but am completely new to ths section. I have 3 little people in my life - Zack4, Leigh 3 and Evie who is 10 months old and was diagnosed wih Leukaemia(infant ALL) nearly a month ago.
    Since then our world has been turned upside down as we all come to terms with it. I am in hospital with her atm, breastfeeding around the clock while we wait for her levels to come back up after her first round of chemo.

    I am so glad this section exists! Looking forward to chatting!

  5. #55
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    Hi everyone my name is Leah and I have a 5 month old dd briella who is deaf. Look forward to getting to know you all.

  6. #56
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    Jenbelina that sounds horrible when is her 1 st round of chemotherapy

    Hi lululeah what's the next step with bub being so young?? As in treatment

  7. #57
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    hi everyone,
    ive been on bh for a while now, but i didnt find this group till last week!

    my daughter evelyn is nearly 5 months old and she had goldenhar sydrome.
    at the age of 3 months she had open heart surgery for an avsd and one main av valve.
    her left ear has microtia and artresia, which means she has no ability to hear out of it. and her right ear has a servere conductive hearing loss (she has the cutest pink hearing aid!). as a side effect of her surgery evie has developed epilepsy and is now medicated. her heart suffers from svt (heart rate continuously cycling thro from 110-230) and she is also now medicated for that. evie also has a portwine birth mark over her left eye, which can affect the blood vessels of her eye, but so far doc dont think it has affected her vision.

    goldenhar mainly affect one side of a persons face, evelyn has been very lucky, as the left side of her face is smaller than her right but it hasnt affected her ability to move her month, how ever if the leftside does not grow in porportion as the right she will need to have a jaw extraction. Evelyn also has a moderate case of scholiosis, but the docs cant tell how bad it will get until she is older.

    even tho she has been thro so much already, she is a fantastic little munchkin and my partner and i r wouldnt swap her for the world. we are just very thankful that she isnt mentally delayed. we dont think of her as disabled (i hate that word, it implies she is restricted in her ability) but we just think of her as more high maintance!

  8. #58
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    boysrgr8 is offline living with a constant look of OMG!
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    Hey Jen, I am in the Special Needs thread too. Nice to have you here. Mwah!!

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    Quote Originally Posted by boysrgr8 View Post
    Hey Jen, I am in the Special Needs thread too. Nice to have you here. Mwah!!
    Hey yes, lol i never scrolled down past the state chats! theres a whole new bubhub i have discovered

    i never really posted anywhere except heart mums thread anyways, cause i didnt really feel comfortable cause i found most chats too controversial - home birth or hospital birth, drugs or no drugs etc etc etc, it drives me insane! people who are so certain their way is the best without even doubting their having a healthy chubba bubba, maybe its jealousy i dunno, but gosh some ppl are so naive and have the "oh it wont happen to me". anyways it nice to find a place where i think i might relate to everyone more, and theres even a gardening thread!!!!!! im such a nerd

    hope B-BOY is well, we should catch up after the new yr

    and to everyone else, HI and Merry Christmas

    jen

  10. #60
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    boysrgr8 is offline living with a constant look of OMG!
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    You are so funny Jen. B is doing awesome!! We would love to catch up with you in the New Year. I will FB you.

    I agree with your feelings, it could be jealousy or it could be that we now live in a world where bigger things matter. It sure is a funny world!

    Enjoy your Christmas. There is a sticky that mums post in to update, under the Parents of Children with Special Needs header.

    Much love to you and E!!


 

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