It is ridiculous the whole centrelink stuff. We only get carer allowance despite all the medical issues Ash has and costs of therapies we pay out. My husband earns too much to get carer payment even though I am unable to go back to work more than a couple of hours a week and Ash can't go into any child care as he may get sick and it may trigger his epilepsy which is life threatening. Just so frustrating. We got the paed to do our paperwork and got apporved straightaway. We get a helath care card for Ash which is great becuase I would be spending at least $100 a month on his meds otherwise.
MHW- could you get your paed to do the paperwork? you guys should definately get it.
Forevermine- I can't believe that you wouldn't get it as there can be alot involved with CF, lots of tests, hospital stays, special diets, meds and your DD is ng fed partially too (she should be eligible just on those grounds as that is time consuming in itself).
Busy week ahead next week got paed, therapy appts OT, physio (new one) and hearing home visits. Hope everyone has a good weekend.
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28-04-2011 19:49 #61
30-04-2011 09:07 #62
Come join the thread Cerebral Palsy, Epilepsy Advice.
Any mums with muscle tone issues, suspected CP and dx CP should drop in!!
Just trying to get a thread going similar to this where we can just chat about Cerebral Palsy and similar.
Its lovely to talk with all the mums on here, but sometimes I feel I'm burdening mums that don't understand and don't need to understand about the daily dramas of CP
Last edited by kiz; 30-04-2011 at 09:14. Reason: Crazy computer issues!
08-05-2011 09:46 #63
HAPPY MOTHER'S DAY!!!
I hope all the special needs mummies have an extra special mummies day!!!
This is the day set aside just for us mums and you all deserve a day of rest and relaxation
Sent from my i (couldn't live without it) Phone
The Following User Says Thank You to kiz For This Useful Post:
08-05-2011 14:20 #64
Back at ya Kiz, hope you have a great and lazy (well as much as possible) day too. My hubby has to work tonight, seems his work weeks always fall on Mothers day....how convenient, lol. But that's okay, he spoiled me with brekky in bed when he got home from work this morning, and did all the 'kid' things I usually have to do. Was wonderful!
08-05-2011 15:03 #65
Hi guys Its been a loooooong time since i've been on bubhub.
Is it ok if i join in here on your chat?
My name's Peta, i'm mum to almost 5 yr old Alexandra. Alex has been dx with lots of stuff including gdd, hypotonia, oral aversion (which she is rapidly overcomming), sensory processing disorder, umm... physically she has congenital heart disease (repaired), larybgotracheamalacia (repaired), she's currently got a PEG although that is being removed, just waiting on theatre date, she's had her T's and A's out due to OSA, short stature, FTT (although she's now on the charts ), uncoordinated swallow resulting in aspiration, umm...
She's a gorgeous kid, she's doing so damn well medically, but behaviourally she's doing my head in. Snesory issues rule our lives, its become so difficult to go anywhere.
She gag's at mud (or anything similar like cement, jelly etc) , in real life or tv, she is soooo pedantic about the clothes she wears, she absolutly loses it if she hurts herself and i try to console her (extrememly high pain tolerance).
Just over it and wanting some support
Im a single mum. Alex attends kindy 2 days a week and EI at the local special ed unit 2 half days a week.
08-05-2011 17:17 #66
Funny to see you posting the same day as i have come crawling back lol
Hi i am sue, like Peta i was a regular on the old special needs chat. had a big break. but thought i would pop back in.
short run downn. my eldest now 9 was born with unknown hypotonia. it was predominately in his face and torso, so speech, dribbling, and sitting were his issues. he had the physio speech etc etc. Now he is fine...except the low muscle tone in his mouth has distorted his teeth, jaw so is on waiting list for braces and jaw widening which they wont do anyway until all his teeth have come thru
mr 4 was like alex^^ and our little friend miki born with laryngotracheomalacia. his was bad enough to need an op but they left it as his apnea wasnt life threatening and he surprised the ent by being able to eat. getting a bottle into him was a pita though. he also had infant seiazures which he grew out of by 1 (actually both mine had them ds1 stopped at 4yrs old). mr 4s first seizure went for 20mins of being blue at 3 months old and they are not sure if that has led to his intellectual impairment. He attends preprep 2 days a week this yr at special school which he is loving. i am hoping he can go to main ****** school next yr with extra help. talking to his teacher this week about the odds of that happening.
kane is also very sensitive to pain. he will scream for ages if a mozzie bite is annoying him.
thats about it.
look forward to chatting with you all.
ps regards to carers allowance i only just got accepted for that and kane is 4. its a joke. wish they back paid me 4 yrs lol
08-05-2011 17:34 #67
Hey Sue look at us oldies back hahaha. Feel like a vetran in here.
Ive got alex's iep meeting next month where im gonna ask the same thing, is she going main******. The school she's attending has 'main******' and a special prep class, its not actually a full on special ed school. I hope she goes to the main prep class but I sorta doubt it.
Alex is opposite with pain, unless its full obvious i wouldnt know.
EG she broke her collar bone last yr at kindy and i didnt even know till a day later when the bruising/swelling showed
08-05-2011 17:44 #68
aww poor bub regarding collarbone
kanes school is full special needs from prep to yr 12. I am hoping he doesnt need to go there, but if he does i am sure it will be the 2 days there 3 days at main ******. he can talk but at nearly 5 is still only 4 word sentences. he cant remeber nursery ryhmes, knows no colours, no letters, no numbers, scribbles to draw (like a 1-2 yr old) was diagnosed selected muteism but thats getting much better. People dont realise there is anything wrong with Kane as he socialises well, can follow directions etc. Most are shocked that he attends EI and afew have said how do you know he cant do letters, have you checked.And does he really need to go? i am sure he is just taking his time etc etc . ignorant? naive? i dont know.
I certainly dont do it for fun and his paed told us to go after watching kane in action.
Kane used to be very violent to the point i was scared to have ds1s friends over. kane would chase with bats/knives the lot. This has stopped. But ummm how do i put this....kane is overly sexual. He will grind on someones leg, pulls his pants down all the time. is this a common thing with delayed kids? My eldest certainly wasnt like this
09-05-2011 09:11 #69
Hey sue, how old is Kane developmentally? That might have a lot to do with the sexual stuff. I know i was so sick of telling alex to get her hands out (of her nappy, nickers etc) and im so relieved thats finally moslty passed.
I know what ya mean hey, a lady at kindy said she's just like the other kids to me about alex. If only!!
09-05-2011 09:56 #70
Kane has never been given a delayed age. probably because he is all over the place. physically he is a brute lol. i am hoping i get more answers now he is in EI.
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