#1
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I just wanted to see if there was anyone else who feels like they are banging their head against a brick wall!

My daughter was stillborn but after 25 minutes she took a breath and so her battle began. HIE grade 3 was diagnosed with moderate hearing loss in both ears. She was fitted with aids at three months. I always expected cerebral palsy to be diagnosed, you don't have a start to life like that and walk away unscathed. She has low muscle tone in all four limbs and trunk and this affects her ability to swallow. She is now mostly tube fed as refuses food and drink because I think she is scared of the sensation.

She won't wear her aids and pulls them out and pulls them to bits, even when they have been superglued. She is now 22 months and can say a few words but mostly tries to sign. My view is that there is more than just hearing loss causing the lack of speech, she only speaks when she summons the coordination to. For instance when she doesn't want food, she said 'no go away'. She doesn't have a two way chat. The teacher for the deaf and audiology make me feel like a bad mum because I don't make her wear her hearing aids. She gets so upset and then they get pulled straight out. Audiology can't get near her to take impressions for moulds or do the regular hearing tests. They only understand the hearing loss and not the whole child and what other problems she has.

Just wanted to know if anyone else felt the same and how do they cope.


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