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hi i've never wrote on any forums before but thought why not. My son is 6 he was diagnosed with porencephaly ,epilepsy and quadriplegic cp at 6 months old. Even though he has many problems he is my precious boy.When the doctors and dietians are constantly trying to change things it cracks me up they never seem to believe me the 1 person who knows him inside out 100 times over that he is soooooo happy.
x

Replies

  • Hi! I work with kids who have cp but I dont know that its like to be a mum of a kid with it. What I do know is that your job as a mum is challenging and you must ot a great job! I think one of the hardest things to deal with is the epilepsy (well for me at work). Some of my kids are tube fed, some have a liquidised diet and some can eat solids. I know its hard working with professionals especially when you are the one who knows your boy! Theres one boy in my class who we have difficulty feeding and he sometimes aspirates but his mum never has problems feeding him! She knows how to do it coz she knows her boy best but he doesnt really eat the same for anyone else so that means we need loads of rules for his eating routine!!! Mums know best!

    Hugs xxx
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