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New diagnosis, so many questions??????
My beautiful 20 month old daughter has just had a MRI brain scan which showed she has PVL and Quadriplegia Cerebral Palsy. Although I expected it to show Cerebral Palsy I was a little shellshocked about the PVL and that her CP was quadriplegic. She has been having physio for 7 months as she cannot sit, stand, rollover and her right side is much weaker than her left side, her digestive system is very slow and suffers from chronic wind and constipation. Now I am writing some of her problems down it seems strange that I was so surprised at her diagnosis but Ziyal is an absolute delight, she is such a bright, happy (and loud) child who's speech is amazingly advanced and I actually forget her medical problems when she is sat in her supportive chair playing with her toys, that is until I stop and think about all the adaptions I have had to make for her to simply play with her toys. I would really appreciate some feedback from parents/carers of children with similar issues because trying to get respite care/understanding professionals/real friends who don't look like their heads will explode when you speak to them, and info on helpfull charities as I am a single parent and cannot return to work now or in the forseeable future. Any advice would be appreciated