SarahJayne_x
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- May 10, 2009
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nina - better late than never, sounds like you had a pretty rough time, especially with her having a knot in her cord, sounds very dangerous,must have been hard for you not being able to hold her on certain days, bet your making up for lost time now tho, hope the testing comes back with the results you want, not long now for your meeting, i hope you dont mind me asking, and please tell me if you do but what genetic testing has she had? like i say if you mind just tell me to mind my own
It's neuro genetic testing. My son has an unspecified neuro genetic disorder. He has a severe global developmental delay, hypotonia (low muscle tone), skeletal dysmorphia, hyper pigmentation (is light in all features, drastically lighter then anyone in either family), has a sensory processing disorder, likely somewhere on the autism spectrum, and a has a small handful of genetic abnormalities.
As for my daughter, she had a 2 vessel cord instead of 3 which can be a sign of a possible genetic disorder, her head also measured slightly small, although her brain seems to be fully formed (they did an ultrasound while she was in NICU), and she also has one of those genetic abnormalities that my son does. It's called a dorsal dimple and simply put is just a small indentation in the tissue (a dimple) at the base of the spine. With these and my son's issues they just want to make sure she doesn't also have a neuro genetic disorder because early intervention is the best way for a special needs child to thrive in today's world.
And I really don't mind talking about it. My son might be special needs but he is an otherwise healthy (rarely gets sick), happy and vibrant little boy. Everyone he meets loves him and he just enjoys life to the fullest so I feel that he hasn't lost out on quality of life, what's the point of feeling ashamed of such an amazing little boy? I want people to know what I've been through so that people (in general) can learn to accept that special needs isn't abnormal, it's just not typical. That starts by advocating for my son and educating other people about him.
sounds like hes gone through a lot of tests etc to establish his conditions.. i agree completley with you when you say that special needs isnt abnormal.. my younger brother was tested for autism/adhd/dyspraxia when he was a lot younger (hes 21 next month) and my mum went through so much to try and get a diagnosis for him and she went through a phase of explaining to people why he was like he was but in the end people just understood thats who he is..
hopefully calli wont have the neuro genetic disorder too but lile you said if she does have it then at least they'll find it early and they can do what needs to be done for her then xx