I haven't posted for a very long time, but to cut a very long story short, my nearly 10-month-old DD was diagnosed with ventriculomegaly (too much fluid in her brain) when I was 28wks pregnant.
We don't yet know what caused this, or what her prognosis is, but having spent her first 4 weeks in the SCBU being tube-fed, she is now a healthy, happy little girl who now eats well but has hypotonia (ie, she's a bit floppier than you'd expect) and just happens to be a little behind her peers, in most areas.
We have 11 health professionals involved with her care which means I've been plunged into special needs land with many appts, tests, etc, and which also means I never get much time on the computer. But I wanted to say hello and make contact again with the special needs crew. Especially if anyone else out there has a baby or child with neurological symptoms and a similar lack of diagnosis. They suspect it may be a small deletion along a chromosone somewhere, but no diagnosis seems to come to mind with the geneticist/neurologist as yet. Hence MRI scans and some interesting new chromosone test.
Anyway have rabbited on long enough! Looking forward to meeting old friends and making new ones, love Arabica and Esja xxx
Here are some suggested organisations that offer expert advice on special needs.
SN children
Developmental delay--what it means for us (long)
Arabica · 16/05/2007 12:19
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