Ever since she was born she has been floppy. And after many months of telling HV and GP's that she is not feeding properly and is not showing any signs of sitting crawling etc. They decided to refer her on to the paediatrician. Where he found that she had clicky hips, she had hypotonia (low muscle tone) and extremely hypermobile (bendy). And she is globally developmentally delayed.
So she is now under Orthopaedics with her hips as when they did the xrays and ultrasounds she has very shallow sockets which she has recently had them checked and they are getting better. And she is also under the neurologist who has put her for loads of tests, so far she has had blood tests, an EMG, nerve conduction studies and an MRI. Now depending on those results there will probably be more tests. She also goes to the eye unit for regular checks as they say she is long sighted which is normal but because of her muscle tone etc they want her to have regular eye checks. She goes to physio and occupational therapist aswell, which have helped alot. As since she started she has sat up and she pulls herself up. She has a special chair so she can sit and have the support she needs. Piedro boots to support her ankles and she has a Kaye walker to
her walk. She can take a couple of steps unaided now.
She is a very happy little girl and is very determined. She does get very tired very easily and when she is very she can't even sit up she just lies there not being able to move. She has surprised all the professionals she is under with her determination.
So now we are playing the
game to see what these tests will show and see if we will get a diagnosis. And it's this that is the difficult bit as at the moment we take each day as it comes. All we know is that she is improving but we don't know whats going to happen in the long term.