I've really got my fingers crossed for you hon that all turns out ok with the scan. I presume she can move her legs etc? If so then that's a really good sign.
Was it picked up before birth? Daisy wasn't so it was a bit of a shock.
Try to stay positive - We were told with Daisy that she wouldn't walk (she does), would be developmentally delayed (she's apparently about a year ahead) and would need a shunt for hydrocephalus (she doesn't). The only thing we've got issues with is her bladder and bowel issues and I wouldn't be surprised if she went on to defy that in some way. It's great news that her bladder and kidneys are ok, have they done a DMSA scan yet to check function or is she too little? It's one thing they're always cautious with as kids with SB can have more kidney issues than most - the fact they're 'normal' now is really promising. x
Hey. Yes she can move her legs perfectly - infact she's a strong little madam! Her neuro-surg is pretty much convinced that the nerves to her legs are not involved at all, and she's also escaped hydro. Funnily enough, although she's only 9 weeks tomorrow, the HV has already said she's ahead with her social skills (smiling, cooing etc). She hasn't had a DMSA scan yet - I think her neuro-surg wants to do the MRI first to see if any nerves are involved, and she has an appointment at Manchester's SB clinic in November, where we'll meet the urologist/kidney specialist as well.
Freya's was picked up on the 20 week scan. We were originally told "brain damaged, paralysed, need to terminate etc etc, but 2 days later we had a more detailed scan at St Mary's with her neuro-surg, who said all that was rubbish, and that she was actually not as bad as they said. It must have been awful for you, not knowing - I really feel for you. Daisy is beautiful by the way - a proper little cutie! x
