Spent the morning in hospital this morning with Ser,having her eyes checked and (so i thought) being fitted for her glasses.
Well she had all her checks done and those nasty stingy drops put in her eyes and then went to see the big cheese consultant.She was lovely it has to be said and apologised that it wasnt better news....apparently Seri has a problem with the shape of her eyes and also the development at the back of the left eye.She HAS lost some of her left field of vision (as we had been told previoulsy) and her sight isnt brilliant..she explained it like this (showing me one of those eye test charts you normally see in thenopticians with the letters on) Seri's sight is like she can read only the top two lines on the chart.
HOWEVER,she is also showing signs that suggest that neurologically she hasnt the potential for better eye sight because of damamge sustained to the visual centre of the brain,in which case glasses would do nothing.So she is sending her to Birmingham Childrens hospital (was going to be Moorfields in London but she said Birmingham have started doing the same test) for electrodiagnostic testing which will basically look at the brains visual response and see what state its in.When we get those results ,which will be about 2-3 months,then she said we will have a better idea.she said that if she's proved wrong and she does have potential for better vision then they will '' pull the stops out'' and see what surgical options there are and what can be done with glasses.
came out feeling a bit crushed to be honest,always seems to be bad news. Arrived home to find a big envelope from the EPICURE study Seri was registered on...they are researching outcomes of extremely premature babies born in 2006.Seri's 'lovely'(in the same way a severe gastric bug is lovely) neonatologist was taking part on the study team.They sent a huge questionaire to fill in with such things like ticking all the different words she could say....hmmm that wouldnt take long and how well she's walking etc etc and then were 'inviting' her for a full medical and assessment which would be videoed...................................needless to say I phoned them up and very politely declined this amazing opportunity (Im sure you can detect the sarcasm lol!)
well tomorrow is my princess's birthday and we are in Sheffield Childrens hospital all day for the latest on Seri and also Samuels biopsy results.Lets hope theres SOME good news tomorrow!!!