A few weeks ago we visited Moorfields eye hospital in London about Imogens ptosis and to discuss surgery. They were fab but the consultant we were there to see can’t operate outside of Moorfields and Imogen is too medically complex to be operated on there, we need somewhere with Paediatric Intensive Care Units and the ability to cope if she doesn’t respond well to the anesthetic given her hypotonia. We were lucky though and his colleague, probably the leading world expert in paediatric ptosis surgery was there and able to pop in and see Imogen and has now moved her care to him at Great Ormond Street.
Last week we visited GOSH for the first time. The day started off well with a kind train guard moving us to first-class when she saw us struggling with Imogen and her pram on a very busy train. Imogen felt so at home in first class she noisely vomited in the quiet coach. Oops.
Great Ormond Street seems like a great hospital and we were seen 15 minutes early which is pretty much unheard of!
This visit was to do some more in-depth testing of Imogens sight. They do this by sticking electrodes to her head similar to an EEG, then show her flashing images of different size black and white checks, Finally they flash bright lights in her eyes repeatedly. Luckily she was alert and pretty happy to cooperate with these tests so now we just have to wait to get the results tomorrow, (another trip back to GOSH for us- if anyone knows Richard Branson some train fare discount would be appreciated!)
We are keeping our fingers crossed the tests show some positive results as we really don’t know how much Immy can see. We know she can see things right in front of her, we know her sight is improving but we also know she is miles away from having the sight you would expect for her age, or even half her age! We would love to hear she will catch up one day, but are prepared it might not be that simple.
We also hope we can get the ball rolling on a surgery date to correct her ptosis (weak eye lid muscles). We can’t wait to see more of her beautiful blue eyes.