Lillie is one of a twin. I noticed when she was born that her pupils sat under her bottom eyelids. For about 7/9 months it was very hard with constant Dr visits. She wouldn't focus and just wasn't hitting her milestones, she didn't sleep, didn't take milk too well, and was projectile vomiting. Then we found out she has ford and aspirates thin liquids. She has an array of allergies. One day before her 1st birthday, we went to see an eye Dr, she was diagnosed with bilateral iris and retina coloboma.
It means Lillie has no depth perception, reduced and limited vision and has photophobia. And is also I think long sighted too. About a year later she was having constant glue ear, hearing loss, and continuos tonsillitis, so at 18 months Lillie needed an operation to remove her tonsils and trim back the adenoids as they couldn't remove them due to something called bifid uvular (cleft palate at the back of the throat ) and gromits inserted. She's also had a lump removed from her sternum. Lillie is quite behind educationally even though we have had portage involved from a young age. And now attends a special needs school.
Lillie just recently had another operation for partial cut back of the adenoids and gromits inserted and will need this doing for life as full removal will cause asperations from the nose. We are currently diagnosed as a Swan ( SYNDROME WITHOUT A NAME ) we are on the DDD study and as no yet nothing has come back. Genetics Drs know there's something wrong and are awaiting appointments to see many Drs again to try and get some answers.
Lillie hates change of routine and freaks out in public so we are awaiting an appointment for autism testing too. Lillie sadly also has a condition called trigertilliamania. She has a very floppy bowel we have to thicken Lillies drinks as she aspirates and many other underlying issues. But with all that goes on she's a trooper and carries on the only way she knows how xxx