Tyler has a disease called Retinopathy of Prematurity that only effects children that are born BEFORE 32 weeks. Low Birth weight and gestational age play a HUGE part in this disease. Some are only mildly effected but for us that isn't the case.
Tyler was diagnosed close to his go home date with ROP stage 3 PLUS disease. This advanced stages of retinopathy was "discovered" before retinal detachment so he does have some sight. He is at risk for retinal detachment for the rest of his life.
Eye exams for kids Tyler's age are not pretty. Because he has them often he HATES them. He screams and kicks and freaks out. His eyes are dilated almost every time and we rarely get any real answers. Meaning because of his other delays ( especially in speech) we still do not know what he CAN see and what he can't see. It is basically a educated Medical guess.
Visual impairment is something that we feel is a huge mystery only because we don't know the extent of what he can and can't see. Tyler has nystagmus as well that is from head pressure that has ruined his optic nerve. He also has a coloboma which makes his eyes let in to much light. It can make your vision even worse. ( the picture above shows that his special eye, which is a coloboma)
For those who are interested ( or don't think that we have it "bad" or they have it "worse") or have questions regarding his ROP please email me or let me know so that we can bring back answers for you. His appointment is tomorrow at 1 if you would like to go. Tyler needs to be seen every 4-6 weeks at this doctor so more appointments will be coming. His Doctor is more than happy to have visitors with LOTS of questions.
2 comments:
good luck, eye appointments are no fun!
Sorry, I can't make it up to the appointment because of work and living a 2 hour drive away, and snow on the road AGAIN this morning. But let me know what the doctor says.
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