When we last blogged about her, she was recovering from her successful surgery for Ptosis, the drooping of her eyelids. She recovered beautifully and the little scars are nearly nonexistant. One eye is clearly more open than the oher, hopefully that will be corrected over time.
She has been diagnosed with further eye issues. She has BPES Syndrome, with each of the letters describing a separate eye condition. The "B" refers to the opening of her eyes, which is about 50% of normal. It can be corrected by surgery, at a later date. The "P" is for the ptosis, for which she'll have several surgeries to correct. The "E" relates to a fold of tissue on the inside corner of both eyes, which will be corrected by surgery. They have undergone genetic testing to further define which type she has, type I or type II, but the condition is so rare and the data is so sparse that no more information could be discovered at this time.
Last week, during a routine follow-up by her ophthalmologist, it was discovered that Maddie is extremely farsighted. She will be fitted ASAP for eyeglasses. At this point both eyes are measuring the same but it is really important to begin the correction ASAP so that her brain will not make one eye more dominant. She will most likely have several new prescriptions through out this year, both as she continues to grow and also hopefully as vision can be corrected. So again - time is of the essence.
Jeremy and Renee were quite surprised at this outcome, as they feel she can see. She certainly recognizes them and notices when they are not present. She can transfer toys from one hand to another, grab her toes (she can suck on her big toe - OH! to be so flexible!), and other things that we would think require a certain level of sight.
Maddie is a very happy, giggly little baby girl. She's now sporting two new bottom teeth, can sit up in her stroller, rolls from tummy to back and other "normal" developmental things for five months.
So once again, this precious little family would appreciate your prayers for Maddie's eyes and her vision.
She is so sweet! Thanks for updating!!
ReplyDeleteOh my goodness. She is so darned cute!
ReplyDeleteI am very happy that she is OK. My baby Emitis has the same problem (BPES). Thanks God she does not have any other problem and every thing is according to her age which is 10 months now. She had a surgery when she was 3 months old. Her sight is OK neither far or nearsighted. It is very important to make her eyes work more by showing different things with different colors from different distances to her. Now I just worry about the best plastic surgery for her in the future to have the eyes as normal as possible in appearance and also about the type of BPES. I have heard that one type is very problematic for her fertility ability. I would be grateful if you could inform me about these matters whenever you find good information and doctors. We can share information. I will go to Australia in 2013 to live. My email address is: shirazimanesh@yahoo.com
ReplyDeleteMojdeh
I also have BPES. Are you a member of the FaceBook support groups?
ReplyDelete