The Vision Specialist called today and wanted to get some more info about the girls. She asked me to write their history so that we could go into our meeting prepared. After I typed it up I thought it was interesting so here is what I've got, so far. All I can say is, "Wow". What my girls have gone through so far. Mainly Tori, but who knows what is going to happen in the future.
Tori had her first eye appointment at 3 years old. We went to an ophthalmologist that was unfamiliar with Sticklers Syndrome and when he gave her a prescription for her glasses he was very concerned and wondered if I had had any complications with my pregnancy (which the answer is no!). We then saw Dr. Wing who has worked with my husband's family before. He diagnosed her with Sticklers Syndrome when she was 4 years old. Her prescription at her first appointment was -6.25 in both eyes. Her eyes change every time she has any type of growth. Right now her prescription is -6.75 in the right and -8.75 in the left.
February (?) of last year she had her first retinal surgery. She came to me and said that when she blinked there was something that was in the way. We got her in immediately to her ophthalmologist at Primary Children's Hospital and Dr. Dries advised us that she had a tear in her retina and we would need to have surgery immediately. We then went over to the Moran Eye Center where she met Dr. Bernstein who perfomed the retinal surgery that evening. They performed Cryopexy (freezing of the tear) in her left eye and fixed a Scleral Buckle to help to hold her retina in place as it healed. They also checked her right eye while she was under anesthesia which proved to be starting with some small holes in that retina. They were able to Laser the small holes closed.
November of last year she said she was having problems seeing again, so we took her to the emergency room at Primary Children's Hospital. The on call resident ophthalmologist came in and found some small tears beginning and advised us to keep Tori down until the following Monday when Dr. Bernstein could see her again. She then underwent a full Vitrectomy, where they drain the Vitreous and reseal the tear. They inject a gas bubble in the eye to keep the retina in place as the eye fills up with fluid.
Because of the Vitrectomy she has developed a Cataract. March 26th she will be undergoing Cataract Surgery. As well as another partial Vitrectomy, she has a small amount of Vitreous still in her eye and blood clots which are obstructing her vision.
Samantha was taken to Dr. Dries at Primary Children's Hospital when she was 18 months old. She was diagnosed with Sticklers Syndrome that first visit. Her prescription was -8.75 and has changed as she has grown. At one point her prescription was -10.25 but at the moment she is -8.75 and -9.75. She is undergoing patching in her right eye everyday since her left has always been stronger then her right. It seems to be showing improvement. So far Samantha has not had any Retinal detachments but my husband and I are on constant look out for the first signs of any trauma.
Samantha is constantly covered in bruises on her knees because she falls a lot. She runs into things that are not in within the vision of her glasses. I asked her one day why she has so many bruises on her knees and shins and she said, "Mommy, sometimes I fall down a lot."
Well that's what I have so far for the girls "History". Breaks my heart sometimes but the girls are awesome and resiliant.
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