For all you wondering...

I have entered the world of blogging out of pure necessity. I am trying to find a way to update all of our loved ones without spending my entire day in explanation on the phone. So here it goes.

When Jayden was about 3 years old we found out that he had a condition called bi-lateral ambliopia. This means that his vision signals coming to his brain are weak and the brain can ignore his eyes. He is also very farsighted which does not help the ambliopia. They told me that the condition was genetic so we immediately had Hailey checked out too. She was 11 months old when we found out that she also had this condition. Because Jayden was already 3 years old and not been treated yet his eye muscles developed wrong causing his eyes to cross. He had to have eye muscle surgery to get his eye aligned right. After the surgery one of the eyes was doing better than the other so we had to patch him for a year and a half. The Doctor said that we caught Hailey's problem so early that she would not have all these problems.

When Hailey turned 3 in April she was finally old enough to take her first eye exam. To my dismay she was only seeing 20/200 visual acuity (that is legally blind) through her lenses. The Doctor told me that there was nothing we could do about it and that the poor vision was just a part of her being so farsighted and having ambliopia. I was so upset with his diagnosis and just did not feel right about doing nothing so I took her up to Utah to have her prescription checked. I ended up seeing my doctor's tec who told me that he felt her prescription was off and referred me to a Doctor in Tucson and U of A. The Pediatric Ophthalmologist in Tucson found swelling on Hailey's retina and sent me straight over to a Retinal Specialist who did some laser and Digital images of Hailey's eye. He found some kind of growths or folds on the Retina right in the center on the visual cortex. He was stumped. As a Retinal specialists he had never seen this before. He told me that the growth or fold would make Hailey's vision blurry and that to his knowledge there was nothing he could do for her. He said that he would do some research and send the case out throughout the world to see if any other Doctors had seen this and could help. We have been waiting on pins and needles!

This morning the Doctor called and said that she thinks that Hailey has Posterior microphthalmos. This would be a non-treatable deformity of the back of the eye. Which means that the front of her eye is normal and the back is too small. As her eye has been growing and developing her retina, which lays on the back of the eye, has been growing normally with the front of the eye. The back of the eye is not growing normally and the retina is running out of room and starting to bulge and fold. The really scary thing about this diagnosis is that the eye doesn't stop growing until age 8-10 years old. The Doctor said that when rare things like this come up she has to be just like an attorney who builds a case and then proves it. So basically she is still not sure. I have an appointment for Hailey and Jayden both on the 8th of July. She thinks if what Hailey has is a birth defect that Jayden will have it too. She will also do some more tests to confirm or throw out that diagnosis. In the mean while, I have sent her records to my doctor in Utah, to my brother, who is a doctor, at the Mayo in Rochester MN, and to two Pediatric Retinal Specialists in LA and at Stanford. Now we can wait, which is torture, and pray, pray, pray. Thank you to all those praying with us. We love you all.