Jaxen- PFV, dense post-lenticular plaque and cataract

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How Mom and Dad found out I have PFV and the surgery

My doctor, Dr. Chopra came to check me out after I was born, and noticed that I had a white spot on my pupil in my right eye. He was not sure why, he had never seen that before, he thought it would go away. He came back later that evening to check it again, it was still there. So he called Dr. Whitfill (my eye doctor in Wichita) to ask him about my white spot. Dr. Whitfill wanted to see me. So the day after we got out of the hospital Mommy and Daddy took me to see him. He checked me out and told Mommy and Daddy that I have what they call PFV, and wants me to see a specialist in Kansas City; he referred me to Dr. Hug. A couple days after Christmas we made our trip to Kansas City to meet Dr. Hug and have her look at my eye. She told my Mommy and Daddy the same thing. I have PFV (Persistent Fetal Vasculature also known as PHPV) with a dense post-lenticular plaque and cataract, which happens at times when babies are born with PFV.

The cataract is the simple fix. The PFV was a lot tougher. We scheduled surgery for January 21. Surgery was supposed to take 1.5 hours; my surgery took 3 hours because of all the plaque and blood vessels she had to remove. She had to leave some membrane that was attached to what make my eye water. For several reasons, one so my eye can water, two so that when I get bigger it decreases the risk of later developing glaucoma, and the last and main reason is so that my plaque buildup doesn’t come back. She also had to enlarge my pupil to lower my chances of getting my plaque back, and give me less blind spots.

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Post Surgery
After surgery I had to wear a shield for the rest of the day and night. The next morning I got to take it off. One week after surgery, Dr. Hug put in a contact lens to give me vision and develop my vision. I got to see the world for the first time with both eyes!! Mommy and Daddy were so happy, when they saw my expressions!! I will have to get a new contact every so often. Each contact lens will be a different prescription. I have to do patch therapy. With the contact I will not have to wear glasses, because the contact will be sending the signals to my brain that need to be sent. With the patch therapy I will have to cover my left side so my “new” eye will work with my brain. Dr. Hug wants to make sure my brain and eyes are working together, like they should be. Once I get older and my eye is done developing and has reached its full size and shape, Dr. Hug might do another surgery to put in a permanent lens. She could not put the permanent lens in now, because my eye is so tiny and has not reached its full growth size yet. It will be a continuous journey that we will be on for the rest of my life.

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Since Surgery/ Starting the patching

I have my days where I hate the patch attached to my face covering my “good” eye, so my “bad” eye has to do a work out.  Other days I show Momma who is boss.  I started out when I was 5 weeks old wearing the patch for 2/3 hours a day.  Patching that long was very hard.  I was not a happy baby, I fussed and fussed!  I even learned how to rub my eyes hard and long enough to get it where I could take the patch off.  When I turned 4 months old, we had to make an emergency trip to Kansas City.  My eye had swollen and turned red and scared Momma.  When we got there Dr. Tim Hug (my contact Dr.) said that the material of the contact was too heavy and not letting my eye get oxygen.  Then he ordered Momma to increase the patch time up to 6 hours, because my focus is not exactly where it should be.  It is just a little behind, not much.  Dr. Tim Hug said my eye still looks good and it on the right track.  Since then I have grown to like my patch on most days.  My Momma says patching is becoming easier. Most days I am less fussy and do not rub or play with my patch as much as I used to.

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