Tuesday, October 18, 2011

A Families Journey with Amblyopia

The following is a families journey with Amblyopia - shared by a reader, Nicole. Thank you Nicole for sharing!

I wanted to share my families journey with Amblyopia. My name is Nicole and I am the mother to two beautiful children, I am 27 and have had Amblyopia my entire life. I can remember my parents forcing me to wear my tan colored patch for hours at a time. Unfortunately, there were not too many surgery options available then and I had to learn to cope with my condition, due to this I know have very limited vision in my left eye and my brain compensates with primary vision from the right eye. I also have horrible depth perception.

Fast forward through my life, where I struggled through school being teased for having crossed eyes, and into my journey as a mother. When Mary was about 18 months I finally accepted that she too had Amblyopia, I was in complete denial at first hoping that she wouldn't have to go through what I had. After a bit of a search we found a doctor who specialized in children with Amblyopia. We made our first 2 hour drive for the visit and I was a nervous wreck, what would happen, how can they test her, she is too small, the thoughts just moved so fast in my head. Within minutes of meeting and speaking with Dr. Miller, I was at ease completely, he explained the advances in treatment in detail and made me comfortable not only for my daughter but myself. We ended up getting glasses and a 2hr a day patching regimen. Let me just say if you have never experienced teaching an 18 month old to wear glasses you are missing out on an adventure (sarcasm). We fought day and night for Mary to wear her lenses and struggled even more for her to patch. We tried everything and every type of patch, until I read about Ortho patches on the Amblyopia site, we ordered a box of 'girly' patches and the princess poster to put them on. Mary was so excited to get them and began to wear her patch without much fuss.

Our appointments with Dr. Miller were now more frequent and we were up to our 5th pair of glasses when he noticed that my son had Amblyopia too, my heart sank once again, I felt so responsible for them even having Amblyopia. By the time we left that day we had another new prescription for glasses and an additional patching regimen for Charlie who was about 18 months at the time. Great time to start the hide and seek game with glasses all over again. Surprisingly he was very different from Mary he wore his glasses so well and made sure to bring them to me anytime he took them off.

We continued our bi-monthly check ups when Dr. Miller dropped the "S" word regarding Mary's treatment. My heart sank thinking of putting my 3 year old through eye surgery, I was a nervous wreck all over again. I can't tell you the exact procedure she had done but she needed two different muscles taken care of. We did our pre-op appointment where Dr. Miller clearly laid out what he would do and how it would be done. He was very worried about how I was handling it, I reassured him it was my own fears more than worrying about him doing a great job. The day of surgery went smoothly, Mary had been fully sedated and was quite groggy and grumpy when waking up and the sight of bloody tears made me cry for her, but she was not in pain and other than a little redness and the tears you couldn't tell she even had surgery. At her 2 month follow up Dr. Miller was very happy with her progress and said her vision was already improving.

Then it was Charlies turn to sit in the chair for his exam. After tests and measuring, I knew what would come next, Charlie is now scheduled for surgery on November11th. We continue to patch each of them 2 hours a day. I try to make it as much a game as possible especially with Charlie being under 2 still. I hope that sharing our journey will help others to see that treatment can be successful and even though you are ready to pull your hair out at times, its completely worth your children having better vision. I know I wish still that I did.
~Nicole

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