It's hard to believe Alice will be 7 years old in a couple of months. I remember in the beginning of this journey, it seemed like time moved SO slow. Waiting for a diagnosis was agonizing, then waiting for the surgery date, in tears everyday...then the LONG year in the helmet. I'm not sure how time has flown by since then but it has and here we are with a sweet, beautiful smart little girl who made it through and is doing amazingly well. I am so thankful that I listened to my gut instinct and pushed for the endoscopic surgery. If I had to do it all over again, I would still make the same decision.
We took Alice for another opinion a while back. It was actually the first neurosurgeon that diagnosed her at VCU, Dr Gary Tye. We wanted to hear his thoughts all of these years later. He had ZERO concerns. The plastic surgeon also came into the appointment. She took pictures and told us she thought she looked great. She did mention that at any time in the future we wanted to do a small 'fill in' surgery, we could always do that but they both agreed that the average person would never know she had anything wrong. She still has a small indentation on her forehead but it has come SO far since she came out of that helmet. Of course we see it, because we know what she went through but to this day Alice has never asked about anything looking different. She knows about the surgery and the helmet but has never seen anything in the mirror that she questioned. So we will follow up as needed as far as her cranio.
We also had a followup at the ophthalmologist. They thoroughly examined her and said that she had outgrown the eye problem that she had and that she no longer needed to have the surgery to have it corrected. Oh my goodness that was a relief. Again, I followed that mommy gut instinct and chose not to have the surgery. We did some simple eye exercises with her and she ended up outgrowing the issue. I am not the type that's going to immediately jump and do exactly what the doctor says. I will get second and third opinions and do my own research for my child. I do the same for myself with issues I've had in recent years. I try my best to avoid surgical intervention unless it's absolutely necessary. Thankfully Alice was able to avoid the surgery and is doing well. I pray that she will continue doing well. She is a healthy, normal little girl and I'm so proud to be her Mom.
Thank you to all of you that take the time to read my blog. I appreciate your comments and messages so much. All I wanted when I started was to help other parents that were in my shoes. I truly hope it has.
We took Alice to Disney World for her first time about a month ago. Here is a picture of her with Jasmine and Aladdin. Seeing that smile just melts my heart.
