20/400 in the right eye
20/100 in the left eye
I was stunned. I had never expected her left eye to be that impaired. We are counting on her left eye to be strong and healthy so that if we never attained good vision with the right, well, we could count on the left. Now her "sound" eye (as the doc calls it) isn't seeming so sound.
Even the doc was surprised, which sparked great anxiety in me. I didn't understand how my baby's vision is so terrible but she runs around like a maniac!
To make matters worse, we had a terrible incident with her on Sunday. Jed accidentally ran into her and she fell straight back onto her head. She immediately started screaming, but when I picked her up, she stopped. I figured she had calmed down, but when I looked at her, her head was tilted back and she wasn't breathing. Her eyes rolled back in her head and she went limp. James started screaming her name and I froze. After blowing in her face and even puffing air into her mouth, she started screaming. She cried and cried, but was lethargic and sleepy. So we immediately went to the ER. Of course, by the time we got there, she was acting completely normal. Docs said that she probably was so stunned that she tried to take a long, deep inhale but got "stuck" and held her breath. She didn't have a concussion or anything so we came home. It was the scariest moment of my life. Scarier than handing over my baby to a surgeon, scarier than learning about phpv and cataracts, scarier than anything I have ever experienced. I keep seeing her image in my face and it tears me up every time. I thought I was going to lose my baby in that moment, and it was too much. I couldn't take it.
Well, that incident, on top of the new vision information has set my anxiety on edge. I am by nature an anxious person and always feel better if I can "do" something or "fix" it. Well, I can't fix this and it makes me crazy. I'm walking around with a ball of nerves in my stomach feeling like I am constantly filled with adrenalin. It is a horrible feeling and I'm not sure what to do (short of becoming a zombie on a ton of anxiety meds!) So I text some imoms and realize I'm not alone. Read some other blogs and know that other families are facing the same challenges. Talk to my husband and my mom and accept that I am a great mom that is taking care of her baby in the best way she can.
So, after emails with the doc, contacting First Steps about more vision services, and lots of tears - I have done all I can. We are seeing the doc Oct. 2nd (perhaps earlier - he told me to call his nurse to get squeezed in) and he is going to do the Cardiff test himself to make sure the numbers are right. And we will go from there. He is also going to go over the results with the surgeon to see if/when we should do the strabismus surgery.
There is a bit of good news though. The fabulous nurse, Tracy, from the Eye Clinic called and said that Julia's back up contact was in. The company sent a three pack (so we have three back ups!) and the cost is only 90 dollars for all three! I don't know if this is an apology for messing up so many lenses or their normal bulk price, but it is great. I can't figure out how one lens is 150 and three are 90, but whatever. Maybe they made a few extra and since they are custom and don't really sell that size they are discounting it. Who cares - I get cheaper lenses! But wait, it gets better...
The doc emailed me and he spoke with our insurance and they are approving the lens! So I am getting three lenses at no cost. That made my day. Gave me just enough boost to keep going. So we will get up tomorrow, put the contact in, collect our patches, and go about our day. One day, one patch, one contact at a time...we will do this.
