Eye Doctor Appt

Well today was a day that we would like to forget. What we thought would be a simple eye doctor appointment turned out to be an all day affair.

We arrived at the eye appt at 9:45 (our appt was at 10:00 am) and left the hospital at 2:45. Yeah .... We did not even bring her stroller up because we did not think it would take that long. We know for next time. Snacks, labtops, and stroller needed. Yuk!!!

So what was concluded after three trips to pry Miss Dani's eyes open? She has to be sedated to get a more thorough look at them. Yup you heard it right. We made that appointment with same day surgery on July 11th.

They did give us a prescription to get her glasses and no we do not know how that is gonna work. They said she could only see 2 inches in front of her before things start getting blurry. She grabs everything so how is she going to keep glasses on? We are hoping the experts have that all figured out.

Ethan likes the idea of Dani joining him in the glasses group.

I received a call from Jim Talent's Washington office today. Sarah is going to work with us to find alternate methods to get the goal of a transplant accomplished. She is currently going to check on NIH (National Institute of Health) to see what she can find out. She also mentioned something about non-profit groups helping. Hopefully that will pan out.

Final note the home nurse came this morning to show us how to flush her line and it seems relatively simple. We should not have to change dressing or the caps because we go weekly to Children's and they will take care of it for us.