"She's Hardy"

In late August we had an appointment with a nationally renowned geneticist, Dr. Kenneth Rosenbaum, from Children's National Medical Center in Washington, DC. We were eager to see him since he has decades of experience treating children with rare conditions. Most of our doctors Eleanora is the first or second child they've seen with her particular condition--Dr. Rosenbaum has seen more than 400).

Our visit was the most positive we've had since the 20th week of pregnancy. Many of the children Dr. Rosenbaum have seen have been blind and/or deaf (Eleanora is neither), many are not able to use their hands (Eleanora is dexterous), many never respond to stimulation (Eleanora has many opinions and shares them freely), and of course many do not continue to live. From his recollection, Dr. Rosenbaum has had five children live longer lives than expected--three lived until 2-4 years old, two children lived until their teenage years.

Although Eleanora has clear advantages over many of her peers, her prognosis continues to remain the same--on hospice care. But! This appointment shifted our frame of mind--from waiting for her death to living in the moment. It gave us hope. This is something we haven't had for months.

I heart Dr. Rosenbaum!

PS--Mike V. this post is for you!