Brisan and Parker Stults | Living with Niemann-Pick Type C

Posts Tagged ‘Maryland’

Today started off pretty early at 8 am EST in the PED's clinic. We did our basic “overview” of the last eight weeks with Nicole (Dr. Porter's nurse). Infectious Disease came up and spoke with us twice.

Still a mystery with Brisan's sinus issues but they wanted to do a few work ups that haven't been performed yet to rule out any additional possibilities from previous conclusions (maybe lack of???). After a long day we finally were able to get a nap inn and polish off the evening eating some Chinese food!

Tomorrow starts off at 8 am EST again to do a tanker size blood draw. Hopefully we can get through that without a hitch. We should be able to meet some other Niemann-Pick Type C patients tomorrow as they are having a noon lunch/ meeting here at the Children's Inn.

In about an hour we are leaving to head towards the airport for our last trip for the NAC Drug Trial at the National Institutes of Health in Bethesda, MD. The trial started at the beginning of December 2009.

We'll have updates as we go along but please pray that we have a safe trip today and the boys are able to be comfortable enough to last through the trip.