Home Again, Home Again, Jiggity Jog…

We are happy to be home and happy that Lucy is doing better, but disappointed that I was unable to attend a majority of the UMDF’s Annual Mitochondrial Medicine Symposium this year.  However we are very thankful that it was held so close to home for obvious reasons. After 24 hours of cooking time Lucy’s line cultures are negative for growth of any bacteria.  We were discharged tonight...

Yesterday and today…

We were here, running to and fro on Capital Hill. We were lobbying with the United Mitochondrial Disease Foundation, meeting with our representatives and senators asking them to support legislation for primary mitochondrial disease research . And tonight, we are here, at the “hotel” DuPont, admitted for fevers and an occluded line, Lucy decided to throw that in at the last minute...

Summertime…

It’s official, today is the first day of summer vacation for our kiddos and you know what, every day of the school year we have to wake them at 7:15 am but not today, nope they all (except for Megan) woke up on their own before 7:15 am.  Last night I announced that there would be a major incentive given on the last day of summer vacation to anyone who makes their bed every morning, does their...