Tuesday, July 12, 2016

And We're Off - Galactosemia Conference Bound

Atlanta here we come! An adventure for Galacto Girl (and her mama and dad) to be sure. The Galactosemia conference,  which is held every two years, kicks-off Thursday evening and continues through Saturday.

The first time I learned about the conference was three days after Francesca was born. I was feverishly searching for answers about this rare and terrifying diagnosis and found all kinds of information about the conference, which was underway in Florida. Soon after we decided that spending her birthday at the conference every other year would be a cool tradition (and get mama out of  a birthday party). :)

While I am excited about the conference, I am mentally preparing myself for a couple of emotional days and information overload. At the last conference they announced several updates to the dietary guidelines. By the time we received the dietary guidelines book, a few weeks after Francesca was born, it was already out of date. They were now allowing legumes, hummus and even certain aged cheeses! I'm looking forward to learning the latest and greatest about the research findings. But I also know there might be information that's difficult to hear. We'll be meeting many individuals with Galactosemia which could include a range of complications. With not knowing how this condition will impact FJ long-term, I'm not sure if meeting others will be encouraging or discouraging, but I anticipate a little of both.

The conference offers a variety of break-out sessions. Chris will be going to the more "science behind the condition" sessions and I will be attending the ones geared towards managing the condition and possible side effects.

Now the question is - will I regret our decision to drive instead of fly? So far so good - but we're only three hours into our multiple day drive. Ask me on Thursday afternoon and I might have different feelings.






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