It's Been 3 Years

It's been 3 years since this: 

I'm so grateful that Teddy is quite healthy despite his CDG-PIGN diagnosis. Unfortunately there are others with the same diagnosis who struggle with seizures daily, and we can celebrate milestones like 3 years since his last seizure. Seizures suck. They're scary. They can be life threatening. They can land us in the ICU (once is enough to realize it can happen again). They can rob our children of their skills and progress. Yet, unfairly enough, so can the medicines to prevent and treat seizures. It's a constant challenge to manage the seizures to help our children be their best selves, and we know we're lucky that Teddy's seizures are few and far between. 

In the next couple weeks I'll be sharing more about a really exciting research project, using science to explore treatment options for Teddy's diagnosis. I'm so excited about the possibilities, not so much to benefit Teddy but to help those who are more severely affected, who struggle each and every day with things that even we take for granted. 

But for now, we'll celebrate that it's been 3 years since our last ambulance ride, sleepless night in the hospital (as there have been other sleepless nights) and sheer terror. We'll take his smiles, sass and spunk any day over seizures.