Diagnosis Day

Our lives changed forever 8 years ago. Teddy was diagnosed with PIGN-CDG, though at the appointment the name was Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1 (MCAHSS1). Even though that name was a mouthful, I walked out of there with the name engrained in my brain ... apparently until this moment when I had to refresh my memory.

The diagnosis opened our world to amazing relationships through our PIGN family. We've met families across the country, shared tears and celebrated successes together. We've developed friendships with incredibly caring, accepting people from myTEAM Triumph. Either of these alone is life changing. 

Diagnosis Day 2015: So Little, So Cute

My goodness, he was so little. He was also so darn cute. This is when he thought he was worthy of being the doctor. This was also minutes before our lives changed. 

When we got his diagnosis, we were told he was the 15th in the world. It was overwhelming. That's why we have so much empathy for new families who are diagnosis. It may be 8 years, but we still remember exactly how it felt. 

We left that appointment with more questions than answers. We wouldn't even tell our families the name of the disorder because we didn't want them searching to find the 2 or 3 things that existed on Google. The reason for that is we didn't want them to see the life expectancy of 3 years when our son was already 2.5 years old. 

It took months to come to terms with this diagnosis. Honestly, it's still a journey because life with Teddy is a roller coaster. There's always going to be moments that bring all the feelings, which means we need to come to grips again and again with different aspects of his diagnosis. 

Diagnosis Day 8 Years Later: Not So Little, Still So Cute

But, hey, it's 8 years later. That 3-year-old life expectancy was blown out of the water (by Teddy and so many others with this diagnosis). We're so grateful for that! He's not so little, though I imagine in 8 years I'll look back at the pictures from today and think, "He was so little!" That passage of time is a blessing for which I'm always grateful. 

The photo from today is when Teddy thought he should have a sleepover with his grandparents. And gosh, he's still so cute!