Summer of 2018

It’s been awhile! Sorry for being MIA… it’s been a hectic summer for oh-so-many reasons. First, Emmett has been sick more than usual. He got what we guessed was a viral cold early July, which improved but then turned into pneumonia two weeks later. We ended up in the ER for the third time this... Continue Reading →

Happy Mama Day!

Steve here - in honor of Mothers' Day I'm finally going to make my long-overdue contribution to this blog. I've been trying to write my first post for months and haven't been able to come up with the right topic or words, so I figured that this would be the perfect opportunity to share a... Continue Reading →

One Week Left!

Thank you SO much to everyone who has ordered shirts and donated so far! =D For those who are interested and haven't ordered, there is one week left to order shirts. (Last day is April 21.) To date, we have sold over 240 shirts and raised over $11k toward Emmett's PIGA research projects! (Hurray!) Here's... Continue Reading →

Emmett’s Turning Two!

Next week, Emmett turns two. I still remember the day Emmett was born. I went in for a routine doctor’s visit at 38 weeks, 3 days, but the doctor thought he may’ve seen meconium in my amniotic fluid, so recommended I have my c-section that very day. “Are you ready to have the baby today?”... Continue Reading →

Our First CDG Conference

Last Thursday, we packed up what felt like all our earthly belongings and headed down the coast to San Diego for the 2018 SBP Rare Disease Day Symposium and CDG Family Conference. (I say that because our car was packed to the brim with all of Emmett's stuff, and he comes with A LOT of... Continue Reading →

A New Year

Happy 2018 everyone! (I know I’m late, but at least it’s still January. 😉) At midnight (during the countdown), I sent some good thoughts into the universe for Emmett for this coming year… that his condition stabilizes, that we’re able to make meaningful progress toward a treatment, that he continues to find joy in his... Continue Reading →

In Pursuit of a Treatment

It has been about 10 months since we learned about the underlying cause of Emmett’s condition. I’ve talked a lot about what has gone on with him from a day-to-day perspective, but from January, we’ve also worked on understanding and researching his disorder to see if there’s any hope of improving his underlying disorder. Getting... Continue Reading →

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