I took a trip to Trader Joe’s in Culver City last year, masked up and full of sanitizer. It was a trip I made every 2 or so weeks. That day, I was wearing one of our CDG shirts. While I was waiting in the checkout line, the woman who was directing “traffic” asked me... Continue Reading →
I remember sitting on our kitchen floor days after Emmett passed, next to Steve, staring at all the beautiful flowers our friends and family had sent. It felt surreal then, and still does. One day your child is there, one day not. One day you’re moving at 100 mph and the next, everything is… still.... Continue Reading →
I’ve had this post written for months but haven’t had the courage to post it. It’s about Emmett’s last days with us … a period I think about often. Because honestly, as precarious as his health was, we didn’t know how little time we had left with him. I don’t know if this will help... Continue Reading →
I haven’t posted anything since that update about our hospitalization last summer. It’s long overdue… I know. Especially since so much has happened. The truth is, I was waiting to be out of that dark hole that the hospitalization put me in before I wrote anything. It was the first real time I grieved… not... Continue Reading →
On Thursday, May 30, during rounds, the attending decided to go ahead with a PICC line for Emmett. (A PICC line is basically a long IV that goes into a large vein, versus a normal IV that just goes into a peripheral vein. In Emmett’s case, the two PICC lines they’ve placed have gone into... Continue Reading →
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 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 →
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 →
Since we’ve been back from the NIH, it’s been an endless cycle of hospitalizations. First for six days in the Pediatric ICU once we got home for respiratory distress. After that stay, we received an array of large respiratory machines so we could give him twice daily treatments at home. A vest designed to shake... Continue Reading →
Our trip continued Thursday with clinical photography, a visit to Audiology to check his hearing, an appointment with a nutritionist to discuss his current needs and his post-Keto diet, and an attempt to check his vision with an ophthalmologist. (He screamed almost as hard at his eye exam as he did during his blood draws.... Continue Reading →
Life by Emmett 