(I'm stuck in the hospital, which means lots of posts to pass the time. 😀 So sorry!) Ever since we've been on this journey, I've sought out information and experiences, largely from online blogs, sites and social media. (Facebook has honestly been one of the greatest things in terms of getting in touch with people... Continue Reading →
Our Intro to the Keto Diet – My Running Diary
This week, we’re back to UCLA Mattel Children’s Hospital to start Emmett on the ketogenic diet, which is basically a stricter/modified Atkins diet (high fat, low carbs). No one is really sure why the keto diet has been proven to show improvement in some types of medication-resistant epilepsies, but it has helped many babies/kids. It... Continue Reading →
Visiting Seattle Children’s Hospital
Last month, we packed up and took a trip to Seattle to see Dr. Christina Lam, who is a biochemical geneticist at the Seattle Children’s Hospital. She is also a specialist in CDGs (Congenital Disorders of Glycosylation) which we’ve found to be the broader category of where Emmett’s PIGA gene mutation falls under. CDGs are... Continue Reading →
Getting a Feeding Tube
One of Emmett’s most visible differences is his g-tube (gastrostomy tube). Most everyone who has spent any time with Emmett has probably seen the tube that sticks out of his onesies. It’s how he eats. We’re comfortable with the g-tube now, but that’s a far cry from how we felt when they first told us... Continue Reading →
Life by Emmett 