This weekend, we leave for a week-long trip to the National Institutes of Health (NIH), a government entity responsible for biochemical and public health research. We were invited to take part in a clinical study they're conducting on Congenital Disorders of Glycosylation (CDGs). (And by invited, I mean we found out about the study and... Continue Reading →
(I'm stuck in the hospital, which means lots of posts to pass the time. š 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 →
This week, weāre back to UCLA Mattel Childrenās 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 →
Last month, we packed up and took a trip to Seattle to see Dr. Christina Lam, who is a biochemical geneticist at the Seattle Childrenās Hospital. She is also a specialist in CDGs (Congenital Disorders of Glycosylation) which weāve found to be the broader category of where Emmettās PIGA gene mutation falls under. CDGs are... Continue Reading →
One of Emmettās 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. Itās how he eats. Weāre comfortable with the g-tube now, but thatās a far cry from how we felt when they first told us... Continue Reading →
We ended up leaving the hospital after two weeks, but with as many questions and four new medications. His intestines never went back to ānormal,ā but he slowly started to tolerate eating via the g-tube again, meaning no spitting up and with normal bowel movements. (Side note: Iāve never cared so much about poop as... Continue Reading →
At 12:30 p.m. last Thursday, Steve made an appointment to bring Emmett into UCLA Mattelās urgent care. We were there by 1:30 p.m. and admitted into the ER by 2 p.m. Emmett hadnāt slept at all the night before and started to spit up whenever we fed him. He also started to get frequent episodes... Continue Reading →
We have been overwhelmed by the response weāve gotten. To be honest, we wavered about whether we should share anything, and how much. Almost all of the articles Iāve read were about the āafter.ā How someone recovered from postpartum depression. How someone managed to deal with the tragedy of losing a baby. The lesson or... Continue Reading →
Iāve written and rewritten this for what feels like a million times. How do you really convey all that goes through your head and heart when something like this happens? Weāve been on this journey for as long as Emmett has been alive. First, his stay in the NICU as they ran test after test... Continue Reading →
We flew to San Francisco late January to visit a neurologist at UCSF. It was his first flight and he did as good as we could've hoped for! We did follow some tips on things to prepare so thought I'd share them here. Have some sort of documentation that proves how old your baby is.... Continue Reading →
Life by Emmett 